I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Gerald Lively on December 15, 2011, 11:00:58 PM
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I went to the surgeon who cut up my wrist for the fistula, a follow-up. He didn’t like it. Now I must endure an angioplasty which may or may not, work (he said). Then he started looking at my bicep. This is not going well. I crossed my legs just in case he had any other ideas. He said we would do this on Monday, just which Monday he didn’t know – yet. Stay tuned.
There is a particular seat in the dialysis center that I will not sit in (I will keep the reason for that to myself). After having given in to the Dialysis people twice, I refused to go there today. We had a stand-off for thirty minutes. I said something about the DaVita Center down the road and a seat opened up for me. I talked with Mr. Bill, the Supervisor there (a good guy), and I got the sense that I was the wild card patient in that I sat in places where the long-term patients were either late or absent. After six months of this I declared myself a long-term patient. Mr. Bill will deal with that, he says. I hate to grumble to those people but it seems to be the only way to get them to treat me as something other than routine. No, I am not spoiled, I came from the wrong side of the tracks, if that means anything. It was depression government housing in Richmond, CA. Next to a refinery – cough, cough.
Once again Dialysis left me dragging. Today. This must be my fate. I get all this ambition to do something, then those guys waste me. It looks like it’ll be four to five months before I do the home-dialysis thing and gain a degree of control over my quality of life.. I wonder if I am too impatient? Or a bully as I carve my way through life and the dialysis center. I probably nag at them. Nag, nag, nag! I got my training at a Nuns school; don’t ask about Pope’s who had mistresses or it is bruised knuckle time. Got an “F” in religion once. Geeeez! They had no sense of humor.
This isn’t a world shaking post but I find this place a real outlet. It seems this forum has been around so long that some people have enough posts to write a books. Most time I have difficulty finding my way around. You know, like trying to find what so and so posted today. So, I thought I’d try to centralize my posts right here. That may not sit well with the bosses (there seems to be a dozen or two). I will give it a try anyway.
gerald
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Most time I have difficulty finding my way around. You know, like trying to find what so and so posted today.
Here are two tips that may help you navigate...
1. If you want to see what a particular member has posted, you have to log on first, and then click onto the member's name. You can do a search for a member, but that is cumbersome. The easiest thing to do is to find one of their posts, click onto their name, and their profile will come up. On the left hand side of their profile, there is a menu of things you can do, like send a private message or see all of their postings since they joined. This is particularly useful when you want to find out what brought them to IHD in the first place as you will be able to see their very first introductory post.
2. If you want to read all of the most recent posts on IHD, toward the bottom of the forums page, you'll see "Forum Stats". That will show the most recent post, and underneath that, you can click onto "View the most recent posts on the forum." You don't have to log on to do this.
I hope this helps!
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It took me over a year to get a fistula up and running.
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also..to add to MM's 'tips ' ;D, on the top of each page where you see your little picture, and it sais "hey Gerald Livley, you have __ messages" etc... well right under that it will give you a couple of options... Thats where i always start my readings :)
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From my old blog - I wrote this when I was healthy and competing in championship powerlifting. I am pleased to report that I still hold this philosophy today. (2008) This is also the year the forest fire burnt out very large house down to the ground.
"Strife is a knife into the bowels of life."
I listen to the passing thoughts, each unrelated to the next when I permit my mind to run free. This abstraction is me. Should I announce a self image, a private musing, or is this a manifestation to reality? Try me! Does this connect to anything you know?
Who are we? Or is there no "we" and only me. Did I imagine you and the world you inhabit? Am I so masochistic that I have made myself live and struggle to be in this place, in this time? Are you merely bytes in some electro-magnetic circuit, something I imagined? If so, why don't you have larger boobs? That is why there is "we" and not just me; you see, I cannot change you.
So, we are in this mess together. Where? If the string theory works, permitting parallel universes, then we are insignificant and we, you and me, place too much importance on our existence. Follow the theory to it's end and you may realize that we are a miniscule something that is only a part of something larger. Larger! Yes, we may be a part of a proton in a crumb of bread hidden in some corner of the kitchen floor in a larger place and a different time.
So, why anguish about life. As I have said on other occasions; life is for living - strife is a knife into the bowels of life. Live life, screw the definition of what we may be and enjoy the life cycle you happen to be in.
Everything is electro-magnetic energy, our eyes are tuners to see only a small portion of the spectrum, so permit you mind to roam. Yes, you! I shall return to my poke of fun at the Mythical Being that Nobody has Seen. You may wish to connect to me, or thee and be astounded by the simplicity of it all.
Kootie J
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I'm sorry your fistula isn't going well. I did my follow up for my first surgery, expecting a second surgery, but the surgeon said it went so well I'll be trying out my fistula in two weeks. I can't wait to get rid of my chest catheter and start taking showers. It's the best Christmas present I could get. Thank you, Jesus, thank you, Lord.
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I am the voice that rumbles beyond the clouds; the angel called Earl; the mystic entity that puffs the lonely wind (not flatulence); I am the scribe of the commandments. So there, you know who I am. No, I don't have an e-mail address. I have viewed the world I created and those little creatures that swarm over the surface of this place, and have considered calling Clark. No, not Clark Kent; "Clark, we need you!" Perhaps I have over created for there are lawyers among the many.
First, I wrote 30 commandments and discovered two problems immediately, Moses couldn't read and he was no weightlifter. True, I had to write them on a rock because Moses forgot to bring neither paper nor pencil. He was not a good student. Then he dropped them and broke my words into many pieces. I had not backed up my thesis and could not remember them all, so he got ten; it was all he could handle. Besides, he broke them, so I made him carve the words on the second set. I have often speculated that he snuck something in there, which is why there are lawyers.
I remember a few that were left behind; yes, thou shalt not eat Twinkies from the 7/11; thou shalt not smoke after sex and you are instructed to snuggle and say huggy-pooh things; I didn't use the word "covet" and I have no idea what it means, coulda been a typo (as in cover - think about it); Thou shalt not pull your pud more than once per day and I don't care about prostate health; Thou shalt change your underwear once each day, you never know if you're going to be in an accident (I think that one came from Mom, yes, I have one of those, we were Jewish, ya know).
Many have wondered why I was on the mountain top and not down in the valley for everyone to witness; the answer came from my caring soul, Moses was getting fat so I made him climb the mountain a bunch of times. It didn't work, he always carried a large picnic basket, ate all of the contents and used the basket to carry the stone upon which I had scribed those magnificent words. He had wheels on the basket.
I have always wondered where those poor former slaves of the Egyptians came up with all that gold to make those idols that Moses flipped out over. Me thinks there was some skullduggery going on.
But there was manna all around the mountain so they hung around for about forty years. You would think they'd get tired of the stuff. Matzo balls, a lawyer changed the name. Boy, I sure got tired of making those things. Shoulda made a commandment about 'em. They were fattening, and Charleton Heston didn't look like Moses. Moses never exercised a day in his life, and he didn't shave or use deodorant. This was the beginning of Welfare, an institution that has survived the resistance of time and Republicans.
Hold on, the phone is ringing! "Yes, this is the mystical being that nobody has ever seen." "Uh huh, all of 'em". "Thanks Clark!"
gl
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"Saving Grace"...the Angel Earl....fine TV entertainment with the perfect finale.
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In my humble opinion, Saving Grace was the best TV series ever. The creativity was stupendous, the casting was perfect and the writers displayed an obvious sense of freedom. Terrific stuff.
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Surgery tomorrow AM - 5:30 AM. My doctor is a vampire and only works at night. This is cruel and unusual punishment. This is . . . . . . . something or other. All of you probably consider my forearm angioplasty minor surgery, but it isn't for me. This is nothing more than another in a long series of medical harrassments that fate is planned for me by the "man behind the curtain".
And, yes, I have been down in the dumps this weekend. Whoa is me! Sniffle, sniffle.
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I hope all went well. We haven't heard from you so I'd guess you are recovering in a haze of pain killers.
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The surgery was anticlimactic. It was nothing. No pain, no strain. The last word from the Surgeon was, “We may have to do this again.” And I went further into a funk. There is no end to this. No time for myself. All of my waking hours are devoted to some aspect of dialysis. This isn’t living, this is existing. I have no intention to live for the purpose of keeping doctor’s appointments.
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It certainly seems never-ending and beyond overwhelming at times. I hope your spirits lift, Gerald. Medical procedures are no fun, but glad to hear you were in no pain. We are here to listen and help you navigate the emotional fallout from all of this, and share a laugh with you as you are clearly a man who appreciates the importance of that. Thinking of you.
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Before I could walk, Dad wanted me to move around but Mom usually impeded progress out of concern for my safety. I actually remember several episodes at that time in my life. Example; we lived in a house that had a gas heater on one side of the room. A ceramic grate inside, through a little open vent, glowed in various colors, changing from time to time – probably affected by the temperature of incoming air. I was fascinated by it. Mom always pulled me back.
There was my sister, of course, Catherine. A year younger and she was a handful. One Sunday when she was about three and we were all dressing up to go to church, she wore a fluffy little all white dress and white shoes with a bonnet to match. I was told to keep “an eye on her”. Then we were sent outside. This house was in the middle of a vineyard with large irrigation ditches every so often. I especially recall her shoes; they were chalk white with the white shoe polish they used in those days. Yep, she headed for one of those irrigation ditches. I had my eye on her. That ditch was dry up to a board that blocked random water intrusion. She started to climb over that piece of wood. I tried to pull her back but she started screaming, as she usually did when we were together. In she went. That mud was especially black. I was all clean and I wasn’t going in after her, besides she was already dirty. She looked like she fell into a vat of chocolate. I remember my father saying, “I told you to watch her,” and I said, “I did watch her.” This was the first time I got knocked down for being a smart ass.
Grammar school was so boring that I could hardly stand being there. Those teachers and my parents decided that I wasn’t hearing the lessons so I was given hearing tests. Ears were okay. ‘Smack’ to the back of the head for not listening. By now, getting hit was routine. Life seemed unfair. I wasn’t aggressive but I did fight back and it was always me who got the punishment, usually a paddle to the knuckles. I was learning that life wasn’t fair or that fairness had nothing to with life. The lesson I learned at that age (about six) was survival, a trait used for the rest of my life. And that comes in various forms.
In class one day after the teacher read one chapter out loud from Jack London’s Call of the Wild, she turned to the class and instructed us to write a book review based on our progress through the story. I wrote mine and never gave it a second thought. The next day she called the class to attention and read my book report out loud. She read only mine. She praised what I thought was casual work. I don’t know what she intended but that episode had an effect on me, as in, be myself. Not what others expect you to be. Then we moved to another town.
They placed me in Catholic school, the worst experience of my life. They thought I was stupid, too stupid to keep up with studies. So, My parents and those nuns had me take an IQ test. I don’t know the results but it perplexed those nuns. I asked my mother what the score was and she said, “I can’t tell you because it would go to your head.” It wasn’t until I joined the Army did I find out.
Mom and Dad turned into drunks. I could do nothing right. Dad always prefaced a bout of hitting by saying you’ll be nothing but a pencil pusher. Dad committed incest with my sister and I ran away from home, joining the Army. It was there that my learning curve took a huge upward turn. In my years there, I grew up. Military intelligence. Owned a junior partnership in a liquor store, sold it and went to college. Elected Student Body President and yes, I had a sign ready for protest meetings (1970’s).
I have since lived a life based on the Ying/yang philosophy. Executive by day, biker on weekends. Owned nine different Harleys. Sailed on SF Bay. Hiked the northern California foothills. Competed in powerlifting until I achieved four California records. Did amateur radio. Built a home. Built the County Administration building – 61,000 sq.ft. Built two libraries. Renovated the Main Jail and ran the jail for four years while I was also the county budget officer (second in command).
Then retirement. I wanted to see everything we owned, purchase the right cruising sailboat and live out my days in some tropical sleepy lagoon. But along came Lymphoma. Then Prostate Cancer, then Gall Bladder, then prostate again, then Hodgkin’s Lymphoma again and finally, Renal Failure.
Although I was delirious for a time (I’ll have to relate that experience some time) I always thought I could cope. I only had to do dialysis three times per week and that wasn’t much of a burden. Not true. Remember, I also have cancer. So, everyday is either recovery from dialysis or I have an appointment for some test and some doctor who only wants to tell me that I have another appointment down the road. Doctors are like that. I saw a specialist for Syncope and he insisted I undergo his sleep clinic. He failed to explain the relationship between syncope and sleep, so I told him to stuff it. After that he talked to me only when his back was turned to me.
Then there was that cataract surgery, the Doc hit my eyeball with her little laser and I wasn’t asleep. I jumped up, grabber her arm and let out a long string of expletives. Yes, I was half under, I don’t remember my exact words. After a few minutes she finished up. It still hurt. And my eyes have gotten worse. Sometimes I struggle to read this monitor and it’s a biggy.
So, the house burnt down in a forest fire. We lost everything except the vehicles we escaped in. It turns out this arm of the fire was caused by the firemen fighting the fire when they lit a back-fire and it turned around and overran the fire line – a quarter mile from our house. Some retirement.
Well folks, there is more to all this but I have burdened any reader who got this far, unfairly. I am writing just to get my own head straight. I had an angioplasty on my forearm two days ago and it was nothing. Did not sleep for several days. I climbed down into the a very deep depression in spite of the antidepressant I take. I am attempting to work my way out into the sunlight.
It looks as if I will never have time for another adventure, no new ground to break, only the semi-daily grind of that dialysis machine and another doctor who will look me over as if I were some kind of test dummy. I am not built for this crap. I feel mistreated. I want a way out.
Gerald Lively
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Catherine, my sister, died from Renal Failure and Lymphoma in 1999 - in Texas.
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I scared everybody away by crying in my beer. Shame on me.
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I just chased the neighbor's dog off the patio. I suppose the neighbor will complain that his dog is constipated.
That was the bog news from California.
I am outta breath.
Huff,. puff.
Maybe I shouldn't have fed that dog exlax cookies.
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burdened... i think not... You bring so many thoughts to me and I'm stumped. I wish i could get out onto paper, or computer,( or somewhere dangit!!), my thoughts as you are able. I appreciate all that you let out to us and only wish i were magical and could give you a beautiful happy "way out".... oh yea,, and "shame on me" i think not AGAIN!! i say GOOD for you! Your crying in your beer did make me think of my mom and her always saying "well for crying in the beer" ..lol and that made me laugh.. and that's a good thing. So, write write write, and let me read it if nothing else. And just think, mabie one of our wiser ones will come on with some actual help..........and better spelling than i...
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Gerald, your writing absolutely touched my heart. I too have had an exciting life much like yours. Like boswife, I too wish I could put my thoughts and feelings onto paper as you did. Good job, keep writing. I have no answers for you either by the way, except what my Mom always said, "Keep your chin up". It helps me.
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You haven't scared anyone away, Gerald. What you've written touches all of us and you express yourself so beautifully. None of us here has the life we would have chosen. That's what this forum is really about. We help each other along in this difficult journey. Your 'grumbling' and your humor contribute a lot.
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Write this down; I hate dialysis. Yes indeed, it robs you of feeling good, leaves you at the mercy of an uninterested nurse, limits the water you drink, the food you eat, and it takes away your ambition by robbing you of your soul.
I asked the good Doctor today if I was eligible for a transplant. No! It seems I have cancer and kidney failure at the same time. I have to wait five years, then I will be 78. Well, shit fire and save matches, that won’t work. Condemned to suffer.
So, what is the answer? After long discussions with the Doc and Wife, we decided to get a dog. I want one that sits on my lap, licks my face and can’t wait for me to come home. Yep, a dog. Wife asked me what I would name it; “Augie”. That goes with Augie-Doggie. So, we looked at pooches today and I got sick. Had the Hersey squirts. Can’t wait for Augie. Need Augie.
Is this a way out of the funk?
gl
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Have you thought more about nocturnal home hemo? If you can go that route, you get rid of a hattrick of problems, ie the bored nurse, the fluid/dietary restrictions and the soul destroying hours wasted at the clinic. You dialyze at night while you sleep and live your life during the day, taking care of Auggie Doggy.
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Would you like a small obnoxious beagle? He will sit on your lap and lick your face, most often after eating something he shouldn't have.
His name is Clark but I'm sure he'll answer to "Augie". He sure only answers to "Clark" when he feels like it.
I could stuff him in a FedEx box and overnight him to you.
(Can you tell that Clark and I are not on good terms right now? - He ate a few things last night around the house.)
I jest though....he's a good dog (for the most part).
So, what is the answer? After long discussions with the Doc and Wife, we decided to get a dog. I want one that sits on my lap, licks my face and can’t wait for me to come home. Yep, a dog. Wife asked me what I would name it; “Augie”. That goes with Augie-Doggie. So, we looked at pooches today and I got sick. Had the Hersey squirts. Can’t wait for Augie. Need Augie.
Is this a way out of the funk?
gl
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Thursday my dialysis center took out 5.8 kilos. My legs cramped up very badly and I couldn’t sleep last night. Today I walk with a pronounced limp due to soreness. I truly felt like I was going to die. Today I checked into this. The paper work-records say I checked in at 107.8 kilos and they took me down to 101.something. My dry weight is 102.0. It turns out that this was a handwriting error. I actually checked in at 104.8.
For this reason, if for no other reason, I will get out of that place and into home dialysis. The bad news is that cannot happen for another five or six months.
I truly hate dialysis.
I picked up Augie-doggie yesterday despite how bad I felt. He is a little Chihuahua-Terrier mix. He makes a difference around here already.
Gerald
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This is absolutly unforgivable... You have to watch everything!! I Told bo about this and he sais not only do you feel like dying, you wish for death... I've spent nights of pain with him and its horrable!! Im sorry, and hope that thats the last of THAT!! YOu know, we're on home hemo with nxStage. Well, yesterday we had to go in to get treatment so he could get a transfusion. I did his needles, and nearly had to stand guard over him to keep at them as to how to treat him. Now this is a GREAT center that i really admire and all, and still, it is a watch over situation. Im grateful for the extra hours it takes to do at home!!
Im so happy for your little Augiedogie... My animals (one particular dogie of mine inparticular) are my salvation... They bring me peace, destraction, and oh so much love.. im overjoyed that the idea of getting a little critter came to you.. Wonderful 'happy' bringers....
Merry Christmas to you and yours, and peace be with you..
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In wrapping up the stats on the Lively Roots website, I noticed that we had 30 hits from this website. I thank you. I love you all. I'm feeling worse and worse after that bout with dehydration. I complained today. Unhappiness.
gl
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Whenever my kids would complain about their aches and pains I would tell them stories about someone with worse aches and pains...good mom, right? Well my kids would end up telling me they didn't care if other people had no food, no place to sleep, unbearable pain...whatever the kids were going thru was much worse, hurt more and lasted longer then anyone else...and it didn't make them feel better to hear about other peoples woes they just needed for me to take care of them, spoil them and give them whatever they asked for. I have very sympathetic, empathetic and pathetic children (at age 40 , 38 and 26) and I love them dearly but but but but....
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Gerald, I really enjoy reading your posts!! Hopefully the doggie will make a difference. Always check and double check the amount of fluid that is being removed. When he was in clinic doing dialysis hubby always wanted the dialysis machine turned so that he could see the monitor. We had a few mistakes with taking off too much fluid at the beginning!!! Home dialysis should make things easier. You have your own schedule and can change it without impacting anybody else, if you make a mistake in calculating the amount of fluid to come off you have yourself to blame, plus your diet and fluid is a lot less restricted. Hubby didn't really mind in center while he was doing it but he hates to even think about having to go back to in center now. And the depression - I think a lot of people with kidney failure/dialysis or any chronic disease suffer from depression of some form.
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That's gnarly, dude. I had a similar episode last week, although nothing close to your purgatory. I went in on a Wednesday at 189 lbs. and went out at 182 lbs, cramping, but finally getting the BP below 100. Then I drove home, and on that drive, through crosstown traffic, cramped like a mother in labor, pulled over, paid a bum $10 to get me water, and waited for the ambulance. After 1/2 hour I was okay, and drove away, wondering if the drive in where I parked, and people freaked out watching me cramp, had called an ambulance. I was in radical pain. I'd been eating meat, and I'd gained a couple of pounds, so that threw my dry weight off kilter. I totally get some of the things you write, like the existing to do doctor appointments comment, and I have to laugh to keep from crying.
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Something is wrong and I don't know what it is. I'm wilting. Slowly and surely feeling worse each day.
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Gerald ... I'm really sorry to hear you're still not feeling well. I hope things get better for you in the days ahead. I'm sure your wife is doing everything she can to help and support you. I wish your medical support team could help figure out how to get you past this place you're currently at to a better one. You've had so many challenges to your health in the past and from everything you've written thus far, you have shown great strength and courage. Wishing you the best.
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Something IS wrong.....
It is unconscionable that they would pull you down that much over a clerical error. Gerald, the depression is awful.....I know you said you are on medication for it, but dialysis is probably messing with your doses (as well as with your well-being!).
Oh, I do hope this gets sorted soon. :cuddle;
And I wish I could write like you do.
Aleta
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Gerald... no wilt :( I know you know way more about your body than most but is your hemoglobin ok? Hubby wilted almost to death just over this last couple of months due to hemoglobin falling. It was so horrably sad for both of us and though i dont know that its back up to great yet (had second transfusion day befor Christmas) but can tell that it IS better than it was. Please get better.. :pray;
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My hemoglobin is 10.1, up from 8.4 in August. It should be higher but this gets mixed up with the Hodgkin’s Lymphoma. Nevertheless, this is an improvement.
KT/V is only 1.09; Flow Rate is slowing to 227. Worrysome!
Creatinine still moderately high at 3.3. Still have diarrhea since the dehydration incident.
Well now, there is my health profile, not so great but I am still above the grass. Haven’t felt well for some time. Got the little dog (Auggie) who follows me everywhere, climbs under the bed covers at night, is a face licker, and the nurse/Doctor have told me that dogs are not permitted during home dialysis. Arf, arf! Wanna bet?
To live is life, to cope is death.
gl
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Did they give you any particular reason why no dogs during home hemo? I was told that as long as the dog wasn't around during hook up or take off I was okay. Dog won't come near me when I am on the machine, just gives me soulful looks from across the room.
Well now, there is my health profile, not so great but I am still above the grass. Haven’t felt well for some time. Got the little dog (Auggie) who follows me everywhere, climbs under the bed covers at night, is a face licker, and the nurse/Doctor have told me that dogs are not permitted during home dialysis. Arf, arf! Wanna bet?
To live is life, to cope is death.
gl
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The Doctor was blunt about it. Screw her! Well, maybe not that! Or, well, who knows?
No explanation offered by the Doc.
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Regarding having furry family members around, just adopt a "don't ask, don't tell" attitude.
As long as you maintain aseptic conditions during the critical start and end periods, there should be no problem. I have a friend whose dog stayed out of the room until hook-up was complete and then spent the entire treatment in his lap, leaving again for the unhooking!
Dogs are important family members! :2thumbsup; I give Auggie two thumbs up!
Aleta
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I have the same setup willowtreewren mentions, the dogs are out of the room when I'm connecting and disconnecting. The rest of the time they are typically curled up on my lap or against my legs.
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im so glad you have your Auggie ;D Amazing helpers they are. And you can, (and will..lol) or should i say you are alloud to have pets with home D. At least with nxStage. I think we all do and have pictures of LONG time NxStagers with their dogs on their laps DURING their sessions... I wish i could *will* you to feel better but we know thats not happening or you'ld be better already, but i do have lots of good will going your way.
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boswife:
What should I write about next?
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author=Gerald Lively link=topic=25300.msg409170#msg409170 date=1325607823
What should I write about next?
Something that has nothing to do with dialysis, and something that has nothing to do with you.
Your writing is entertaining, and your stories are poignant, but enough of the navel gazing. I suspect it is contributing to your depression and to your wilting. If you still feel the need to drain the boil of ESRD, maybe you could write about it from a different perspective. Perhaps you could write in your wife's voice and share what you imagine she is seeing through her eyes.
Look outward, and write about what you observe.
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Hum, will think about that but I gotta say something I was jus smilen so big I thought that avatar of yours was my reflection. Lol
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this is a bit off topic, but this is excellent advice! I think I will use it for myself. I, too, tend to get in depressing, self- pity moods fairly frequently. I think it is a great idea to instead think about what my husband is going through. it will probably help my marriage a bit.
Something that has nothing to do with dialysis, and something that has nothing to do with you.
Your writing is entertaining, and your stories are poignant, but enough of the navel gazing. I suspect it is contributing to your depression and to your wilting. If you still feel the need to drain the boil of ESRD, maybe you could write about it from a different perspective. Perhaps you could write in your wife's voice and share what you imagine she is seeing through her eyes.
Look outward, and write about what you observe.
[/quote]
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How are you this morn GL? I've had a big hit of anxiety :( (sorry for neg thoughts) but.... Trying hard to kick them. Hoping your feeling even a tad on the upswing.. Im certainly working on gathering strength and willing to share when i get it ;)
im guessing this must sound kind of petty comming from the "somewhat" healthy one here, but i tell ya, this kidney crap effects us both :'(
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Ms Boswife:
Yes, I know I have been whining. If I loaded you up with my problem, please forgive.
How am I feeling today? I haven’t slept in two nights. Why? I think it has something with that bout of dehydration. I have pills for tonight. Saw the eye doctor today. Macular Denigration.
About writing something that isn’t about me or dialysis - - sorry for not having responded right away. I have to be in the mood to write like that. I do have a book I wrote in the early 1990s but that would be overkill. I thought I could serialize it by posting one chapter at a time. Won’t work.
Then I thought about writing something about our local agriculture industry, pot. And that reminded me of the time NBC was here during a forest fire (Poe Fire) and they interviewed a fellow who said he was ruined, that the fire wiped him out. The reporter asked, “You lost your house?”
“No,” the big guy answered, “It burnt my entire marijuana crop and I don’t know how I’m going to pay my bills this year.” Tom Brokaw didn’t use that piece of film. True story. Brokaw said on the Nightly News that the community was made up of “rugged individualists” and just showed a picture of the 300 lb (est) man in his bib-overhauls. No dialogue.
gl
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Yes, I know I have been whining. If I loaded you up with my problem, please forgive.
Nope...the whining prize goes to me, and I will not relinquish it.
There's no such thing as "loading up" anyone with your on IHD. If you whine and rage and vent here, then the people you love will spared all of your outrage. Come here to unload; it's safe here.
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LOL!!! boswife you are right this kidney crap does affect all of us!!! I have been really sad over Christmas not just because of dialysis but because I feel shunned by both our families. Every time I contact my brother or one of my sisters(except the one that is 17 years older than me) I feel like they do not want to talk to me at all and they never call me or contact me in any way. Hubby only has one sister who lives about 2 minutes walk from us. We go visit but often feel like we aren't welcome. They never come here. It has always been like this with her but worse since we had to put his mom in a home because of dementia. Has been some really bad feelings between hubby and his sister because of this!! We try to be as nice as we can be and get along with everybody. I really think the way they treat us has a lot to do with the dialysis. They do not understand how it has affected our lives.
Hope you feel better soon Gerald. Sorry for ranting on your post.
Don't worry about whining. We all do that and can help each other. I grow a lot of flowers and I wish one of my flower beds was a "pot" bed sometimes LOL!!
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dang it del, stupie families :( They can hurt the worst without even knowing ....
and GL where are you????? I would love to hear *anything* from ya... it's all experiences i love to read...
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Then I thought about writing something about our local agriculture industry, pot. And that reminded me of the time NBC was here during a forest fire (Poe Fire) and they interviewed a fellow who said he was ruined, that the fire wiped him out. The reporter asked, “You lost your house?”
“No,” the big guy answered, “It burnt my entire marijuana crop and I don’t know how I’m going to pay my bills this year.” Tom Brokaw didn’t use that piece of film. True story. Brokaw said on the Nightly News that the community was made up of “rugged individualists” and just showed a picture of the 300 lb (est) man in his bib-overhauls. No dialogue.
:rofl; :rofl; :rofl;
I love this story, Gerald! :clap;
Del, you can't choose your family, but you CAN choose your friends. :cuddle;
My dad is getting up in years and I know I will miss him when he is gone, but GRRRRRRR. He is so aggravating. My brother and I are amicable, but not close. Carl's sister, well, that's a long story, and I'm not going to get into it.
But friends are really the best thing all around, including you, Del.
Aleta
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I`ll tell a little story while Gerald is away. Many years ago(long before I came into the picture!!) hubby`s parents made corn whiskey. At the time they had hens. When they strained the liquid from the corn after it brewed they threw the corn outside next to the fence. the hens were free running and ate the brewed corn!! All the hens got drunk and were staggering around with their wings out trying to stay upright. They would bump into each other and fall over. I can just picture the drunk hens staggering around the yard. I wonder if the hens had a hangover!!! Too bad there wasn`t any video cameras back then!!
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Oh, funny, Del! :rofl;
My grandfather was a moonshiner in the house where I grew up. I never knew him, but the folks around there knew the house! LOL!
It was in my mother's family on the Eastern Shore of Maryland.
:shy;
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Off to the operating room once again. Angioplasty – until they get it right!! Unless they get it wrong. Yes, I caught the good Doctor eyeballing my bicep. Whatever!
This amounts to minor surgery, sort of. I go in, argue over the hospital gown, give in, lay on a gurney under warm blankets until the warmness is gone, they wheel me in, I tell a joke, I zonk out, they wheel me out, and they say something about “routine”.
The good old days are gone; we used to dance in the waist high weeds . . . er . . . grass, naked – okay, I had sneakers on – but I can dance no more. All I can do is sing: “I left my arm, in San Francisco, high on a hill, in my surgeon’s care . . . . . .
Doesn’t make sense? Neither does this surgery.
gl
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oh gl,, you always make sence to me....mabie it' an age thing???? lol Sure hope THIS time they get it right??? Wishen you the best.. check back and let us know... :grouphug; <----- yea, im into group hugging. A socialphob thats into group hugs? hum!
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Let us know how the roto-rotor job goes, Gerald.
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Not much to tell. They wheeled me in and I zonked out for most of an hour, and it was over. My forearm is sore, the bandages are still on, and the good Doctor says he thinks we got it this time (widening of the vein). I told jokes going in, jokes going out and that’s about it.
Time will tell what variety the results might be.
gl
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I hope this time did the trick! :2thumbsup;
Aleta
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Third surgery for the fistula. My wrist is still in ban after a day. Don’t wanna take it off. Yet. It feels okay. (Yes, he is a Vascular Surgeon). According to him, they angioplastied the crap out of that vein.
I would like to comment on the anesthesia; I don’t recall blinking out or missing any time, or waking up. No hangover. The Doctor said I was out for 45 minutes. Michael Jackson shoulda got some of this stuff.
So, my wife and caregiver went to Sacramento today, leaving me alone. I’m starving. Had to make my own coffee. Auggie is pestering me for play, so I took the little monster out in the forest and I believe he was wow’d by it all. Oddly enough, our big cat followed as if he was protecting that little pooch. Who knows was “pet ESP’ is at work here?
“Big cat”? After the big forest fire, we picked up a stray at the rented house. Big calico. She immediately made for a closet and dropped six new kitty-cats. We kept four. Judging by the widely different looks of those four cats, Mama-kitty got around the neighborhood. I asked who she caroused with, but she isn’t talking. She seems to like me – as long as I have a pocket full of dry pet food.
So, we are in the deep woods and those urban critters are enjoying a touch of freedom. That is, no cars, lots of places to explore and just a few faces they need to recognize. And they all know how to use the pet door.
Still starving. I wonder if I can stay alive for another four hours. I feel naked without my caregiver and wife. I wonder how much this recess-shopping trip will cost?
gl
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Someone:
If I stopped my dialysis, how long would I live?
8% kidney function at the moment.
gl
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gl, that's not an easy question to either ask or answer. I guess it depends upon whether there are other health issues at play. Still, it is a valid question and is asked more often than you think.
There have been numerous posters here on IHD who have said that they have decided to stop dialysis. I don't feel completely comfortable saying this because I don't want you to think that I am deaf to your despair, but GL, if this is a road you decide to take, please speak to your doctor and to your family first. And please consider hospice.
There seems to be a general consensus here on IHD that it is wise to give dialysis at least six months before taking such drastic action. Could you do that?
I am so sorry that you have been dealt this horrible hand. I am so sorry for all of us. :grouphug;
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I talked to my Doctor today. I talked with the supervising tech. I exploded like I haven’t in the last 30 years. I shed my frustrations and complaints about the way they treat me and the other patients and I didn’t cut through the haze they live in. There is an utter lack of respect for the patients needs and personalities. I haven’t been treat so badly since I was a kid and if you think about it, that time period includes my stint in the military.
Not only is this a total disruption of my lifestyle, which I think I can cope with, but I am treated as an insult by those who are supposed to help. I was so goddam angry they had to step back lest I reach out and crack some skulls. I made them interrupt my session for a meeting.
As an abused youth who has seen a daily beating, I know when I am just tolerated, talked down to, shunned and mistreated. The first thing they did after my rant was have me sign some papers saying if I do this again I am out the door.
My fistula is not yet developed so home dialysis is not an option. There is another dialysis center in town but I am not sure I should burn this bridge. Instead I would rather force their care. My bitch list is very long and it was not well received. My gripe included documents showing that they take too much water out in every session. Who do you know that has survived a water outtake of 6.4 kilos? All I got for that was a shrug and an insult by the nurse who did it.
I really hate dialysis and this is not living, this is nothing more than a prelude to death.
By the way, suicide is not out of the question.
gl
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So, is the new fistula working? I'm on my second one, and neither one works. So I use the catheter they put in my shoulder in the hospital nearly 6 months ago. And you know what? It works perfectly!
I shower every day. Why not? I don't shower in the sewer. And the center is clean, super clean. And I've had no infections. I tell everyone to go screw themselves if they suggest that isn't a good idea. I've checked myself out of the hospital ADA too many times to count.
Don't let the doctors ruin your life. Let them make suggestions, but don't take their word for the gospel.
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I'm sorry, whomever told you this is feeding you a giant load of BS. I started my home hemo training with my catheter and there are plenty of other individuals who do home hemo with a long-term catheter. I would push this big time with the clinic that you were looking at for the home hemo. Make them tell you in no uncertain terms why they will not let you at least start the training with the catheter. They can always bring you back in clinic for a few days to establish your buttonholes once your fistula is developed. Hell, my training nurse even came to my house every night for a week to finish establishing the buttonholes because I ran out of time off work.
I know it takes a lot of energy you might not have, but please push the home hemo option. You need to get out of your clinic and get control of your own life if that clinic is so bad - especially if they are taking off 6.4 without batting an eye.
My fistula is not yet developed so home dialysis is not an option.
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While I am not shy and retiring, I feel trapped.
To help make my point about the RIA dialysis people; “cattlekid” just outlined an option that I have never heard until now. I can’t dream these options up, someone at RIA should have told me. Why didn’t they tell me?
They answer: they don’t give a rat . . . about their patients. I have to get outta that place, dead or alive. I won’t take this anymore.
gl
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Some clinics are good, others are not. Sounds like you got a "not".
Have you researched home hemo, and if so, is this an option you'd like to pursue?
If so, tell your clinic this is what you want. If they give you reasons why you can't/shouldn't, bring that list to IHD, post it and let us have a look. We can perhaps together come up with counterarguments.
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Home hemo is not something that most clinics are going to come right out and push - heck, my own nephrologist isn't sold on it but sees that it's working for me. If you are serious about home hemo, please send me a PM and I can put you in touch with a patient advocate from NxStage that can help you work through the system.
While I am not shy and retiring, I feel trapped.
To help make my point about the RIA dialysis people; “cattlekid” just outlined an option that I have never heard until now. I can’t dream these options up, someone at RIA should have told me. Why didn’t they tell me?
They answer: they don’t give a rat . . . about their patients. I have to get outta that place, dead or alive. I won’t take this anymore.
gl
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Gerald ---- Please take cattlekid up on the offer to help you get the right contacts to have you switch over to home hemo ASAP. I enjoy having you on this board way to much and am sad to hear you this frustrated and at the end of your rope. You've told plenty of your story in your posts and you've overcome so much adversity in your past, with the help of your wife (and hopefully this board) .... you can get beyond these nimrods at your clinic. Have you told your nephrologist that they're taking off way to much fluid during your treatments ? Perhaps he can intervene on your behalf. TAKE CARE.
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Today, a day that shall live in Dialysis infamy, proceeded with angst, threats, and other demeaning comments. My appointment is 10 AM and I was on time, prompt as all patients should be. As the world turns, these are the days of our lives and know not what the immediate future holds for you and I.
I do believe my outburst of complaints last Thursday, which included a rather long list of creative expletives, was much too close to Friday the 13th. Today, the administration attempted to solidify their position by having me sign one more paper (the third one) that says another outburst will result in me being booted out of RAI and onto the street. Don’t let the door slap you on the ass on the way out. I did exploit the situation by reintroducing my laundry list of complaints.
I have a plan. The goal is home dialysis as quickly as possible - - chest catheter or fistula.
But first a question or two. Does the act of denial of service to a kidney failure patient represent a liability to the Dialysis Center? I admit that I terrified the Tech Guy with my expletive loaded tirade, but my outburst was laced with many issues that should be resolved. And, by the way, this is the third time I have met with the Center’s administration to resolve these issues. I can safely say that they are not listening.
Next question: If I leave RAI for another Dialysis Center, can RAI blackball me? Think about that; I told these people how they fail as administrators and how they lack people skills when dealing with patients. That could make the rather angry.
Whatever help you can offer, whether it is good or bad, I need to hear it within the next couple days. I have an appointment with DaVita for the purpose of opening discussions.
gl
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gl, several of our IHD members are very active in patient advocacy. One of them is Meinuk, and I am channelling her to make a suggestion that I think she would make (I am hoping that perhaps she might see your post and come to the rescue. She knows so much more about this stuff than I do.)
Why not contact the ESRD Network for the region where you live.
http://www.esrdncc.org/index/index
Scroll down to the US map, and click on your area to get the homepage for your specific network. Contact them immediately and tell them what you have told us. They should be able to get you on the right track to sorting this out.
As practice, could you list here the specific issues you would like to raise with your center? Do you have valid complaints? Post them here, and let's have a look at them. Perhaps we could help you refine your comments so that you can present them in a way that won't put the clinic on defense. But please do contact your ESRD network; this is the type of thing they should really be able to help you with.
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Some time during the Spring of 2011, my kidney’s began to fail. My doctors did not see this until mid-July when I was hospitalized for Hodgkin’s Lymphoma and had a CT Scan. By then I was semi-conscious. My creatinine was between 14 and 17 depending on who you ask. The doctors from RAI, according to my wife, said I had only two weeks to live when I was hospitalized. RAI was on the spot recruiting me for their service from the very beginning. At that point I only had an 8% kidney function. That is how I arrived to the World of Dialysis.
My working career after college, was local government. I retired from a City Manager job to deal with health issues. I specialized in organization design, small group dynamics, and management audits. In other words, I know what a dysfunctional service organization looks like.
Issues with RAI at Chico, California:
1. In general there is an attitude of dismissal among the staff that directly services the patients. This does not include the two doctors. In practice, a patient is seated, hooked up and four hours later, is unhooked. During that time, the patient sits, alone, unaided, unless they can flag down a technician or an alarm sounds. There are TVs that sometimes work. We begin.
2. A patient arriving at the appointed time, enters a lobby equipped with a receptionist window where no one is there, a restroom, and a locked door. It is the habit of patients to knock on the door. The trick is to catch the attention of a technician on the inside. Knocking is problematic, it usually does not work – unless the knock is loud and hard. I took to kicking the door and that upset the staff. So, there is a telephone for arrivals to call in. On occasion that phone is answered promptly. I cannot hear a telephone voice so I opt to bang on the door. There is a sign instructing arrivals to use the phone but I cannot see unless I have my reading glasses on. And I have failing eyesight. The staff told me yesterday that it is state law that the door to the "pit" be locked. This cannot be true because on more than one occassion the staff places a garbage can to prop that door open. The real problem is that the receptionist window is vacant. The operation of the lobby is unprofessional.
3. Inside, the room is a large U-shaped arrangement with about twenty machines and a centered counter arrangement. Windows line the walls behind these dialysis machines. I have an eye sensitivity problem due to a Macular Degeneration and cannot look into a glare without gaining a headache described to me by my eye Doctor as Ophthalmic Migraine. I requested a seat/machine against the south wall and I was ignored. Instead I have been continually place facing those windows. My repeated requests have been ignored until this week, after I raised a ruckus ( a real loud outburst on my part ).
4. At the beginning, there was a meeting of the staff and myself (and wife) whose purpose seemed to be the signing of a large stack of papers. I was still suffering from the effects of toxins in the blood stream. I protested the signing of anything that I could not read. They insisted. I discovered that I was unable to even sign my name. But they insisted. I told them to stuff it. My wife signed a few of these papers. I know that California law advises that a person read the documents before signing. This was a book sized stack of paper. At that point I did give a damn if I lived or died due to this delirious state of mind. They let me in anyway.
5. I have repeatedly requested time with the Social Worker there. She never comes. My wife is a social worker; I have prepared budgets for over a hundred social workers in the employ of the county here, I know social workers. This lady is incompetent and is afraid to talk to me. The Social Worker in this organization should be my most frequent interface with RAI. I demanded to see her and have her out in the “pit” talking to all patients. They promised to begin that practice next week.
6. Twice, due to inattention, the nurse has taken out 6 or more kilos of water. Until you have this happen to you, you have no idea what this does to a Human Being. One male nurse has responded to my complaint and we consult as he sets up the equipment. This works very well. The other Nurse has an attitude and will not consult. Yesterday, I met with the Administration and forced this issue with said nurse present. After, we went out to get hooked up. She said to me. “How much do you to take out?” This is not how to run a dialysis center. The entire point was to “consult”, not have a patient directed service. Her tone can be describe as facetious. She is supposed to be the professional.
7. I published a small list of complaints on this website a few weeks back. The RAI staff reacted poorly to that list. It was the second time I forced a meeting with the doctors and employees there. This latest event will be the third time I have forced them to listen to complaints. Having overheard the shouting, an old black man-patient said to me, “I am behind you all the way.” His complaint was inattention. Another black man told me he takes “horse tranquilizers” so he can sleep through the inattention. He has a fistula and refuses to allow the staff to touch him. That is how bad it gets.
8. In the early months I had difficulty obtaining information. I did complain regularly about that. During meeting #2 we reached an agreement. I now get blood work and diet info as they are generated. Why did I have to ask repeatedly?
9. I am just now hearing about home dialysis for those with a chest catheter. Even as I asked about this yesterday, they seemed puzzled at the idea. So, I requested information on what RAI can do for me in that regard. The betting odds are that I will hear about this again. Why haven’t they told me about this before? Why do I have to use “I Hate Dialysis” to obtain critical lifestyle data? Where are the health professionals?
10. Water. For several months they told me to drink no more than 32 ounces a day. During this period, once, they took out 6 kilos. It turns out that I urinate as much as any normal person with a working kidney, and this water restriction was unnecessary. I drink water, I pee. I don’t drink water, I don’t pee. I have the overwhelming impression that they treat all patients with one template. I brought this up with the Doctor and she agreed that I could drink up to 50 ounces of liquids per day. It seems my 8% kidneys can handle this or I don’t have a kidney condition. Yes, we have had a CT scan of my kidneys and it was very interesting. They were searching for kidney stones. There were none. This was done by my Urologist who offered no comments other than the absence of a kidney stone.
11. More water. There is a staff nurse who conducts the training for home dialysis. We asked her about our domestic water supply which comes from two wells on the property; one is 345 ft. deep, the other is 200 feet deep. We filter the particulates and have lived on this water for 35 years now. The nurse thinks poorly of non-municipal water. She says it may be too hard. We have a water softener. She says this may be too salty. We agreed to have everything tested. We contacted our contractor about plumbing in a new line dedicated to whatever condition the nurse requires. We haven’t heard from here for over a month. Now I read on “I Hate Dialysis” that softened water is acceptable. I see this on the DaVita website as well. This indefinite feedback from the nurse can be costly. What is going on?
12. There are patients in the “pit” that are seriously ill. Several have coughing fits. In my lifetime I have a weakness for respiratory problems (I have never smoked) and am subject to bronchitis. During my first encounter with Hodgkin’s Lymphoma I caught a bout of bronchitis and I might say that this was a difficult time for me. So, I asked not to be seated to someone who is constantly coughing. There are two isolated positions at the RAI pit. These coughing patients are never placed in isolation. At the very beginning I requested distance from these people. It was quickly forgotten. I am out in the pit next to these people and the isolation rooms go to ordinary patients. For the countless time, I brought this up yesterday. They placed me in a corner where the chair either sits directly up or lays down flat. No in between. Attitude.
13. The Doctors. We see a doctor once a week. Right there in front of the other patients. We talk about bowel movements, urination and other essential health data that I would rather keep to myself. Everyone on that center now knows how often I pee and in what quantities. Although I haven’t raised the issue, I want to know why?
Despite this list and in a category I would call “otherwise”, there is a prevalent attitude. Patents are treated as “things”, are demeaned, and I am not the only patient to think this way. In writing a document such as this, one cannot describe each and every incident. I describe this as a prevailing attitude among “some” of the key staff.
The mission of RAI is not patent first and I do not march to the drumbeat of the fascist policies of this place, and I certainly am not shy about patient advocacy. I plan to meet with DaVita on Monday and explore my options with a goal aimed at home dialysis. We live 30 miles from town and this seems to be the most reasonable approach. Yet, the bridges involved seem to be burnt. I am concerned about the residual effects of this. Would DaVita ban me for being a disturbing factor? How long would I last without dialysis? Long enough to train for home dialysis? What about these other patients? Am I so jaded that I really am a disrupting element? And, yes, we will be locating the nearest office for ESRD.
How does this list fit wsith your ideas of patient abuse?
gl
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I did not proof that post. If you have trouble reading it, comment and I will respond.
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I botched that post so bad I feel a need to repost. Here goes:
Some time during the Spring of 2011, my kidney’s began to fail. My doctors did not see this until mid-July when I was hospitalized for Hodgkin’s Lymphoma and had a CT Scan. By then I was semi-conscious. My creatinine was between 14 and 17 depending on who you ask. The doctors from RAI, according to my wife, said I had only two weeks to live when I was hospitalized. RAI was on the spot recruiting me for their service from the very beginning. At that point I only had an 8% kidney function. That is how I arrived to the World of Dialysis.
My working career after college, was local government. I retired from a City Manager job to deal with health issues. I specialized in organization design, small group dynamics, and management audits. In other words, I know what a dysfunctional service organization looks like.
Issues with RAI at Chico, California:
1. In general there is an attitude of dismissal among the staff that directly services the patients. This does not include the two doctors. In practice, a patient is seated, hooked up and four hours later, is unhooked. During that time, the patient sits, alone, unaided, unless they can flag down a technician or an alarm sounds. There are TVs that sometimes work. We begin.
2. A patient arriving at the appointed time, enters a lobby equipped with a receptionist window which is vacant, a restroom, and a locked door. It was the habit of patients to knock on the door. The trick is to catch the attention of a technician on the inside. Knocking is problematic, it usually does not work – unless the knock is loud and hard. I took to kicking the door and that upset the staff. They claim it bothers the patients but the patients are the people kicking the door. So, there is a telephone for arrivals to call in. On occasion that phone is answered promptly. I cannot hear a telephone voice so I opt to bang on the door. There is a sign instructing arrivals to use the phone but I cannot see unless I have my reading glasses on. And I have failing eyesight. The real problem is that the receptionist window is vacant. Very unprofessional for a medical service office.
3. Inside, the room is a large U-shaped arrangement with about twenty machines and a centered counter arrangement. Windows line the walls behind these dialysis machines. I have an eye sensitivity problem due to a Macular Degeneration and cannot look into a glare without gaining a headache described to me by my eye Doctor as Ophthalmic Migraine. I requested a seat/machine against the south wall and I was ignored. Instead I have been continually placed facing those windows. My repeated requests have been ignored until this week, after I raised a ruckus ( a real loud outburst on my part ).
4. At the beginning, there was a meeting of the staff and myself (and wife) whose purpose seemed to be the signing of a large stack of papers. I was still suffering from the effects of toxins in the blood stream. I protested the signing of anything that I could not read. They insisted. I discovered that I was unable to even sign my name. But they insisted. I told them to stuff it. My wife signed a few of these papers. I know that California law advises that a person read the documents before signing. This was a book sized stack of paper. At that point I did not give a damn if I lived or died due to this delirious state of mind. They let me in anyway.
5. I have repeatedly requested time with the Social Worker there. She never comes. My wife is a social worker; I have prepared budgets for over a hundred social workers in the employ of the county here, I know social workers. This lady is incompetent and is afraid to talk to me. The Social Worker in this organization should be my most frequent interface with RAI. I demanded to see her and have her out in the “pit” talking to all patients. They promised to begin that practice next week.
6. Twice, due to inattention, the nurse has taken out 6 or more kilos of water (6 kilos is 12 to 15 pints of water). Until you have this happen to you, you have no idea what this does to a Human Being. One male nurse has responded to my complaint and we consult as he sets up the equipment. This works very well. The other Nurse has an attitude and will not consult. Yesterday, I met with the Administration and forced this issue with said nurse present. After, we went out to get hooked up. She said to me. “How much do you want to take out?” This is not how to run a dialysis center. The entire point was to “consult”, not have a patient directed service. Her tone can be describe as facetious. She is supposed to be the professional.
7. I published a small list of complaints on this website a few weeks back. The RAI staff reacted poorly to that list. It was the second time I forced a meeting with the doctors and employees there. This latest event will be the third time I have forced them to listen to complaints. Having overheard the shouting, an old black man-patient said to me, “I am behind you all the way.” His complaint was inattention. Another black man told me he takes “horse tranquilizers” so he can sleep through the inattention. He has a fistula and refuses to allow the staff to touch him. That is how bad it gets.
8. In the early months I had difficulty obtaining any information. I did complain regularly about that. During meeting #2 we reached an agreement. I now get blood work and diet info as they are generated. Why did I have to ask repeatedly?
9. I am just now hearing about home dialysis for those with a chest catheter. Even as I asked about this yesterday, they seemed puzzled at the idea. So, I requested information on what RAI can do for me in that regard. The betting odds are that I will not hear about this again. Why haven’t they told me about this before? Why do I have to use “I Hate Dialysis” to obtain critical lifestyle data? Where are the health professionals?
10. Water. For several months they told me to drink no more than 32 ounces a day. During this period, once, they took out 6 kilos. It turns out that I urinate as much as any normal person with a working kidney, and this water restriction was unnecessary. I drink water, I pee. I don’t drink water, I don’t pee. I have the overwhelming impression that they treat all patients with one template. I brought this up with the Doctor and she agreed that I could drink up to 50 ounces of liquids per day. It seems my 8% kidneys can handle this or I don’t have a kidney condition. Yes, we have had a CT scan of my kidneys and it was very interesting. They were searching for kidney stones. There were none. This was done by my Urologist who offered no comments other than the absence of a kidney stone.
11. More water. There is a staff nurse who conducts the training for home dialysis. We asked her about our domestic water supply which comes from two wells on the property; one is 345 ft. deep, the other is 200 feet deep. We filter the particulates and have lived on this water for 35 years now. The nurse thinks poorly of non-municipal water. She says it may be too hard. We have a water softener. She says this may be too salty. We agreed to have everything tested. We contacted our contractor about plumbing in a new line dedicated to whatever condition the nurse requires. We haven’t heard from her for over a month. Now I read on “I Hate Dialysis” that softened water is acceptable. I see this on the DaVita website as well. This indefinite feedback from the nurse can be costly. What is going on?
12. There are patients in the “pit” that are seriously ill. Several have coughing fits. In my lifetime I have known about a weakness for respiratory problems (I have never smoked) and am subject to bronchitis. During my first encounter with Hodgkin’s Lymphoma I caught a bout of bronchitis and I might say that this was a difficult time for me. So, I asked not to be seated to someone who is constantly coughing. There are two isolated positions at the RAI pit. These coughing patients are never placed in isolation. At the very beginning I requested distance from these people. It was quickly forgotten. I am out in the pit next to these people and the isolation rooms go to ordinary patients. For the countless time, I brought this up yesterday. They placed me in a corner where the chair either sits directly up or lays down flat. No in between. The chair is in need of repair. Attitude.
13. The Doctors. We see a doctor once a week. Right there in front of the other patients. We talk about bowel movements, urination and other essential health data that I would rather keep to myself. Everyone on that center now knows how often I pee and in what quantities. Although I haven’t raised the issue, I want to know why?
14. I have discovered that binder pills make no difference in my bloodwork. All of my numbers are good. So, I went a full month without binder pills, drank beer and ate whatever I wanted. My numbers are still good. What is going on?
Despite this list and in a category I would call “otherwise”, there is a prevalent negative attitude toward patients. Patents are treated as “things”, are demeaned and ignored, and I am not the only patient to think this way. In writing a document such as this, one cannot describe each and every incident. I call this as a prevailing attitude among “some” of the key staff.
The mission of RAI is not patent first and I do not march to the drumbeat of the fascist policies of this place, and I certainly am not shy about patient advocacy. I plan to meet with DaVita on Monday and explore my options with a goal aimed at home dialysis. We live 30 miles from town and this seems to be the most reasonable approach. Yet, the bridges involved seem to be burning. I am concerned about the residual effects of this. Would DaVita ban me for being a disturbing factor? How long would I last without dialysis? Long enough to train for home dialysis? What about these other patients? Am I so jaded that I really am a disrupting element? And, yes, we will be locating the nearest office for ESRD.
How does this list fit with your ideas of patient abuse? Am I just a disgruntled patient?
gl
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I certainly would not want to be a patient at your clinic, gl, and I'd be doing everything possible to get out. It is very difficult to change the prevaling attitude in a clinic without booting all of the employees, techs and managers, so I don't know how successful you would be in your attempts to get them to be nicer to you.
I find it remarkable that there is so often no one at reception. It's entirely possible that it IS state law in CA to keep the door to the treatment area locked; this is for the security of the patients, and I imagine that one reason staff keeps a garbage can there to keep the door open is because they don't like this particular state law. It's inconvenient for them to keep answering the phone, which I can understand, but they should have reception manned. That's the first thing they should do, and it shouldn't be that hard a situation to rectify.
Your clinic seems to be completely ignoring your eye/vision issues, and that's just cruel. If they aren't going to give you a seat along the south wall, would it be possible for you to wear sunglasses to protect you from the glare? You shouldn't have to do that. I'd be interested to know if there is some good reason why they can't seat you where you want, especially if your doctor agrees that your eyes are fragile. Maybe you could ask them why.
I understand your concern about being considered too non-compliant to keep at the clinic. This is what you need to discuss with the ESRD network for your area because I am not entirely sure how this stuff works from a legal point of view. I can't imagine how treatment can be denied you, but I do know of cases where specific clinics have refused to treat certain patients, but it doesn't follow that a patient would be refused treatment from all other clinics. I don't want to steer you wrong here, so I'm not going to say much more about it, OK?
Privacy doesn't seem to exist in any clinic; your complaints in this regard are all too common, I'm afraid. When my mom was on dialysis, she'd complain about the same thing.
I am horrified that you were forced into signing a shedload of papers when it was clear that you were medically unable to digest their contents. I've worried a lot about this myself, and I have yet to figure out a way to politely refuse to sign anything until I had a clear enough head. Do you know what you may have signed that you wish you had NOT signed, given the chance to think about it?
After rereading your post one more time, I am convinced that you need to cut your losses, find a new clinic or begin dialyzing at home. Is your eyesight good enough to allow you to self-cannulate? That's my only real concern about his particular pan. I think you are one of those people who would do much better taking charge of your own treatment.
You ask a very interesting question...are you so jaded that you've become a disrupting element? Your clinic may deserve every "disruption" you throw at them, but is this the best way to get them to listen to you? If you yell, what people hear is not what you are saying but, rather, how loudly you are saying it. Do you think this might what is happening to you/your clinic? You've asked an honest question, and it deserves an honest answer.
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The issue of my behavior and/or reaction to an accumulation of frustration is probably unforgivable to the casual observer and the staff. They have, obviously taken a defensive position. I can’t help that. I simply exploded at the putdown from the staff for pounding on the door trying to get inside. My own head says, “Enough, enough, I have had enough.” Yes, I am worried that I came off as a disgruntled patient might. I think I have a case.
Yes, I plan to leave RAI as soon as possible. I hope to avoid collateral damage such as a ban from alternative service providers. For that reason I plan to discuss this with ESRD and DaVita. Also, I plan to inform my Doctor of a change to another Doctor, since this RAI franchise is owned by this Doctor.
My approach at DaVita is planned to be home dialysis training with in-house dialysis for as long as necessary - - then I am out the door.
As much as I regret my explosion, I must say it was an automatic reaction. It had no pre-thought. I must ask myself the question, “How long am I supposed to put up with disregard?” I am a human being and I have ego and pride, and I will never submit. ‘Tis the basic idea of freedom.
Some rebuttals: If the door is held open by a garbage can at the same time they tell me they cannot open the door without a phone call per state law, who is breaking the law?
If all of these things can transpire, what is there that I am not aware of?
gl
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Gerald, I am sorry that you are going through all of this nightmare. I would get out of there. I do not think you have to worry about being banned from other units, and many have told about transferring out of an awful clinic to one that perfectly suits their needs. If the doctor owns the clinic and is doing nothing to address these unacceptable issues, then he/she is as much to blame. So, absolutely, switch doctors as well.
Another resource if you do find you are being denied dialysis, treatment which you have a legal right to be able to access, go to dialysisethics.org or PM plugger (Chris) through IHD. He has experience battling the horrible clinics. I do know that these behavioural contracts are what they try with "difficult" patients (in quotes because I don't believe you are such a patient) and creates a paper trail for them to use to bar you from the premises. You MUST by law be able to receive dialysis, and home dialysis is seen as a good option for people who, for whatever reason, do not get on with their unit. I know these places always craft everything to make it seem like its entirely the patient's fault, and that can really play with your head after a while. Get away from them, it is not worth the upset to stay on principle. They sound downright monstrous to me.
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Gerald --- as others have said on this board, you *are* a customer, not just a patient ...... and as such, I think you have a right to try to tell them your issues and hope they would work to resolve them (in business, it's never possible to satisfy *every* customer and that's why there are other choices).
I think you have a great plan in mind. Go to ESRD and Davita and explain to them that you're willing to do in center dialysis only for as long as it will take for you to do the training for home hemo. (I think you hate in center dialysis more than dialysis itself .........you've certainly been through a great deal in your life already and I *think* if you're able to get to a modality that will provide you more freedom and self control than in center does, you'll get past some of this).
It is sad (and a bit scary) to hear the stories about bad customer care at dialysis centers. I'm still pre-D and it all makes me quite nervous about my own choice for in center. (I live alone and don't feel I am in a position to start this journey on my own with either home hemo or PD). I sure hope my experiences with the people who work at at the center are decent. Having to start this at all is traumatic enough without dealing with poor workers.
With regards to not having someone in the reception area --- Is that a center requirement (to have a receptionist) ?? If so, you can report them .... particularly if the garbage can thing is really a security risk or not allowed.
My advice - Keep looking for other options to move to another center (I don't think you'll be 'banned' for having a 'bad attitude' if you can clearly communicate what you are looking for an what you need .... honestly, like I said above ..........you're a customer and ask long as another center is able to get you in their seat and generate some billing ......they will take you). Until that happens, please *try* to keep working with the center you are at. Requests to be seated in particular seats due to your eye problems and respiratory history are completely fair. The fact they're not honoring them seems to mean they're not taking you seriously. I say that you should 'pull out the big guns' and get one of your doctors (or more if you have them) to write a note saying THEY are requiring you be seated in a place that will be satisfactory for both your eye and your respiratory conditions.
Of course, if your currently center really is being douchey about it, they may make you wait longer for your 'required' seating or do something else miserable .........but like I said, do your best until you can get set up in another center and then give them the big F.U.
One last thing ........... when you do go to the Davita, see if you can 'chat' with some of the patients that are on the floor while you're there. They may be able to give you a bit of a 'heads up' on that center as well. And be up front about your "demands" ..........talk to the center manager and get a commitment that they'll seat you regularly in a seat that suits both your eyes and respiratory concerns (frankly to put it bluntly, your current center is being dicks about that .............. you are scheduled to be there regular days and regular times, how hard would it be to say (in general) ..."This is Gerald's seat" when he's here M-W-F from 11AM to 3PM (or whatever) ..... seems really petty of them. They could certainly be more organized.
And being Pre-D .......the whole fluid thing kind of still confuses me .......... Can't you say "I'm feeling pretty good, let's start by taking of 3 kilos (6 pints of water) and see how it goes" ........... I really hope I'd be the one to control this (at least as much as they do). Personally 'patient directed care' sounds pretty good to me !!
Anyway Gerald --- You have my best wishes. I hope very soon that you are regaling us all with your stories about your home hemo training and implementation. VERY SOON I HOPE. Hang in there. You have every right to demand better care and concern from your clinic. You may be right that they think you're a disruptive patient ........I think you're AWESOME. Keep up the fight to get what you want and deserve.
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One effect of this troublesome time, has been the loss of my sense of humor. If this transfer works I may be back with the jokes. Perhaps the RAI dialysis center thinks I am a buffoon, perhaps they really are negligent service providers.
Disconnecting will not be easy but I agree that how my doctor reacts is key. In any case, I’m outta there as soon as possible. They have driven me to the edge and it is very dark on the other side.
Thanks for the positive reiforcement.
gl
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Oh, Gerald,
You really, really do need your sense of humor. :cuddle;
I hope you can get this resolved ASAP. Not only for you, but I miss your lively banter. I'll know things are looking up when that returns.
Aleta
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Wishing you a cool and determined head GL and a light at the end of the tunnel. No train jokes allowed. Hoping you encounter someone generous enough to help and maybe even an entire clinic full of good people. I know there is an idiot everywhere you go, but you need the ratio of idiot:non idiot to shift in your favour.
Its not easy to be the best person you can be (cool headed, calm, reasonable, helpful, amusing) even when you're well, let alone when you're dialysing. I wish you inspiration, determination, clarity, and opportunity.
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While poor behaviour shouldn't be "condoned", I do think that a new dialysis patient should be treated with the utmost compassion. I suspect that too many clinic staff just do not know how devastating starting dialysis can be. Maybe they don't have either the imagination nor the humanity to be able to put themselves in your shoes. You would think that people who work with dialysis patients would know better, but maybe the job just sucks the empathy out of them, leaving them as dry husks without any feeling at all.
This probably sounds naive, but if I were a social worker or a tech or manager in a dialysis clinic, and if I had a new patient who seemed this distraught and unhappy, it wouldn't occur to me to chastise him/her. I don't understand why these people don't see your behaviour as a sign that they're crap. You are not expressing your displeasure because you have nothing better to do.
We patients do have to be our own best advocates, and that is not always easy to do when you are ill, frustrated and frightened, not to mention depressed. It is in our best interests to present our complaints in a logical, diplomatic manner, but it's not always possible to do that. When you feel so out of control of your life, it is easy to resent those who you perceive have wrested that control from you. This is the point that natnnnat is making, and she is right.
Keep us informed on how things are going. Stay Calm and Carry On.
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I have been negotiating a complaint with the health system in my state ever since my mother in law died. Its unbelievably frustrating and depressing, and I can't actually trust myself to talk to "them" face to face, because I believe if I did, that I would rapidly morph into an hysterical, screaming, crying, punching, name-calling banshee. I would probably enjoy it too. But it wouldn't be good for the complaint process. I feel like I have to be as rational as possible, and find ways to "prove" that my family "suffered" as a result of actions on the part of health system employees. The irony is just bizarre. So I've made all my interactions written, and made them write back. Maybe this isn't the best way to go, but its the only way I could proceed with the amount of calm wisdom I have at my disposal.
In particular, regarding one's interactions with health systems, I think that patients and families are perpetually on the back foot, because you don't want to get them off side. Well, I don't at any rate. When my mother in law was still alive, I desperately tried to keep the mounting frustration of the family from showing to nurses and doctors, because Marge needed all the care she could get, and they already, quite clearly thought that we were major pains in the ***. If they knew we were all ready to kill them, they would probably have given Marge even worse treatment. So I never told them off to their faces. In a way, I envy you for letting your feelings show. If I was the patient, maybe I would be less careful and more demonstrative.
And though it makes sense in some ways to say "I am the consumer, do as I want", in fact patients are not like consumers, because patients are sometimes ill, unconscious, have short timelines, need urgent care, or don't have the time, money, energy or opportunity to shop around. They can't always just take their money elsewhere.
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Gregory came in to see what I was up to in here. I read my post and MM's to him. He said, he's seen people "go off" in the dialysis clinic, and then they got "the treatment". This is where attention becomes lessened, one moves slower in the queue, one is seen last, etc etc. It probably isn't helping to tell you that they used to call it "the treatment". The way he describes his old clinic sounds like a novel by Kafka sometimes. His tactic was to learn how to do his entire treatment himself, be very self sufficient, and be co-operative and amusing. But I also recall (he's wandered off now, worrying because he reckons his kidney has blown a gasket or the rings are leaking and he wont be off dialysis for much longer).. I recall that when he started dialysis, they told him he was an "angry young man". But later he must have made friends with them somehow, and he is still on good terms with one of the nurses from those days. So that is why I hoped for you to find the non-idiots somewhere in all this mess, and to recover your usual sense of humour and maybe cool head. Maybe in your new clinic, but if all else fails, in this horrible one you are in now, until you get plan b sorted out. You'll need a strong nerve and a cool head for some time now.
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Met with DaVita today. Will be changing dialysis service providers by the end of the week. Goodbye RAI.
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That's good news, Gerald! (and I love the picture! You are quite the handsome guy!)
Aleta
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Awesome! I am so excited. If there is any issue with the DaVita clinic and getting up and running with NxStage, my offer still stands to put you in touch with the NxStage patient advocate.
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Eeeeeeeaaaaahyahooooooooo. Wowie Zowie! Hot banana sundae with a cherry on top (not really)!!!!!!!!!!!!!! Yeeeeowie by goooooollllleeee!
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Eeeeeeeaaaaahyahooooooooo. Wowie Zowie! Hot banana sundae with a cherry on top (not really)!!!!!!!!!!!!!! Yeeeeowie by goooooollllleeee!
Honk! Trying to imagine the dignified gentleman in the picture carrying on like yosemite sam. Failing.
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Congrats Gerald. Your home hemo adventure with NxStage is about to begin !! Keep us all posted.
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Eeeeeeeaaaaahyahooooooooo. Wowie Zowie! Hot banana sundae with a cherry on top (not really)!!!!!!!!!!!!!! Yeeeeowie by goooooollllleeee!
Honk! Trying to imagine the dignified gentleman in the picture carrying on like yosemite sam. Failing.
:rofl; :rofl;
Don't ya just love the exuberance! :clap;
Aleta
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As many of you know, I have had a falling out with my dialysis service, RAI. During the six months there, they have made two critical mistakes, which I presume were due to inattention. Yes, twice they took out more than 6 kilos of water during a single dialysis session. And yes, the staff did not undertake measures to correct what I have identified as unprofessional. It has been up to me to ask the key questions during the hookup. I am not a doctor.
The other game in town is DaVita. I toured their facility and it seems sterile compared to RAI, a good thing. I have talked with the person who trains home dialysis patients, they social worker and I have asked questions as we roamed through the facility. It all seems to be the best option available at this moment.
Our plan is to take dialysis until my fistula develops, then go through the required training, then I will be home. Unless something better comes along. Perhaps my fistula will be so good that I could drive myself to the center and back, thereby freeing my wife’s time. Who knows?
My concerns per the confrontational meetings at RAI, was patient care. Through that lens I surveyed DaVita. There are, no doubt, other aspects that may be of concern. I have been searching this forum for comments on DaVita’s patient care. I have read much on their corporate practices and those comments were universally negative. A few have questioned their patient care practices.
Thursday will be my last day at RAI. Those people have cautioned me about DaVita without being specific. This may be organization jealousy. I don’t know. I would appreciate any comments on DaVita patient care you might have - - good or bad. Give me a clue on what to watch out for, anything that might be enlightening.
Gerald Lively
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Gerald, I've been reading posts for a long time from IHD members who are Davita patients. Some have had bad experiences while some have had good ones. I would hate to condemn all clinics affiliated with the big providers, but studies do show that too many clinics put profit above patient care. However, as you have learned, so often it is the prevailing attitude of the nurses/techs/managers that dictate how a specific clinic is run, so you are best placed to see how THIS particular clinic is run. If the manager is efficient and has excellent patient care as his/her priority, then you will probably be much better off than if you were in a not-for-profit clinic run by an idiot.
My mother was a patient at a Davita clinic in Houston. I know she liked the techs who worked with her. She has family living in cities from California to Florida, so being able to travel was important to her. She had a house in Mississippi, and she'd come up here to Chicagoland to visit me at least once a year. Her social worker was quite efficient in making arrangements for treatments away from home.
Her clinic brought in a guy from NYC to set up an inclinic nocturnal practice, and he had approached my mom to see if she might be interested. I encouraged her to really think about it as I was just then learning more about optimal dialysis. She asked the head nurse about it, and SHE nixed the idea; I never knew why, and my mother wasn't the kind of patient to ask questions about her treatment. She just did as she was told. I don't know if that was a good thing or a bad thing. But I am very curious to know why it was unilaterally decided that my mother could not have nocturnal at the clinic.
Gerald, this is your opportunity to start with a clean slate. Do try to go into this with a cooperative mindset, and try to see these people as your team. You are the head coach, calling the plays, and your neph is your offensive coordinator. He is the one to tell you what play would have the best chance of success, but ultimately, it is YOUR team and YOUR responsibility to take all advice and to make the best choice. The clinic staff are just the members of your team; they are the ones who are there to help you reach your goal...victory over immediate death by ESRD. They are not supposed to be the opposition.
If it is home hemo you eventually choose, do what you have to do to get trained and then get out. Try not to be sidetracked by the incidentals unless you ultimately decide to stay in clinic. Of course, patient safety is not a mere "incidental", but you know what I mean. Don't sweat the small stuff.
BTW, my mother just about always drove herself to and from dialysis up until she passed away at 81.
In summary, I'd advise you to keep your eyes open along with your mind.
Now that you have toured the Davita clinic, what impressions did you come away with? How did the people seem? Did they seem nice? I toured a facility near me, entirely spontaneously, and the social worker took the time to talk to me. He was very enthusiastic about home hemo, and he was thrilled that I had already looked into it. He recommended that I take a look at Dr. Agar's site, Home Dialysis Central, and he was very impressed when I told him I had already seen it. He was generally a very nice, upbeat man who encouraged self care for his patients. It lead me to believe that the social worker can provide a real good clue to how patient centered a particular clinic strives to be. What was the social worker at this new Davita clinic like?
If you
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DaVita has a nice sign out on the street.
Okay, so that isn’t on the evaluation criteria. It was the Social Worker who gave us the information about DaVita and conducted the tour. I noticed that the patient/help ratio seemed to be 3:1. The facility was clean and organized. So it seemed.
In making this move I have to change Doctors and I have yet to meet with the new Doctor. Will do so Friday when we meet with staff for the purpose of admission. My old Doctor, the one at RAI, is the person who said, “We are better Nephrologists than the Doctors at DaVita.”
You sound like my wife when she says, “Now, be good. Don’t go in there and pick a fight.” Well, consider this; I never complain unless I perceive a wrong.
So, nano, nano!
gl
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You sound like my wife when she says, “Now, be good. Don’t go in there and pick a fight.” Well, consider this; I never complain unless I perceive a wrong.
Ah, now this is a very telling statement. You never complain unless you "perceive" a wrong. Are you claiming that all of your perceptions are truth? Can you not see that if you are tired, sick, angry and frustrated, then your "perceptions" might be way off?
You SHOULD complain if there IS a wrong. But make sure there really IS a wrong...
Your wife is a wise woman. :P
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As Stephen Hawkings recently said, “We will never understand women,” wife included.
All of life experiences and training has been aimed at finding the hole in the doughnut. “Once a problem is well identified, it is half resolved.” While I admit that I act at times, like a bull in a china shop, I prefer direct answers to direct questions. Be vague and my suspicions are aroused. I fail to see how anyone can go through life without a survey of the future (immediate or otherwise) to identify potential pitfalls. Yep, I am not a trusting fellow. I have been betrayed by everyone I have ever trusted at least once. Some get more than one chance but not many.
In accordance with the patient’s bill of rights per Medicare, RAI failed me in the following areas:
1. I was not informed of my rights and responsibilities.
2. I was not treated with respect.
3. My right to medical record privacy was violated.
4. No one informed me of home dialysis for those with a chest catheter.
5. I have seen the social worker only once in six months.
6. Test results were not immediately available until I complained.
7. I should have been informed at each and every hook-up about how much water will be removed.
If this list does not make a person a bit skeptical about dialysis providers, then nothing will. I have exhausted my list of phone inquiries, internet searches and I have read all of the documents I could find so that I will be the best informed patient to enter the halls of DaVita. Trust no one and no one will deceive.
I have a never ending need for input.
gl
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You are now a much more experienced patient than you were 3 months ago. Make your experience work for you.
Take this list of complaints with you to Davita. Tell them courteously but pointedly that these were the areas in which you felt RAI was lacking, and what will Davita do differently? Give them the opportunity to address your concerns now rather than later. The complaints you listed are not difficult to resolve.
Ask how available the social worker will be.
Information really is power. If I were you, I'd be wary of clinics where they discourage patient information and education. If your clinic encourages self-care and is happy to give you all requested answers to your questions regarding your treatment, then you know you will be with people who value your judgment and who trust that you are listening to your own body.
Try not to go into this expecting failure and dismay because if you do, you may face a self-fulfilling prophecy. You're a smart man, and I am sure you will find a way to make these people work FOR you, not against you.
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Also Gerald --- make sure Davita knows your needs/requirements for handling your special eye and respiratory needs as well. It will be helpful for you to make sure they're working to accomodate your needs from the first visit and from there, they should be able to hopefully have their 'Gerald space' once you've got your routine scheduled. GOOD LUCK.
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You guys don’t give me enough credit. Friday I will meet the staff at DaVita and that includes the Doctor, Staff Director and the Social Worker and I expect others to be there. At that time I will be asking my questions about service. Once agreed, I will become the lighter side of Gerald. There is a season for all things; a time to learn, a time to be calm, and a time to see the door of opportunity. This is my season for relaxation and a capitulation of all things to my spouse. I listen more than I don’t. I try not to live in the past even if the future is short. Yet, I need to spread the straw evenly before I sleep.
Gerald
PS: Todd – why do you have my photo as your avatar?
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Go placidly amidst the noise and haste, and remember what peace there may be in silence. As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even the dull and the ignorant; they too have their story.
Avoid loud and aggressive persons, they are vexations to the spirit. If you compare yourself with others, you may become vain or bitter; for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs; for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals; and everywhere life is full of heroism.
Be yourself. Especially, do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment it is as perennial as the grass.
Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here.
And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be, and whatever your labors and aspirations, in the noisy confusion of life keep peace with your soul. With all its sham, drudgery, and broken dreams, it is still a beautiful world. Be cheerful.
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You guys don’t give me enough credit.
I can't speak for others, but as for myself, no, quite the opposite. I give you all the credit in the world. I know that underneath the understandable frustration and even anger, there is a very smart and capable man who knows how to get what he wants.
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...underneath the understandable frustration and even anger, there is a very smart and capable man who knows how to get what he wants.
And underneath the grey top is a rippling set of greasy sixpacks, according to your remark about Todd's avatar.
Re the impending new clinic: Hooray! Here's to a gentle and easy ride. Go you good thing. etc.
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Desiderata....truer words have not been written. "As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even the dull and the ignorant; they too have their story.".....easy to read, hard to follow. I am an Old Hippie Woman, I believe in peace and Love, I believe in tolerance, I believe that all should be civil and kind spirited,..........and YET when people are apathetic, mean spirited or just hateful I have a small teeny tiny tendency of being a bit Uncivil (hubby says I'm BRUSK). Talking in a not quiet voice I tend to give people a piece of my mind that they didn't request. I believe in Sunshine and Moonbeams but when folks are mean-spirited or have attitudes that provoke homicidal tendencies I sit not quietly in the corner thinking of rainbows and puppies but rather let my tongue out for a good wagging. People should be nice, people that are paid to take care of people should be extra nice, people that take care of sick people need to be empathetic, patient and helpful or find another job. This is our Health that we're fighting for and these doctors/nurses/aids/whatever need to help us in the fight or get the heck out of the way....impeding our progress could be detrimental to their Health. Gerald, I am not yet on Dialysis, and I plan to go the PD route...after reading all of your posts I'm fairly sure that Dialysis Centers are not the place for me. I truly hope you find happiness and Sunshine in your new Center....and hurry up and get going on that Home Dialysis.
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Gerald ..... HA ! That's "buff" Einstein ........... I *do* think you're very smart ......... Einstein ?? Mmmmmmmmmmmm .........
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ummm, im liking what im reading, learning :)
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All the best to you on your journey, Gerald. Good luck at your new center!
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Hope all goes well at your new center today.
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In the yonder, there is life and surprises. Who would have guessed a result of research and the questioning of many people, including several Doctors, would lead to such a decision. Perhaps the surprise is why people like me want to live long and prosper, yes, we can’t wait to see what the next surprise will be.
Interviews revealed a general opinion that my old Nephrologist is the best in Northern California, that DaVita reuses dialyzers over and over again, and in that same Dialysis Center there is a patient with Hepatitis. This led to a very serious meeting with the Supervising Nurse at RIA where we reached an agreement on wholesale changes. With the discovery that my complaints are resolved, the notion of venturing into the unknowns of a new Dialysis Center seemed to be “not worth the risk”. What turned my head was the opinions of several personal friends (Doctors) and a technician who works in both places. Also, there are copious information about reusing dialyzers right here on “I Hate Dialysis”.
I am staying with RAI for now. (It seems they like me)
For those that listened, encouraged, and advised, my wholehearted thanks.
gerald
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A well-informed patient is usually a safer patient. You did your homework and then made a decision. That's the mantra you will hear over and over again here on IHD. Anyone with a chronic illness really must find as much GOOD information as they possibly can. It's not always easy to do that, especially if you are not feeling well, but it is necessary for survival.
When you feel like it, could you post more about what "wholesale changes" were discussed at RAI?
Sometimes we start off on the wrong foot. Hit the reset button and start over. I hope the travails of the past will stay there...in the past.
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Changes - per brinksmanship:
1. All patients will be informed/consulted at hook-up time about length of time and the amount of water to be taken out. The patient can change the amount of water taken within limits.
2. Dialyzers will be used once.
3. The Social Worker must appear regularly among the patients.
4. A review of the training for home dialysis.
5. A partial return to the receptionist function. There will be a person there during heavy patient traffic time.
6. Already changed, patients will be given printouts of their blood work; panels on kidney function and diet.
7. I must apologize to the Tech who I verbally abused. Not to the Nurse.
8. The door to the “pit” will remain locked; no garbage can to hold it open as had been the practice.
9. Gerald gets his chair; same place everytime, away from window glare.
10. Coughing patients will be placed in a separate room (glassed in room).
11. There is a promise that staff attitudes toward patients will change for the better.
12. I may continue to tell jokes. (Respect all around).
13. We talked about corporate problems with RAI who is now owned by Gambro – who is selling out to (I forgot the name). Both corporations are accused of saving and reusing dialysis medicines, a practice prohibited by Medicare. They played dumb to that inquiry but they are on notice.
14. I complained about appointment times and a new system has been inaugurated that permits a 15 minutes prep before they call the patients in.
15. I told the Head Nurse (male) that I regret exploding but we all should not deny that I got their attention and that created an opportunity for improvement.
16. I evaluated some of the staff. I don’t know what the result will be.
Gerald
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Changes - per brinksmanship:
1. All patients will be informed/consulted at hook-up time about length of time and the amount of water to be taken out. The patient can change the amount of water taken within limits.
2. Dialyzers will be used once.
3. The Social Worker must appear regularly among the patients.
4. A review of the training for home dialysis.
5. A partial return to the receptionist function. There will be a person there during heavy patient traffic time.
6. Already changed, patients will be given printouts of their blood work; panels on kidney function and diet.
7. I must apologize to the Tech who I verbally abused. Not to the Nurse.
8. The door to the “pit” will remain locked; no garbage can to hold it open as had been the practice.
9. Gerald gets his chair; same place everytime, away from window glare.
10. Coughing patients will be placed in a separate room (glassed in room).
11. There is a promise that staff attitudes toward patients will change for the better.
12. I may continue to tell jokes. (Respect all around).
13. We talked about corporate problems with RAI who is now owned by Gambro – who is selling out to (I forgot the name). Both corporations are accused of saving and reusing dialysis medicines, a practice prohibited by Medicare. They played dumb to that inquiry but they are on notice.
14. I complained about appointment times and a new system has been inaugurated that permits a 15 minutes prep before they call the patients in.
15. I told the Head Nurse (male) that I regret exploding but we all should not deny that I got their attention and that created an opportunity for improvement.
16. I evaluated some of the staff. I don’t know what the result will be.
Gerald
I am VERY impressed, Gerald! These are ALL changes that will improve quality of treatment for everyone! Kudos for your work!
#1 reminds me of a personal situation. I teach a diabetic child and have been giving him shots since he was 5 years old. He is such a trooper! But EVERY time, before the shot, I tell him how many units of insulin he is getting and ask if he wants to do his own shot. When he is wearing shorts, he often opts to give himself the shot. When he is wearing long pants he almost always opts for me to do it.
The point is that every bit of autonomy that the patient has improves self-esteem and can eliminate potential problems (more than one person checking the process).
This list of changes will most certainly have a positive impact on the other patients in terms of safety (especially #5,6 7 8), and quality of treatment (#1, 2, 3, 10 & 11). Plus, YOUR happiness and well-being are bound to improve (#12!!! & 9).
I'm impressed! Yes indeed!
Now, when would you like to come take over my business? It runs well, but with your track record, I think you could find some ways to make it even better!
:2thumbsup;
Aleta
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Saw Ongologist today, a great guy. (Should be after four cancers). Current cancer is nearly invisible. Will have to go for another cycle of chemo in March (four weeks). Talked to the nurses in the chemo pit, damned if they don't remember me. What is it about me that makes people remember me. I am normal . . . . . sometimes.
gl
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Congratulations,Gerald! You did good work today and that empowers all of us. :clap;
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Saw Ongologist today, a great guy. (Should be after four cancers). Current cancer is nearly invisible. Will have to go for another cycle of chemo in March (four weeks). Talked to the nurses in the chemo pit, damned if they don't remember me. What is it about me that makes people remember me. I am normal . . . . . sometimes.
gl
Great News about the cancer ! :bandance; I'm glad they are working with you at your current center. Stay alert, if things start slipping, you can "opt out" of reuse at DaVita - its a form you can request, and they willl use a new dialyzier on you everytime. We did the "opt out" at Davita, as I saw to many slip up's out on the floor, and was worried about a slip up in cleaning for reuse. We FINALLY got to start NxStage training last Monday (after a 9 month waiting list) and my hubby is feeling a lot better - I hope you get an opportunity to do daily hemo, the difference is staggering .
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All I was doing was sitting there talking with my beautiful blond wife, when terror entered the room. I was wearing a t-shirt and sweatpants, petting the dog, Auggie. Well, Auggie somehow got this notion, this dangerous thought – he spotted the two dingle-dangles (chest catheter) and determined they were playthings. He chomped on them and began to tug. Visions of a slasher movie entered my head. He didn’t want to let go, but I forced his little jaws open and I barked loudly at him. He went and sat with my wife. Then he bit her in the tit. She reacted similarly – as she was wearing no bra but did have on a t-shirt. By now I was truly worried. Those boobs are important.
We got the situation under control. Our reactions definitely influenced Auggie.
Gerald
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Ahhhh, Gerald you make me laugh out loud sometimes. Who knew Auggie was the 'devil dog'. Time to get him a chew toy !!
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:rofl; :clap; :yahoo; :bandance; :clap; :clap; :clap; :rofl; :rofl; :rofl; :boxing; :boxing; :Kit n Stik; :Kit n Stik; :bandance; :bandance; :yahoo; :yahoo; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl;
:bow; Gerald, you da man! :bow;
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ohhhhhh my goodness,, what a lovely doggie Auggie you have.... Sounds like he wanted to make sure ya had some 'bark' left in ya and im thinkin a squeek from the wife... (ps..no worries bout the boobies... they heal well, i've been bit a few times myself :o ;) )
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You barked at him?
:rofl; :rofl; :rofl;
Right on! Dogs do need to know who is the alpha animal! I think you talk Auggie's language and I'm SURE he got the message!
:clap; :clap;
Aleta
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Arf
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Arf
:rofl; :2thumbsup; :rofl; :2thumbsup;
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As I search for a comfy place to curl up and rest, I decided to change dialysis schedule. No more mornings and no more Tuesday, Thursday, Saturday. We are now a part of the afternoon crowd on Monday, Wednesday, and Friday. Except there wasn’t a crowd. It was half full when we arrived, and just two of us patients when we left for home. Perhaps I had bad breath.
In any case, I felt somewhat better. I can now sleep in late, linger over coffee, and I can chase Joanie all over the house before I have to experience the depressive exercise of dialysis. And the Dietician was on duty. She told me I wasn’t getting enough iron, last week. They gave me a supplement. I took it a squinted eye. Since then we’ve had hamburger every day. Joanie is complaining. I’ll go lick her on the neck, that always changes her mind.
Went to the county dump today. This is the first time I have driven a vehicle since last November. Didn’t wreck anything. Terrified a few people. Auggie went with me. He had never seen a seagull before. There were thousands of them today, all aiming at the bright red truck we were in. Auggie ducked and gave it a tiny little bark. I recited the “go to the dump” prayer: “Little birdie in the sky, who put whitewash in my eye, don’t you worry, I won’t cry, I only glad that cows don’t fly.”
The windshield washer worked.
Gerald
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:)
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Truth is, I feel a lot better since I questioned the water outtake. I almost feel like doing something, like, I feel guilty about being lazy. Or am I lazy?
Wife is having a hen party, or, call it a penis envy group, and that is why I have time on my hands today. I don’t participate because they are making a quilt. She needs a break from me and my needs. God bless that white skinned lady. (Her heritage is Danish – like a sweet thing for breakfast). Blonde, tall and all of the rest. She was my Secretary when I was Student Body Prez back in college. 37 years ago. Has it been that long?
Majored in Organizational Behavior (Small Group Dynamics). Yep, one of those “people manipulators”. I’m chuckling! For you insiders, it was fun to use it once again.
Auggie has been misbehaving lately, chasing the cats and crying bloody murder when the stand their ground. What the heck, I think I’ll take the little rascal out for a walk.
gerald
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I came here to this thread because another one made me feel all icky.....
I don't know, all that verse and chapter just made me feel like I needed a shower. :rofl;
Yep....I feel better already.
Sounds like you are doing much better since you got that fluid removal under control. :2thumbsup;
:waving;
Aleta
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You feel "icky"?
Let me clean you off. Stand still while I squirt you with a hose. (Squirt, squirt, wash, wash).
There now! All better.
What thread made you all icky?
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I'm a Racist.
There is a particular doc who makes me feel kind of slimy.
Thanks for the hosing off. :2thumbsup;
:clap;
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Am here to help.
Next time we'll run you through the car wash.
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Willowtreewren, I'm glad that I'm not alone in my opinion!
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Honestly I opened that thread once and it was enough. I totally skip all of the political threads now. There's plenty to read here and often enough I already have a headache !!!
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Am here to help.
Next time we'll run you through the car wash.
:rofl; :rofl; :rofl; It's a deal!
Amanda, I figured out a long time ago, there is no "reasoning" with that other fellow. The ranting puts me in mind of a crazed person whose voice is quavering with passion....
Just a bit creepy....
Ugh....I think I need that car wash. :rofl; :rofl; :rofl;
Aleta
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There will be NO personal attacks of members.
Sluff has already posted a warning.
The next step will be a temporary ban.
okarol/admin
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Yes Dear!
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I'm sorry, Karol. :embarassed:
It's not usually my style.
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Dialysis today. I saw the Doctor there while he was making his rounds. He wanted to know all about my “not ready for prime time” fistula. He looks at it, gropes a little then puts his listener thingy on the vein. He tells me there is a clot. I have to see the Vascular Surgeon tomorrow.
This fistula business is a pain in the butt. Well, in my arm, actually. Do I really want this thing?
gerald
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There I was, in a half empty dialysis center reading my book and minding my own business, when an ambulance drove up. After some hustle and bustle they wheeling this Japanese man in wheelchair. I would guess he was about sixty. He didn’t speak English very well, but I could tell that he was suffering severely from something that wrecked his stomach, huge headache and some distress in his lower legs.
The Doctor broke off our conversation to talk with the gentleman (seated in the next chair) and nobody was communicating. I knew a few words of Japanese. It wasn’t easy. I haven’t heard this stuff for over 50 years.
Long story shortened: he went to a Super Bowl party and had a few drinks. He said it wasn’t very many but I suspect he emptied the bar. He also has diabetes. He claimed all he ate was chips and guacamole. I tried to find out which team he wanted to win but I didn’t get him to understand. I never found out. As the session progressed I heard they were taking out 5.8 kilos of water. Perhaps he was holding all of that Super Bowl water. The Doctor gave him some kind of pill. The poor guy was really suffering, but he fell asleep. I think it was the pill.
That’s a lot of water, I hope they know what they are doing? Coming by ambulance meant he was checked into the hospital. Perhaps that party is still in progress. I wonder?
gl
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This fistula business is a pain in the butt. Well, in my arm, actually. Do I really want this thing?
Yes, you really want it as long as it works. Getting it to work seems to be a bit of a problem for you, though. I take it you are still using a catheter? Sorry, I can't remember the particulars. I'll be interested to hear what the vascular surgeon has to say about how he's going to fix it.
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Hmmm....guacamole/avocados have an awful lot of potassium. High potassium plus fluid overload...I hope he enjoyed the game. Big price to pay to see the manslut get beat.
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You put a smile on my face.
Not gonna rub gucamole on my fistula. Had surgery to put in the fistula followed by two angioplasties. Tomorrow I will probably schedule another one. Been about three months. It quit buzzing and returned to a pulse.
gerald
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You put a smile on my face.
Not gonna rub gucamole on my fistula. Had surgery to put in the fistula followed by two angioplasties. Tomorrow I will probably schedule another one. Been about three months. It quit buzzing and returned to a pulse.
gerald
Oh, Gerald. That doesn't sound good. I hope that they can do the rotor rooter thingy and get it working again.
:cuddle;
Aleta
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The Vascular Doc said it wasn’t a clot. After two angioplasties, he said this fistula is not working. So, we have scheduled another fistula surgery for next Monday. The first fistula surgery was on the left side of the wrist, the second one will be two-thirds of the way up the forearm. I had to do some dialysis rescheduling. That makes next week rather busy.
gl
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dang it gl :(
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I'm sorry to hear this, Gerald. It sounds like your new fistula will be where mine is...2/3rds up the forearm. Even though I've not had to use it yet, it has been buzzing along now for almost two years, so I am hoping yours will be the same. I don't know why, but I've gotten the impression that there is a higher success rate with fistulas place further up the arm. Anyone know...is that true? Or am I delusional? I wonder if perhaps that is true more for women than for men as we have smaller veins in the first place, and those higher up the arm tend to be larger. Anyone?
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I don't know what the actual stats are, but my vascular surgeon went for the wrist first, then right above the elbow. All in one surgery. So I woke up with four, count 'em, four scars. I was like WTH??? He told me when I saw him in his office that my wrist was iffy. Okay, so then why did you try it? What a dip. Now I have a useless scar on my wrist. Thanks, doc. :Kit n Stik;
I'm sorry to hear this, Gerald. It sounds like your new fistula will be where mine is...2/3rds up the forearm. Even though I've not had to use it yet, it has been buzzing along now for almost two years, so I am hoping yours will be the same. I don't know why, but I've gotten the impression that there is a higher success rate with fistulas place further up the arm. Anyone know...is that true? Or am I delusional? I wonder if perhaps that is true more for women than for men as we have smaller veins in the first place, and those higher up the arm tend to be larger. Anyone?
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cattlekid, that's a terrible story!!
My mother's access was in her upper arm, so I figured there was a good chance mine would be, too. The scar and the amasotosisasmatosostis thingy in just below the crook of my elbow, but I'm given to understand that the actually access will be in my upper arm. My surgeon never considered my wrist area.
Did your vs do a veinmapping? What did he do..just sorta wing it? Geez!
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Like I said, he's a dip. The access center did a vein mapping, which they sent to him. He then did an ultrasound in his office. Both times, the results came back iffy for my wrist. I will be so happy if I never have to see him again. Surgeons are generally arrogant jerks (apologies to anyone who is related to a surgeon - but I used to work in a hospital and I saw it first hand every day) and this guy just reinforced my opinion.
cattlekid, that's a terrible story!!
My mother's access was in her upper arm, so I figured there was a good chance mine would be, too. The scar and the amasotosisasmatosostis thingy in just below the crook of my elbow, but I'm given to understand that the actually access will be in my upper arm. My surgeon never considered my wrist area.
Did your vs do a veinmapping? What did he do..just sorta wing it? Geez!
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Surgeons are generally arrogant jerks
I think you may be right. Mine seemed nice, but he had a very strong Korean accent despite having been here for 30 years, and I could barely understand him, so maybe he was jerkier than I realized. I had read several posts on IHD about having to go in for a second op where the vein had to be "lifted", so I was really glad when he told me that he did this already when he created my fistula. I was grateful for his competence.
But some months after surgery, my arm started to really hurt in a way that I had not experienced before. Since I had never had a fistula, I had no way of knowing if something was wrong. I had images of clots or something, you know? So I called his office on a Friday and got an appt for Monday. His office staff was really nice and accomodating. So I go and get my fistula checked, and of course it was OK, and the surgeon looked at me like I was crazy and tut tutted about me wasting his time (although he didn't put it quite that brazenly). Jerk. But, as long as the damn thing works once I need it to work, I don't care...he can be as jerky as he likes, even in Korean!
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Gerald,
I am so very sorry. Do you have the option of a different surgeon if you aren't happy with your current one?
Maybe you could ask your other doctors who they would recommend. That is how Carl found his current dermatologist. Just a thought.
I hope you can get a really good "thrill" going and keep it thrilling.
:grouphug;
Aleta
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I don't know about the stats of where a fistula is better placed. Hubby's is on his wrist and has been serving him exceptionally well since 2000!! Hopefully it will keep working for a long time yet!!
Sorry you have to have another fistula Gerald. Hopefully this one will work.
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A good surgeon should defer to vein mapping over visual exam. to determine best placement for a fistula. I saw five vascular sugeons in total. I didn't even see the first one look at the vein mapping but he glanced at my wrists, asked me which was my dominant hand, then told me that he was going to do it in that wrist. I don't remember him looking at me diectly once. He went 'bye-bye.'. Then the next one did vein mapping (more money wasted, as they wouldn't use other doctors ones). He then asked me if I knew that fistulas last on average, only two years. Know I know that this is bunkum, so I thought "well, maybe yours have a bad track record for lasting, so he went 'bye-bye' too. The next one looked at the vein mapping but then every time I saw him, started ultrasounding it himself. Not sure that he knew how to use it properly because all I could see whenever he did it were little branching veins. Shame that I hadn't waved 'bye-bye'. to him because he made a fistula in my right wrist that immediatly failed. When I went back and he eyed up my other wrist, I thought 'no way.'. Should have trusted my gut instinct on him too. After that I tavelled to California to see some docs. Suggested to me by the nephrologist that I used to see when I lived in that State. Both seemed good, both said that the veins in my wrists were too small. i picked the one whose wife wasn't imminentlygoing to have a baby as I thought that he may a bit pre-occupied and sleep-drived. The one who did it mentioned that it may need to be a two- stage surgery, but it sounded like a 'maybe' rather than a dead-cert. discharged me without any follow-up instructions. I had to e-mail him about three times to get any.
I also wrote to a doc. in Texas whose paperI had read on-line with a view to going to him if needs be since no-one seemed to be recommending anyone worthwhile. He put me in touch with an atlanta nephrologist, who recommended a vacular surgeon to me. I went to see him and he told me that they would need to transpose the vein because it was too deep. Told me that I would have a four to five inch incision. Wake up to find that it's from my elbow all the way up to my armpit. Now I may not be the most propotionally-built human being but I don't have four or five inch length upper arms! Added to that, the incision was right on the far inside of my arm, and the fistula was right under the incision even though from my first consultation with him, I had empahsised that I intended cannulating myself, and looking at the position of the fistula, I despaired that I would ever be able to self-cannulate. Well, the nice incision line healed up and the scar broadened out and broadened out as it hypertrophied. My dialysis nurse agreed that it would be virtually impossible to cannulate even by someone else and he accompanied me to the doctor's office to tell him th'is. So off I go to the operating theatre again, and he moved it across to where I told him I wanted it, which is down the middle of my bicep.
It then took an inordinant length of time to mature sufficiently that it could be used, and even then was still pretty skinny, only really growing once they started to use it.
I would like to point out that sometimes the op to make the fistula and the procedure to lift the vein are done separately to allow the vein time to grow a bit before they lift it, particularly if the vein is small, since it is delicate and can be damaged during the transposition, more easily so, if it is small.
I am sorry for this huge post, but I am hoping that this will be a cautionary tale to say that it is important to be comfortable with the doctor. Your gut-feeling is often right, so trust it and leg it out of the door if you doubt the doctor's ability. Inform yourself beforehand and ask lots of questions. Stand firm on what you want. I got there eventually and have a good strong fistula now, but boy, did it take some work to get there?
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Amanda! You ROCK! :2thumbsup;
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Oh geez, what a story, a100w! Thanks for explaining why sometimes a fistula is created and then lifted in a second op; that makes sense.
I went to the vs recommended by my neph, and I asked if he trusted him to do a good job. He said yes but that I'd probably have trouble understanding him, which turned out to be true. When I had my first appt with the vs, I asked him about his experience, and he said that for decades he'd been creating at least 20 fistulas a month, so I figured that was pretty extensive experience.
My mom, however, spent 18 months using a catheter while they faffed about with her fistula. She ended up going to one of the top vs in the Texas Medical Center who got her fistula working beautifully.
It's hard to know who to trust, although sometimes it's easier to know who NOT to trust!
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Thanks for posting Amanda. This info is going to be helpful to me. Sorry you had to go through so much crap to get things done right. We really are our own best advocates. :boxing; Some of those Docs out there will kill ya if you don't watch it.
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That sounds crazy to me. I cramp like crazy when they take out more than 4.0. And I'm 186 lbs. That's a big strain on the heart muscle. That could set you up for conjestive heart failure. I take plenty of Standard Process "Cardio-Plus" to keep my ejection fraction up. Mine has been as low as 19, and it was 75 during my last check. 70 is considered normal. The lower, the weaker you are. Have you been watching your fluid intake? That must have been a horrible experience. I wish I had the home dialysis. I would love to just do an hour of "D" a night instead of sitting in the chair for 4 hours, and then some, waiting for them to finish up.
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Dialysis day. Afternoon, about 12:30 PM. Wife drives me to town because she wants to do some shopping. I ask her to make a quilt, a big one with a dog-bone in the middle and doggie decorations where she thinks it looks good. Yesterday she visited a fabric store. The day before she visited a fabric store. The day before that she visited a fabric store. Hey, there is only so much money in the world and I reason that she can’t possibly spend it all. Can she?
Meanwhile I am planted in the dialysis chair, hooked up to a machine via two lines the size of a fish-tank tube. Fish don’t blink, so I blink to make certain that I am not a fish. The equipment looks like a juke box and it goes click - click - click. I find my foot waggling to the rhythmn of the dialysis machine. My od, I must be warped.
Wife is supposed to stop at the gym and negotiate my membership. I haven’t been in there since January 2011. I was hoping they would give me another year. With that I might start lifting again.
Wife goes to the gym. Sees a sign announcing massages. For $35 she goes in and has a massage. Takes about an hour. She comes out refreshed. Forgets to ask about my membership problems.
Meanwhile, my butt is getting tired. I do the shift to one cheek. That works for about ten minutes. Then I shift to the other cheek, another ten minutes. I’m out of cheeks. Two hours left. I am paralized from my ass to my knees.
Wife goes to a fabric store and sees a red fabric with little doggie bones on it. She doesn’t buy anything.
By now I slip, or slump, lower in the chair, pull the blanket up and pretend to be asleep. The Doctor sneaks up and loudly says, “Mr. Lively!”. This guy is the devil. He is grinning from ear to ear. “Doctor Fergie,” I say, wiping my eyes. I tell him I’ll be having my fourth surgery come Monday for this fistula business. He looks sympathetic. “Will it hurt?” I ask shyly. “Its going to hurt like nothing you’ve ever felt,” he explains. He is a BSer so I think I’m okay.
Then I hear a dialysis machine making odd noises. Most of the patients have left, just three of us remain. I hear something that sounds like hi-speed morse code. I’m picking up a character here and there but the sender is too fast. It goes on for a while, so I call a tech over and ask him what it was. At that very instant, it stopped. I told him what I heard, he looks at me like I bonkers. Never heard it after that. PDST? Tinnitus?
Wife comes in just as I got back to sleep. She tells me about her day and how relaxed she feels. I tell her about my day and how much my butt hurts. I ate two snacks and left a handful of grapes. Mr. Bill, the boss there, told me most dialysis centers prohibit food in the dialysis room. Maybe I will order a pizza next time.
They took out 2.5. Creatinine is 2.9. Everything else is good. Came home exhausted.
gerald
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A pleasant day at the office.
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This was sent to me from a truly good friend and veteran of the Intelligence Community in the Far East. For all of these years he has been my guiding light. Damn, we are getting old. I weep, I swear to whatever God there is for setting this up. Damn it to hell!!!!! I will never be the same again.
Gerald
.................................................
You are aware that I have been seriously ill of late; the truth is that I came within 48 hours of “buying the farm” due to acute kidney failure. In addition, prostate cancer has spread to the bone. Depending on how aggressively the cancer is treated, the doctors estimate 12-36 months of life expectancy remaining – which is perfectly acceptable, since I am coming close to one’s normal life expectancy anyway. Among other procedures, I will be undergoing procedures under general anesthetics as an in-patient on the operating table quarterly, probably for the rest of my life.
Our faith in the goodness of Almighty God sustains us in our times of need; we are indeed comforted by all of the blessings he provides us daily. The outpouring of prayers storming heaven have surely been answered.
Sylvia and I wish to express our deep gratitude to the Knights of Columbus and our neighbors who have been and continue to help us during our hour of need. Whatever Sylvia needed during my more than two weeks of treatment was provided for, whether it be transportation to/from the hospital and nursing home, taking her shopping, shopping for us. I am still weak, and confined to the house except for necessary trips to the medical clinics.
I am able to negotiate the house with the aid of an electric scooter, which was provided for Sylvia’s use last year without charge through the assistance of KC-Help, a bank of durable medical equipment based in Kennewick. It is my dream to have such a bank set up here in the Vancouver area, staffed by the Knights of Columbus. Together, we can accomplish much more in the name of Charity than we can as individuals.
My youngest son, Donald, is preparing to move to Vancouver to live with us to help us with the tasks and chores that I can no longer do for us. We are very grateful for his support; indeed, all three of our sons are being very supportive of us to the extent that they are able, not living here in the immediate vicinity. We are fortunate to have three loving and caring sons.
Thank you for all of your best wishes and your concerns. Especially keep the prayers going. God always answers prayer, just not always as we would have it. Remember – the emphasis should always be “Thy will be done!”
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:grouphug; Gerald.
I think the thing that sucks the most about getting older (besides the onslaught of one's own infirmities) is the loss of our friends. It leaves such a hole in our lives.
:grouphug;
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Sorry to hear you friend is having such a tough time. It sounds like he's made his peace with God and is OK. God Bless you Gerald. God has touched your friend and eased his pain. He praises God even though he faces death. He is in good hands!
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Yes, it is one of the worst parts of getting older, seeing your friends pass. My wife's ex-husband's mother, a dear friend, is in the IC ward, with pneumonia and a heart attack. It's not so hard on me, but my wife and my son are definitely feeling it.
I see my vascular surgeon next week. My fistula is working, but only with the arterial vein. I guess it takes time for the system to adapt to the stress of dialysis. I walked 30 minutes at 2.8 mph three times yesterday, and it felt really good. I listen to the doors or the stones or led zeppelin to make the time pass on the treadmill.
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Gl,,, this touches my very soull... It hurts and what can we do about it but take it. Well, and pray for peace with it. I survive by prayer, but it's still hard. It's hard for me to watch Bo loose friends. They are so dear to him and destroys another part of him each one he looses. This is my hardest part of life is watching others suffer these losses.. Im sorry Gerald and I wish you the same peace that your friend expresses..
Wish i could change this sorrow for you
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Gerald .... if it brings you any comfort, your friend is so very lucky to have you as his friend. Just as we are all so lucky here that you joined this board. You make a difference for him and for us. Thanks for all you do. My thooughts are with you and your friend.
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'And like the old soldier in that ballad, I now close my military career and just fade away, an old soldier who tried to do his duty as God gave him the sight to see that duty.'
Douglas MacArthur
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I am touched by your love for and your tribute to your friend and also admire his courage and attitude...still thinking about others even as he is so obviously struggling.
:grouphug;
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A Prayer for Duane:
Go placidly amidst the noise and haste, and remember . . . nurture strength of spirit to shield you in sudden misfortune. . . . be at peace with God, whatever you conceive Him to be, and . . . . in the noisy confusion of life keep peace with your soul.
I don't know what else I can say.
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:grouphug; Its so sad to have to say good bye to loved ones no matter how old they are. He is very lucky to have you as a friend.
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There remains a tight-knit group of us who participated in the pre-Vietnam/early Vietnam intelligence gathering under the authority of the NSA. Some of us were lent to the CIA for short periods of time. Those who stood out are remembered by us all. About 1965 the Army took over and ruined the whole show.
There is a motto belonging to this unit: No promotion, no pay, no recognition.
We were good at what we did and we soon discovered that those who do not understand what and how we did this work, could not supervise that work. When one of us passes on, we know that an important piece of history, the lives we saved and the heroism within that unit, will also die. Yes, it all remains classified.
I’ll try to end the Duane story here. I need not cathart all over this forum.
gerald
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This is important ftuff - memorize it:
1. Where there's a will, I want to be in it.
2. The last thing I want to do is hurt you. But it's still on my list.
3. Since light travels faster than sound, some people appear bright until you hear them speak.
4. If I agreed with you, we'd both be wrong.
5. We never really grow up, we only learn how to act in public.
6. War does not determine who is right - only who is left.
7. Knowledge is knowing a tomato is a fruit. Wisdom is not putting it in a fruit salad.
8. They begin the evening news with 'Good Evening,' then proceed to tell you why it isn't.
9. To steal ideas from one person is plagiarism. To steal from many is research.
10. Buses stop in bus stations. Trains stop in train stations. On my desk is a work station.
11. I thought I wanted a career. Turns out I just wanted paychecks.
12. In filling out an application, where it says, 'In case of emergency, notify:' I put 'DOCTOR.'
13. I didn't say it was your fault, I said I was blaming you.
14. Women will never be equal to men until they can walk down the street with a bald head and a beer gut, and still think they are sexy.
15. Behind every successful man is his woman. Behind the fall of a successful man is usually another woman.
16. A clear conscience is the sign of a fuzzy memory.
17. You do not need a parachute to skydive. You only need a parachute to skydive twice.
18. Money can't buy happiness, but it sure makes misery easier to live with.
19. There's a fine line between cuddling and holding someone down so they can't get away.
20. I used to be indecisive. Now I'm not so sure.
21. You're never too old to learn something stupid.
22. To be sure of hitting the target, shoot first and call whatever you hit the target.
23. Nostalgia isn't what it used to be.
24. Change is inevitable, except from a vending machine.
25. Going to church doesn't make you a Christian any more than standing in a garage makes you a car.
26. Where there's a will, there are relatives.
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27. It is better to be thought stupid than open your mouth and remove all doubt! :rofl; :rofl;
(I practiced that one all the way through high school. Now, I rarely leave folks in doubt!)
:cuddle;
Aleta
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I love these.
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Fistula surgery #4 tomorrow. This one is a new fistula. the other one didn't work.
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Me too! And I intend to pinch 'em!
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Fistula surgery #4 tomorrow. This one is a new fistula. the other one didn't work.
GOOD LUCK ! ! Will the new one be in the same arm ? Sure hope this one is a success - my hubbys first fistula failed, it was in his right arm, the 2nd surgery worked - in his left arm, and now he can cannulate with his right, so that worked out well for us in the long run . Hang in there :cuddle;
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Same arm, left one. It seems the first one never got going. It seems I have a bottleneck that survived two angioplasties. This one will be about three or four inches down from the inside of my elbow, right there in the tender spot. My right arm has seen chemotherapy and those veins are suspect. Besides, I couldn’t stab needles with my left arm anyway. Yucky-pooh.
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Good luck Gerard.
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Thinking about you. I hope you get a good thrill from this one! :2thumbsup;
Aleta
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I see the dog is back. What happened to the picture of you?
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That is me with my new teeth.
Change is good, unless you think I should put up a picture of myself.
An idea, vote for which avatar I should use!
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I liked the one with the beard and sunglasses....and the one without the beard and sunglasses.....and the smiling dog! LOL
I can't decide! :rofl; :rofl; :rofl;
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Inspirational Story of a weight lifter DONT MISS
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source: http://www.chicoer.com/localsports/ci_3404453
Lively still living life to its fullest
By SCOTT WILSON-Sports Writer
Gerald Lively wants to boldly go where no man has gone before.
Well, at least he wants to go where no powerlifter has ever gone before. And considering all the obstacles he's overcome in his life thus far, it's not out of his reach.
While most people his age are working on sailing off into the sunset, the 67-year-old is living the life of someone half his age.
"My goal is to lift for three more years," he said. "I'll be 70. There aren't any records for a 70-year-old. All I have to do is get there, make some lifts and I'll have the records."
One distinction you won't find Lively flaunting, or showing any ill effects from, is his three bouts with cancer. In all three cases, you could say Lively won by KO.
His story is one of perseverance and courage in overcoming the debilitating effects of cancer, chemotherapy, radiation treatments and surgery.
"Those were interesting in and of themselves," Lively said.
Lively was a deputy county administrative officer in Chico before he moved to the frontiers of Alaska, where he was a city manager of Yakutat from 1989-1990. He left because "he didn't feel right."
He was later diagnosed with cancer, specifically Hodgkin's lymphoma, or Hodgkin's disease, in the winter of 1990.
Hodgkin's disease is a form of cancer that starts in lymphatic tissue. Lymphatic tissue includes the lymph nodes and related organs that are part of the body's immune and blood-forming systems.
Lively underwent surgery to have lymph nodes removed to determine if they were cancerous. After his prognosis he had chemotherapy for seven months. It took a toll on him physically.
"Imagine the worst hangover you have ever had," he said, "and have it last for seven months. It was miserable."
Lively said he had to have a blood test every two weeks to ensure his body was cancer free, and for three years it remained that way. In the summer of 1993 doctors diagnosed him with prostate cancer. He had surgery in August of that year to remove the afflicted area.
He also had emergency gallbladder surgery in 1994, which Lively said was, "the most intense pain I've ever felt." In 2000 cancer had struck again in his prostate, but instead of surgery he underwent 36 radiation treatments.
"Surgery is relatively quick," Lively said. "Radiation runs you down. They waited a while before they would let me exercise.
"I was in really terrible shape. I wasn't chomping at the bit, but my doctor said I had to get into an exercise program."
Lively took those words to heart, and began what has turned into one of his passions.
After working out at home, he joined Fit One in Chico and hired a trainer, Hillary Arthur, who is now the head coach of the Western Nevada Community College women's soccer team.
He had an auspicious start to his new weight-lifting regimen. He injured his ankle the day before his first day of working out, and he showed up on crutches.
"Someone coming in on crutches, you don't usually see that at a fitness facility," Arthur said. "He was so dedicated. He was determined and he was (angry), and because of those two, he was motivated.
"I consider him a great man. He's a fighter and an inspiration. He is very fiery, and that's what makes him Gerald."
Lively has also followed the direction of his first cousin and chief of police at Chico State University, Leslie Deniz. Deniz has the credentials to share information about powerlifting.
She was named the strongest woman in the world in 1981, she won a silver medal in the discus at the 1984 Olympics in Los Angeles and she had a long career spent in the weight room.
Their first meeting was more of a chance encounter than a planned training session.
"We ended up at the same gym," she said. "It was like, 'oh my gosh' and that's how we started working out together. It was nice to have a family member to work out with."
Deniz said she knew that Lively was having some health issues, and it was very nice to see him at the gym.
"It was also very inspirational to see somebody move on and still be in such high spirits," Deniz said. "He's very self motivated. I'm very proud of him."
After putting in enough training to be prepared for competition, Lively entered his first contest in February of 2004.
Lively owns three national and four state records for the American Powerlifting Association in the 65-69 age group, 242-pound class. He also owns a pair of state records in the 275-pound weight class for his age group.
He has the top squat (360 pounds), deadlift (300) and total combined for all three events (910) at the national level. He also has the top bench in the state (250). Lively is humble about his exploits despite his success.
"There are some guys my age who can out-lift me," Lively said, "but they're just not at the tournaments."
Competitive powerlifting combines the bench press, squat and deadlift. Each movement must be done precisely, lowering the weight and returning it through the designated range of motion. A referee decides if each lift meets the appropriate criteria.
"I went to my first tournament, got a few trophies and I was inspired," he said. "I was thrilled by the competition. Powerlifting is a full-body conditioning regimen. These guys that do full power are something to see. It's really inspirational to see."
In his second year of competition Lively competed in four tournaments total, all in Sacramento, sanctioned by the APA. He competed in local tournaments and won all three lifts.
All of this led to his record-setting tournament on Nov. 19. Lively also had some disappointment at the event. While attempting a new world squat record for his age group, his completed lift was disallowed by a referee's decision.
"I missed it by one-quarter of an inch, according to the referee," Lively said. "'Another quarter inch,' he said and I would have had it. Next time I go to a tournament there will be no doubt about my depth."
Lively isn't just a jock, he's also written an unpublished science fiction book and he has a Web site (www.livelyroots.com) that covers genealogy.
"I do lots of different things," he said. "I built half of the house I live in."
__________________
23 M (when diagnosed)
Diagnosed 5/1/05 NSHD 2A/B Ex
Chemo: 6 Cycles ABVD Radiation: 36Gy IFRT
jaggu
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#2 01-16-2006, 09:42 AM
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:2thumbsup; :2thumbsup; :2thumbsup;
You ARE an inspiration! :2thumbsup;
:cuddle;
Aleta
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You truly are an inspiration!!! :beer1;
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Surgery today. Didn't go smoothly. Had surgery, Doc didn't like the results, went back in for second surgery.
gerald
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I'm sorry your surgery did not go well, I hope you're sleeping comfortably tonight.
nice article- good for you and I hope you set some age 70 records. :)
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Hope the second surgery was a success. Pretty fit for an old coot!
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It is one of those days when you can hear the wind. This wind is a cold north wind, coming down the Feather River Canyon for 70 miles before it tops the ridge and hits us with its penetrating chill. The African Daisies died back, shielding themselves behind the hardy Rockrose, a sure sign that winter has not finished with us, as brief as this winter was.
There are six, count them, indications that the neighbor’s dog is healthy. I haven’t cleaned it up yet, too cold.
Joanie went to get the mail at our rural post office. It’s inside a hardware store. No doubt the bulk of the mail are catalogues. As a kid we used these in the outhouse. It comes on rolls now. What has the world come too?
One o’clock in the afternoon and I’m still in pajamas. Hey, it’s the day after dialysis. Joanie took Auggie with her. She is probably regretting that about now. Yep, he is one of those critters that has to sit in the driver’s lap. Although he doesn’t bark much, he is a licker. I have cleaned my glasses a thousand time a week, I know these things.
Earlier I took Auggie out for a walk, about 200 yards up the road over by the neighbors. Yep, Auggie returned the favor and dumped on their property. Okay, so all of this is no big deal, it’s just my day off. This is life worth living – in my pajamas.
gerald
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Gerald,
Sorry to read about the grief and crap you're experiencing.
If I understand correctly, you were told home hemo with a catheter was "out" for you (while waiting for fistula to become useable)?? That is total BS. I did that very thing.
---Dan
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Each clinic has their own empire of bureaucracy. :thumbdown;
This life is very much worth living. And especially in pajamas. Or even in less! :shy;
Carl will be home tomorrow. (He's on a camping trip with some of my students - they needed a man with them and I didn't fit that description!) Didn't sleep well last night, but so tired tonight, I'm sure the zzz's will come. Too much going on in my mind to shut the damn thing down last night. Hadn't had one of those wide-eyed nights in a long time. Maybe it's time to pull out the C-PAP again. I thought I was shut of it. Maybe not.
Lucky you HAVE that catheter, :cuddle;
and Auggie. I like a little licker....only spelled with a "q" :rofl; :rofl;
Aleta
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Well, heck - - Here is the news:
This whole contraception debate is just so new-fangled, says billionaire investor and mega-funder to the super PAC supporting former Senator Rick Santorum (R-PA) for President, Foster Friess.
In a simpler time, there were other ways to deal with female sexual desire. “Back in my day, they used Bayer Aspirin for contraceptives. The gals put it between their knees and it wasn’t that costly,” he said Thursday on MSNBC’s Andrea Mitchell Reports, setting the host back for moment.
The general conversation was about Santorum’s past statements about contraception, who once s aid that it was “harmful to women.”
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And all this time I was using Bufferin. No wonder I have all these grandkids.
gerald
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:rofl; :rofl; :rofl;
"deal with female sexual desire" :rofl; :rofl;
They don't know how to deal with it? Maybe they need some lessons! :bow;
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In two weeks I start another cycle of chemotherapy. This in addition to dialysis sessions.
If you were to walk into the “Infusion” center, you might think it was a dialysis center. They use the same chairs and the patients sit for three to four hours. The difference is the atmosphere; the Infusion Center is in an indoor garden setting, (big windows and lotsa greenery) they serve any kind of fruit juice and they have dessert goodies for the patients. I have contributed a carrot cake and other sweet snacks for those patents. Almost all of them have a cancer condition worse than my problem. And I entertain. I have been known to walk in there with the “thought for the day” pinned to my shirt. I’ll waltz around the room for all to see.
The nurses are the best and I usually get a hug when I show up.
I tried to get the Supervising Dialysis Nurse to come over to the Infusion Center to show him that Diapysis Centers do not have to be so grim in appearance. No cigar, he wouldn’t go there. Instead they bought a boom-box to play a little music. The Infusion Center brings in music talent from the University to play, usually soft acoustical guitar.
The bad news is they will have to stab my right arm since my left arm is occupied with this fistula business.
One month beginning in March, then nothing for six months. After that we get to do it again.
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:flower;
I take a friend to get her infusions (5 days out of 21). I sure wish her center were as nice as yours sounds. :cuddle;
There are a group of us who rotate driving her. Another round starts Monday. She is tired of it. And she worries that we are tired of driving her. Au contraire. I don't think I'm the only one who enjoys the time spent with her. Friends help friends who need the help.
Hang in there, Gerald.
Aleta
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I had that double surgery last Monday for the fistula. My forearm is growing, I’ll look like a one-armed Popeye if it continues to grow at this rate. Is this what I am supposed to anticipate?
No, I haven’t seen the doctor since the surgery.
And yes, it smarts a bit.
gerald
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Swelling? Doesn't sound too good. >:(
I don't recall Carl's arm swelling after his surgery, but it was only ONE, not two. When do you go back to see the surgeon? I hope it is not too far out in the future.
You have quite a bit on your plate. And it doesn't sound too appetizing. :P
Aleta
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Gerald, Hubby always tried to "lighten" the atmosphere in the dialysis unit with his jokes, comments and stories. He always said he felt good if he made one person laugh for a few minutes and forget about their other problems. One day there was a patient visiting and a member of his family was with him. They did not appreciate the jokes and wrote a letter to the management complaining that it was a clown show not dialysis!! The management brought it to the nurses attention but the management and the nurses basically ignored the complaint. No body else ever complained. Hubby still gets hugs whenever he visits the unit. Sad thing is all of the other patients that did dialysis at the same time he did - Tues, Thurs, Sat mornings have all passed away. The last one died a couple of weeks ago.
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del said, "He always said he felt good if he made one person laugh for a few minutes and forget about their other problems."
Amen!
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I have often said that I cannot believe the difference between the way cancer patients are treated vs. dialysis patients. I truly believe that this is because dialysis is most often given in a for-profit setting, whereas cancer centers are most often attached to hospitals. I know that around here, hospital-attached cancer centers are springing up everywhere and competing to see how many patient and care partner amenities they can provide. When my mom was diagnosed with breast cancer, Susan G. Komen foundation gave her free access to massages, yoga classes and all sorts of other alternative therapies for which a dialysis patient can only dream of.
I had the opportunity last summer to visit a not-for-profit dialysis center. Fast Internet, TVs with more than just a handful of channels, a beautiful view, nice decor, pillows and blankets, and coffee, water and ice chips provided. Diabetics got juice and crackers as well. I came back home disgusted with my pit of a center and soon after that, I went to home dialysis.
I also think (and here's where I could be wrong) that dialysis centers suffer because most of us are on Medicare. They get paid a pittance for each of our treatments so there isn't a lot left to go around for amenities. But again, there's that for-profit motive that also gives them the motivation to skimp wherever possible.
In two weeks I start another cycle of chemotherapy. This in addition to dialysis sessions.
If you were to walk into the “Infusion” center, you might think it was a dialysis center. They use the same chairs and the patients sit for three to four hours. The difference is the atmosphere; the Infusion Center is in an indoor garden setting, (big windows and lotsa greenery) they serve any kind of fruit juice and they have dessert goodies for the patients. I have contributed a carrot cake and other sweet snacks for those patents. Almost all of them have a cancer condition worse than my problem. And I entertain. I have been known to walk in there with the “thought for the day” pinned to my shirt. I’ll waltz around the room for all to see.
The nurses are the best and I usually get a hug when I show up.
I tried to get the Supervising Dialysis Nurse to come over to the Infusion Center to show him that Diapysis Centers do not have to be so grim in appearance. No cigar, he wouldn’t go there. Instead they bought a boom-box to play a little music. The Infusion Center brings in music talent from the University to play, usually soft acoustical guitar.
The bad news is they will have to stab my right arm since my left arm is occupied with this fistula business.
One month beginning in March, then nothing for six months. After that we get to do it again.
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I don't know about the US but I do know that in the UK, that the 'little luxuries' in many cancer units are paid for by charities and individual fund-raising. Cancer is high prominence, kidney failure isn't. When we moved to the US, I had a pile of good clothing that I took to donate to a cancer-consignment store. They were not interested in taking it. I took it to a store collecting to raise money for mentally-disabled adults. They were very grateful for it. It also seems to me that the kidney charities are not so prominently advertised as the cancer charities.
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There is a lot of talk on the forum about death. This reminds me of the wives-tale about renal failure being fatal. Well Folks, I am not ready to retire from life and I will advise all to get the thought of death off your not-busy-enough minds. This sort of pre-occupation will subtract from the sum total of allotted life-days.
You are here to live life; not to contemplate the end of days.
Age does change us: I am too young to sit all day and watch reruns of “Murder She Wrote”, but I am too old to chase the ladies, ride the Harley and party all night. Jeez, I do miss those days, at least the chasing the ladies part. Catch a few, miss a few – what a game it was. Why, I remember this beauty who . . . . . . better not say. Delicious.
So what to do? Give a little. Yes, give! There are all sorts of people out there who are worse off than you or “we” are. Why not ease their discomfort? Tell a joke, make an ass out of yourself if it’ll get a laugh – because a laugh is the best medicine – so says Reader’s Digest of old. Get someone to laugh so hard they wet their pants. Or you wet yours.
Beachbum wants to end it all. Another thread talks about life expectancy on dialysis. All downers.
Hey, plant a tree for some person who isn’t born yet but might enjoy the shade of that tree someday. Pet a dog, feed a starving cat, ignore this contemporary ban on free speech called political correctness and tell someone how good they look today. Make ‘em smile. Ask them how you can help.
Death is a bummer; life is the way to go. Strive for self-actualization. Paint a picture, write an article or a book, tell your partner that the very sight of him/her makes you horny.
Quit hanging on to the handrails . . . Let go. Surrender. Go for the ride of your life. Do it every day.
There are only two ways to live your life. One is as though nothing is a miracle.
The other is as though everything is a miracle
You miss 100% of the shots you don't take.
Don't be afraid your life will end; be afraid that it will never begin.
One of the secrets of a happy life is continuous small treats.
Above all, try something.
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I like your way of thinking. Hubby usually says "what's the point of point of whining - nobody wants to hear it" It only makes you and the audience miserable. (Although I have had to give a few pep talks over the years)
We both realized a few years ago that we should live life to the fullest we can and appreciate every moment. :beer1;
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Quit hanging on to the handrails . . . Let go. Surrender. Go for the ride of your life. Do it every day.
:rofl; :rofl; :rofl;
With my arthritic knees and lack of 1/2 of my balance mechanism (lost my left middle ear many, many years ago), I'll stick with holding the hand-rails, thank you.
But otherwise... :2thumbsup; :thumbup; :2thumbsup; :thumbup; :clap; :clap; :clap;
Aleta (who plans on getting up to Newfoundland soon to meet Del and Walter)
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I can laugh as much as I want, find something funny, but wetting my pamts just isn't an option - I wish, because that would mean that I had some kidney function! :2thumbsup;
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Wetting his pants isn't an option for hubby either!! He hasn't peed for 11 years!!!
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NYT - Transplant News.
As it happened, Mr. Ruzzamenti experienced an unusual level of pain during his recuperation at Riverside. It sometimes left him balled up in agony, and the Demerol only made him hallucinate. He did not really want company. But when the pain stirred him awake at night, he could see Lucy sleeping in the hospital bed beside his.
Acts of Devotion
There were other love stories along the way.
Gregory Person and Zenovia Duke, both now 38, had been junior high prom dates in 1987 in Astoria, Queens. They lost touch and then reconnected on Facebook after each had divorced. They saw each other occasionally, but he lived in Queens and she near Albany, so the relationship never got serious.
Not long after they reconnected, Mr. Person’s half-sister died of kidney failure and he pledged to help someone else beat the disease if ever given the chance. Then Ms. Duke learned she needed a transplant.
On Aug. 31, Ms. Duke received a kidney from a woman in California and Mr. Person sent his to Ohio. As they recuperated at NewYork-Presbyterian , Mr. Person found himself regularly hobbling down to her room. Once they were both back on their feet, they started dating more regularly.
“I’ve never had any person in my life actually do what they say they’re going to do,” Ms. Duke said, “especially men. It spoke volumes that he was a man of his word.”
It was a different kind of devotion that led David Madosh, 47, to donate a kidney for Brooke Kitzman, 30. Their four-year relationship, which had produced a 2-year-old daughter, soured just as he was getting tested as a potential donor. The breakup, caused partly by the strains of her illness, was ugly enough that when Ms. Kitzman later matched to become part of the chain, she put the odds at no better than 50-50 that Mr. Madosh would still donate.
But Mr. Madosh, who lost his mother when he was 5, did not want his daughter, Elsie, to lose hers.
The youngest of 12 children, he said he had been passed from one foster home to the next, eight in all, some that he described as little more than labor camps. “I don’t want my daughter to have to experience that,” said Mr. Madosh, a tree cutter by trade. “No matter what it takes, a daughter needs her mother.”
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Ms. Kitzman said she was grateful for Mr. Madosh’s kidney, and had told him so when they visited in a hospital corridor. But both made it clear that his act of charity had barely eased the tension between them.
Mr. Madosh said he took satisfaction enough from seeing Elsie at play with her re-energized mother. “When her mama comes to get her, and she gives her hugs and kisses, that’s it right there,” he said.
A Wish Come True
On Dec. 19, Chain 124 hurtled toward its conclusion with a final flurry of procedures at Ronald Reagan U.C.L.A. Medical Center in Los Angeles. Between dawn and dusk, three kidneys were removed and three were transplanted in neighboring operating rooms. One flew in from San Francisco. The last took off for O’Hare.
At the end of the cluster were Keith Zimmerman, 53, a bearish, good-humored man with a billy-goat’s beard, and his older sister, Sherry Gluchowski, 59. She had recently moved from California to Texas but returned to donate her kidney.
The siblings had always been close, although family members marveled at their ability to bicker for 15 minutes over the proper way to construct a peanut butter sandwich. Their mother, Elsa Rickards, remembered teaching them as children “that they might not have their mommy and daddy all the time, but they will always have each other.”
Mr. Zimmerman, who runs a repossession firm with his wife in Santa Clarita, had been given a diagnosis of kidney disease 25 years ago. With the help of a nutritionist, he had managed to avoid dialysis until the very last day before his transplant, when his doctor said the procedure was needed to clear his body of excess fluid.
In his hospital room before surgery, with seven family members shoehorned into every nook, Mr. Zimmerman calmed his nerves by listening to Aaron Neville on his iPod. He said he considered himself “the lottery winner” in the chain because his kidney would be coming from a healthy 28-year-old, Conor Bidelspach of Bend, Ore.
The surgery to remove a kidney, known as a nephrectomy, is remarkably bloodless these days. With Mr. Bidelspach on the table, Dr. Peter G. Schulam cut four dime-sized incisions on the left side of the abdomen. Through tubes inserted in the openings, the surgeon and his team maneuvered their cauterizing scalpels and a laparoscopic camera, which relayed images of Mr. Bidelspach’s insides to monitors overhead.
The scalpel’s super-heated pincers clamped down like crab claws, searing the kidney from surrounding tissue. There was no need to cut any muscle.
Once the kidney was free of connective tissue, Dr. Schulam clamped and snipped the renal artery and vein and ureter. He captured the kidney in a plastic bag, cinched it shut, and withdrew it quickly through a finger-length incision along the pelvic line.
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The doctor poured the kidney into a bowl of ice and drained it of remaining blood. The slush in the blue bowl turned fruit-punch pink.
As others stitched up Mr. Bidelspach, Dr. Schulam wheeled the kidney on a cart into an adjoining operating room, where Mr. Zimmerman was already anesthetized. After stretching a hole in Mr. Zimmerman’s midsection with a metal retractor, Dr. Jeffrey L. Veale lowered the kidney into place and sewed in the renal artery and vein. As soon as he unclamped them, the kidney pinked up with blood flow. Before attaching the ureter to the bladder, he gently massaged the tip of the narrow tube between two fingers and watched it spurt a few drops of urine.
“No more dialysis for Mr. Zimmerman,” Dr. Veale declared. “This total stranger’s kidney is making him pee.” He left Mr. Zimmerman’s own kidneys to shrivel harmlessly in place (removing them would add to surgical risk).
Meanwhile, Dr. Schulam was in yet another operating room removing Ms. Gluchowski’s kidney. He placed it in a plastic bag filled with a preservative solution and knotted it shut, like a goldfish brought home from the pet store. It was packed in a plastic tub, topped with ice, and loaded into a cardboard box marked “Left Kidney — Donated Human Organ/Tissue for Transplant — Keep Upright.”
A courier in one of Quick International’s big red vans drove Sherry Gluchowski’s kidney through stop-and-go traffic on Interstate 405 to the Los Angeles airport. Cynthia Goff, an operations supervisor for the courier company who had volunteered to accompany the kidney to Chicago, rolled the box into the terminal strapped atop her carry-on with a bungee cord. A pit bull, waiting to be placed in its travel kennel, strolled by and sniffed.
After security agents checked the box with a desktop scanner, Ms. Goff rolled the kidney down the concourse, past a currency exchange and a store selling Elmo dolls for Christmas. Escorted onto United 564, an overnight flight that would land in Chicago at 5 a.m., she stowed the box in the business-class closet, next to a flight attendant’s overcoat.
Airplanes carrying donor organs are granted special status, allowing them to move to the front of takeoff lines and ahead of air traffic. Mr. Hil, who tries to avoid routing kidneys on connecting flights and always schedules backups, said none of his registry’s transplants had been held up by transportation problems.
By the time Ms. Gluchowski’s kidney made it to Loyola and was transplanted into Mr. Terry, it had been cold for almost 12 hours. Early studies have found no evidence that shipping live kidneys such distances affects their immediate function.
Chain 124 ended at Loyola because Mr. Hil had arranged for the final kidney to go to a hospital that had produced a Good Samaritan donor to start a chain in the past, thus closing a loop. Dr. John Milner, a transplant surgeon at Loyola, said he then selected Mr. Terry to receive the kidney because he was the best immunological match on the hospital’s wait list.
When Dr. Milner called with the news in early December, Mr. Terry was floored at his remarkable good fortune. Having felt unfairly condemned when he was first placed on dialysis, he now wondered what he had done to deserve a gift that 90,000 others needed just as much.
As it sank in that his would be the last of 30 interconnected transplants, Mr. Terry began to feel guilty that he would be ending the chain. “Is it going to continue?” he asked Dr. Milner. “I don’t want to be the reason to stop anything.”
“No, no, no,” the doctor reassured him. “This chain ends, but another one begins.”
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Hey Gerald,
This is posted in news stories, just FYI.
Take care,
okarol
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The good news is; my blood work numbers are good enough to undergo further testing to see if I need dialysis at all. The bad news is; I start chemotherapy next week.
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I hope that (no dialysis) works out for you GL. What a wonderful thing it would be :pray; And for the other treatment,,, How do you do with it? as in, do you dread it because of how it makes you feel type thing. From here, it makes me feel ill 'for' you as i wish this wasnt something you had to endure, but hopfully you take it better than how i feel for ya... All the best wishes for you.
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Wishing that all goes well for you GL. It will be great to be able to stop D but chemotherapy is a beast of a different color. I hope you get the desired results, you deserve it. Keep fighting :boxing; :boxing; :boxing; God Bless, Bill
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Hope all goes well with your treatment GL. Kind of think it's out of the frying pan and into the fire, but we're pulling for you.
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It would be lovely if you could give up one of these psychic drains. :cuddle;
Aleta
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BosMom:
I single you out just because.
Last July I was carried into the hospital, out of my head and having hallucinations. The things I saw in that state of mind were as real as the keyboard in front of me now. I believed them to be true. It would require a book to tell you in detail the things I saw and did, yet, my wife tells me that most of this was not true. I invented them. I have a substantial amount of confusion about all of this. My creatinine at the time was around 17.0, now it is about 2.8.
I saw drug transactions between nurses and street people who met in my room. I asked for and was given unprescribed drugs to help me sleep although I know I had been awake for more than four days in a row and nothing seemed to help. I witnessed two janitors beating another and went to help, but no one recalls that incident but me. A nurse came in one day to check my “vitals” at one AM at night and I thought she was there for sex, so I tossed her out, physically – and today I saw her again at chemotherapy and I discovered that one hallucination was not a hallucination at all.
I talked briefly with her and she remembers. I remember a male nurse pimping her to me and me saying no way. I recall her dancing a suggestive dance in the background when I was having trouble with another group of nurses (confirmed) who tried to get me to change my cancer protocol without my doctor’s consent. With that, I put on my clothes and left the hospital among threats to me and my Oncologist. They sent to cops to get me at my home. That was about midnight or later. A couple hours later I checked back in voluntarily. All true.
Fast forward to now. I am on dialysis three days per week and one day for chemotherapy. My Vascular Surgeon wants to do the seventh surgery for my fistula but I haven’t the time. He wants to do a one foot long cut to “raise the vein”. But today I saw that nurse. I asked her where I had seen her before and she told me. I was mortified. Words would not persuade her that my motives where otherwise.
That isn’t all! I haven’t anytime to live. All of my waking hours are at some healthcare institution, except weekends. I am 73 and I have wasted away to hanging flesh and bones. In early 2008 I was competing for a World’s Record lift in the squat for seniors 65 and above. I had the World’s Record in practice, I was just waiting for a competition to come along when a forest fire burnt our home to the ground.
Well, this all came at the end of a period where I was taking inventory about my life and what was left of it. I am now going to dialysis and chemo everyday for one or the other, have a surgery scheduled for April and no time for me or anyone else. So, I insisted on a re-evaluation of my kidney function based upon previous conversations with my Nephrologists; that my kidney function was on the “cusp”, and now that my numbers are better, I want out. Resistance. Was that Doctor lying to me? Does anyone give a shit? I need to clear out some time for myself.
They will do the testing for my kidneys only because they know I can be hell on wheels. But I do not like the flavor of what I sense.
So, I am in a very deep black hole. I am angry. I do not wish to spread the ill will, so I have been silent for a while. I will work it out, maybe. Right now I feeling very negative about life – as in, what’s left of life. To quote Peggy Lee; “Is that all there is?”
gerald
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gl, there is no such thing as "spreading ill will" on IHD. It's important that you feel like you can vent your anger here without risk. People don't have to read it if they don't want to, but this is no time for you to go silent.
It's not always easy to know what to do to make yourself feel better. Sometimes I find it helpful to just keep my mind/body occupied. But many times, I just have to unload. It's like having a boil that needs to be lanced. So I have, on many occasions, come onto IHD and have spilled my guts and ranted and raved, not because I thought anyone could really say anything to make the pain go away, but, rather, because the weight of keeping silent became too much. I think it is unfair to put the burden or responsibility to remain silent onto the shoulders of anyone who is fighting something like ESRD.
I'm angry, too. I've been angry for years, and I am not sure the anger will ever pass. If venting on IHD helps you cope with the anger, then use the board for that purpose. That's what it is here for. Does it help you to keep silent, or is silence your enemy?
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Gerald, I'm sorry to hear you're down in the dumps. I spent three weeks in the hospital myself this summer without eating and a hose in my mouth. I tripped pretty hard on the drugs they gave me,too. But being an old hippie I was able to handle it. I saw Jesus on the cross, ghosts of black people in mourning, and all kinds of crazy things. But, after getting on dialysis, I'm feeling pretty good, walking three miles a day. But this is after four months of adjusting to dialysis, surgery after surgery, test after test, and going through quarter-million dollars worth of healthcare. I know my health won't last though, because I've had Hep C for over twenty years. Today, for example, my off dialysis day, I go in for a C-Scan of my pelvis at 8AM. But when death comes I don't mind. It's the way of things. I'm actually looking forward to traveling to the next dimension.
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Hi, Gerald.
It sounds like a really rotten patch you are going through. :cuddle;
I wish it could be better. I take a friend to chemo treatments and she is also reeling from how much of her time it takes. I hope for you (and her) that the outcome is better and makes slogging through the days without any personal time worth it.
I understand your anger. It just sucks.
I'm sorry.
Aleta
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It wasn’t the dark clouds that blotted out the Sun that made this a sad weekend; it wasn’t the dialysis that seems to go on hour after hour for no good purpose that made me grumble; no, it wasn’t the chemotherapy although I still have my hair; it wasn’t that Joan was working on her quilting project and got lost in the sewing room for days leaving me to my lonesome self; it wasn’t Auggie the Doggie who laid a big one in front of my closet on the floor that brought on this grim mood; no, it wasn’t any of those things at all.
No, something happened that was very much like a death in the family, someone bought my Harley.
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Disaster!
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Oh, Gerald. I am so sorry to hear this. I know how much it meant to you. Xxx
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So sad when you have to sell or get rid of something you love. Seems like you lose a part of yourself. :cuddle;
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{ picture of a broken heart here}
Im sorry GL... more hurt :(
wish i was more upbeat and could say something to make it better
but i wish for something to come to your thoughts to lift ya up about the whole thing..
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Boy Gerald, do I know that feeling! When I sold my Road Glide it was like I'd lost a member of the family. Maybe sometime in the future...
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Sorry to hear this, Gerald. I think my husband will feel the same way when he finally sells his little Triumph Spitfire. He has so many memories in that car - we rode all round Britain in it, then had it imported to the States. It is right-hand drive, don't know if that will be a selling point or a liability.
What model of Harley was it? Gwyn has a V-Rod. He will probably have to sell that, too, at a huge loss as well, though it has no where near the sentimental value of the car. It can take a remarkable amount of strength to recognize when it is time to let these objects go.
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I've always wanted a Harley. I haven't been able to talk my wife into being my motorcycle mama though. I have found the threat of getting a Harley handy however. In this mid-size Colorado town they do allow people to have chickens - I really don't want chickens, but my wife does. I told her if she gets chickens, I get a Harley.
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:'( :'( :'( :'( :'( :'( :'( not the Harley!!
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09 Heritage with 3,500 miles. Short ape hangers, minimum mufflers , fuel injection to match the exhaust. Gone. No more taking over small towns, no more terrorizing little old ladies, just Social Security.
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Gl - read in another post that you are off dialysis. Why not celebrate and get another one. I have an 04 soft tail (my first bike) and after doing a BUNCH of work on it, the engine blew up. I can't stand to sell it, and hoping to fix it. BUT I turned around and bought a 07 Ultra Classic from my good friend. It has been said a number of times about Harleys "if you have to ask, you wouldn't understand any way." Now that summer is just round the corner here in Virginia, I can't wait to get out in the wind again.
GL - just go get another Harley..... :thumbup;
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OH......
NOW I understand.....
:thumbdown;
Of course that feels heart-wrenching. :cuddle;
But now on to other adventures perhaps? ? ? ?
:grouphug;
Aleta
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Growing old is tough business, especially if you have been active most of your life. I’m not especially sociable; reading, computer and genealogy research can occupy my available time. Yet, the strange people who inhabit our planet do come by and ask the same question, “How are you?”
How am I? Yes, how am I? Uh, sick. Inveriably they will ask what sort of sick are you? Tell ‘em you have cancer then sprinkle mythical germs on them with your fingers. They will go away.
I managed to get off dialysis. I have had that experience, now I am on a new adventure. What does a 73 years old do in retirement? I have either been sitting in a chair or laying in a bed. All of that carefully crafted muscle tissue has wasted away. Maybe it saved me. Don’t know. So, I do free standing squats at least once a day (20) and 20 half pushup.
Boring huh?
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The reading, computer and genealogy research doesn't sound TOO boring. And you do some lovely writing.
I'm looking forward to retirement.... but I don't really know for sure what it will be like. We will be moving from warm Tennessee to cold Massachusetts, down-sizing into a living space half the size of what we now have. Hopefully we will be able to travel more.
But the wound of reading, and doing computer things sounds rather enticing. :cuddle; To be honest, I feel somewhat tired of the long hours of work. Don't we earn the right to relax more?
:cuddle;
Aleta
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Aleta zounds like your are doing things in reverse. Most people retire from northern states to southern. The property taxes up here in the northeastern states are crazy. Patty and I would love to be able to sell our NJ home and property and move to eastern Tenn. I honestly don't know how we will be able to survive around here financially when we're fully retired. Chris Christy has a lot more work to do in this state, lol. So far all he's done is tick off the people in the teachers and state employees unions.
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Just came back from chemotherapy. My creatinine numbers are climbing again (blood work) after a month of slowly getting better. I am worried that they’ll pull my chain and drag me back into dialysis. Next blood test is Thursday. This much like watching the earth beneath your feet disappear a little at a time while staring into the abyss.
I had two Nephrologists until today, now I have one. The signs are that they disagreed on permitting me to go without dialysis.
gerald
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You'll handle whatever comes, Gerald. And you have us to support you, no matter what. Hold steady...
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Bloody hell!
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Aleta zounds like your are doing things in reverse. Most people retire from northern states to southern. The property taxes up here in the northeastern states are crazy. Patty and I would love to be able to sell our NJ home and property and move to eastern Tenn. I honestly don't know how we will be able to survive around here financially when we're fully retired. Chris Christy has a lot more work to do in this state, lol. So far all he's done is tick off the people in the teachers and state employees unions.
Yes, we KNOW it is backwards, but our daughter lives in Massachusetts and recently bought a house with an attached apartment so we could retire into it (handy to have the grandparents nearby for baby-sitting, hey?)
Gerald, you know creatinine is like blood sugar. It goes up and down. I'm hoping this is only a temporary rise and not a trend.
:cuddle;
Thinking about you and keeping my fingers crossed for good numbers on Thursday.
Tomorrow we will be doing the looooong 15 hour drive back home to Tennessee. It is still hard to wrap my head around living in Massachusetts, but that is still a few years off.
:clap;
Aleta
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Back in the day I was at Ft Devens getting my classified training. Ayers, Massachusetts. Ugh! Unit moto: No pay, no promotion, no recognition. Had to have an IQ better than 125.
Right now I feel miserable. Body betrayal. I am making decisions. I am using polite words, I hate dialysis and if they want to try and drag me back in there . . . . well, they'll have to drag me back in there. Crap!!
At chemotherapy someone asked me today if I was "an old hippy". Perhaps I should have told them what war means to a person behind the trigger. Perhaps . . . . . . . . shit, who gives a damn.
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My friend and fellow Vetran of the Army Security Agency is dying.
"Gerald, listen to the doctors! If you need dialysis, accept it. My numbers are pretty good, kidneys working fine.
Last week's blood tests have resulted in my primary physician taking me off all meds she had prescribed except the prednisone (5mg daily) to keep the uric acid levels down.
Still on various meds to deal with the kidney/cancer problems. Thankfully, no chemo for me. Oncologist says I can have organic cheese as part of a low-fat diet - just fine with me, since I buy the cheese when it goes past pull date and age it for another year or so - unlike most cheese, it ages nicely to become very sharp. Lord only knows that my diet has become very "low fat" - lots of salads, et cetera.
I am very thankful for the prayers that have been, and continue to date, for my health. They are indeed most welcome, and being answered.
We have had very good support within the local community as well; my youngest son has moved in with us (found a job locally) to help out with the household tasks I now find difficult to do.
Dropped from 259 to 212 pounds as a result of the ordeal. Gave away a tuxedo and a suit because they are now way too large for me.
Hang in there, Gerald... God isn't done with you yet!"
Duane Vincent
Knight of Columbus
Vincent de Vancouver
..........................
I gotta get squared away and can't. He has bone cancer now. You ought to hear this guy speak, he sounds like God.
gl
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GL - your first line confuses me. "My friend and fellow Vetran of the Army Security Agency is dying." Just wondering who you are referring to. I too was in the ASA - early 70s. grumpy
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:rant; I hope you're feeling better, soon, no, I hope you're feeling good, now! :waving;
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My post contained the complete letter from my friend. Why have you failed to notice this?
I was with the ASA when they were forming (1958). I am also aware that the entire organization changed with the advent of Vietnam due to preceived manpower needs. It was no longer a "thinkers" unit. And, after Vietnam no one in the ASA was risked in combat.
gl
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Here is something to think about: How would you feel if you discovered that you were on dialysis four months longer than necessary due to the inattention of Doctors and Nurses? And, the only reason you aren’t still on dialysis is because you insisted on some testing.
Let that one wash over you for a while and you just might know why I am angry. One’s sense of humor becomes difficult to find.
gerald
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Would some Tim Minchin help?
www.timminchin.com/
I saw him live yesterday in DC. :grouphug;
Gerald those 4 months of dialysis are water under the bridge now. Be angry, but don't let them interfere with what you are living NOW!!!!
:cuddle; Aleta
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I can barly let that just 'wash OVER me'.. it makes me feel as if i were drowning!!!!!! You wernt around when i was going through constant questions on this 'testing' of hubby stuff but i about wore my welcome clean out of here.. And still, when i read this from you, it fills me with i believe some of that same anger you now feel. See, when Bo was just starting D, he never swelled in his legs etc. Within a month he did swell each treatment and still does to this day. I wonder now if there is ANY possibility that he could be tested to clear for some 'time off'. It fills me with crazy head stuff to think he's gone through all this for not. I wonder if it would be of any use now to try again... So, i DO see why you could have anger.
Now, about you otherwize... whats up? Does this mean that your still kicken it w/o the machine?
wishing you well, and prayers that each of us can let the anger lift. I dont like the feeling from it, and i wish it gone
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Oh, I just love Tim Minchin, Aleta! Have you seen The Pope Song? Did he sing his I Love Jesus song in DC (I think it's also called The Evolution Song)?
WARNING: You do not want to look those up on YouTube if you are easily (maybe even not so easily) offended when people write satirical songs about religion.
Gerald, I feel for you. Very frustrating to think you've undergone needless suffering. I'm still angry about some mistakes that other people made over 30 years ago. Strangely, I went in to ESRF due in large part to medical malpractice, but that is not where my anger lies. I guess with them I accept that people make mistakes. I am angry about how I was treated afterward by the people who should have known better, and that created a different kind of needless suffering.
Like Boswife, I can relate to your anger and think it is completely understandable. Also like our darling Boswife, I hate the feeling and think we're all better off if we can let go of it. I'm not good at this and in no position to tell you how to go about it, so I'll just leave it with I'm really sorry you find yourself in this situation.
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Cariad, he did not do I love Jesus (interestingly, he doesn't consider that one of his better songs). He did Confessions, Storm, and If I didn't have You. All were excellent. I think the Evolution Song is called Logic, or something like that. Anyway, it was an amazing day! Paul Provenza was the MC, another hilarious and extremely intelligent guy. I couldn't help but think of you while we were there. The boys would have had a blast, as would have you and Gwyn.
Gerald, find some good comedy on YouTube to lift your spirits. :2thumbsup; Nothing heals quite so well as laughter.
Aleta
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To honor caregivers everywhere, I pulled this off the HuffPo website: ................................
Here's what I learned: If it's too heavy, don't move it. And, that realization does not come without a cost.
I learned the hard way.
The other day, I felt the sudden need to clean the wood floor in the dining room; a process that would require removing all the furniture. First, I moved the solid mahogany dining room table that I inherited from my grandmother. Easy as pie. Then I moved the large breakfront and corner cabinet. When I leaned over to lift the edge of the area rug, I felt a twinge between my shoulder blades.
But did I stop?
No, I did not.
I rolled that sixteen-by-twenty foot double-weave into one long log and proceeded to drag it across the floor. That's when I heard it. A pop. Or a ping.
It's hard to remember the exact sound because my head was consumed, almost instantly, with a burst of white-hot pain that knocked me to the bare floor. When I came to, I called to my husband in a quivering voice. "Please," I begged. "Help me."
He didn't hear me. His concentration was on the television.
I called again. "I'm on the floor. Can you give me a hand? I can't move."
"Can you wait a second?"
"I don't think so. The pain is spreading. I might be having a heart attack."
"But it's the Final Four," he shouted from the couch.
During a commercial, he tossed me a bottle of muscle relaxants leftover from his own back injury after shoveling snow one long ago winter.
"This prescription is expired," I said.
"Foul!" he shouted. "That was a foul! Where's the ref?"
It turns out that muscle relaxant dosages vary according to the weight of the user. As a result, I have only a vague recollection of the 24 hours that followed. During that time, no one noticed my dilated pupils or slack expression. If I had been there, I'd have called an ambulance.
I have been lying on the floor now for six days. From this angle, I can see clumps of dust under the end table, a stray sock under the sofa and a nest of what might be silverfish tucked beneath the baseboard. Luckily, my urge to clean is dulled by medication.
This morning, my husband stood over me to ask if I knew where he'd left his iPad. He also needed to know where I keep the Wet-Vac and if I paid the mortgage. Obviously, he misses me.
Later, a crash came from the kitchen. "Yogurt's dripping onto the floor!" someone cried out. "Mom's going to be mad."
I increased the temperature on my heating pad and closed my eyes. Clean floors are totally overrated.
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:rofl; :rofl; :rofl;
Okay, does this give me an excuse to NOT get my house ready for Hanify to visit from New Zealand????
Her arrival is in less than three weeks and we are less than half way through cleaning out the closets. LOL.
Aleta
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tickled my innerds.. hit a real funny funnybone :clap;
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Chemotherapy today, last one until September, maybe never. Have to see Oncologist next week. Nephrologist tomorrow and another round of blood tests. Cancer Center blood test showed Creatinine down to 2.6, should be good enough. Hemo up to 12. Sounds like a cure. Hodgkin’s Lymphoma is a blood disease, at least remission. Vascular Surgeon is antsy to do the seventh surgery for the fistula. This incision is supposed to be a very long one. Thinking.
Provocative Question: Do I live for dialysis or do I do dialysis to live?
I may say no to more dialysis if it is recommened. There is no hell like dialysis.
gl
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I say that if you HAVE to do dialysis to live, take it home. That way life is much more flexible, and you aren't stuck with arranging your time/life around your appointments.
There are some down sides to home hemo, though. It does take some room and organizing. BUT, we found it to be a very viable option that allowed us to both work full time. Do think about it.
:cuddle;
Aleta
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You dialise to live, and willowtreewren (what a lot of letters...) gives a good suggestion. I still am waiting to get HH, but even with in-centre its still worth it. And no D is not my only problem, just one of many. Come on GL you have to much humor inside you to pull out now.
lots of love, and strength Cas
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I got those dialysis blues,
three times a week
four hours each time
My fistula leaks.
I got those dialysis blues
At the TV I stare.
My IPAD battery is dead
and I'm stuck in this chair
I got those dialysis blues
The first hour goes fast.
The second hour gets slow.
By the fourth hour,
my blood pressure is low.
I got those dialysis blues.
But across from me.
Sits a Goddess from heaven.
Puking for all to see.
I got those dialysis blues
But I'm not sad
In four hours it's over
And I will be glad.
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Okay! I do not need dialysis. The Doctor says I am on my way to a 30% kidney function. He noted that since I have been off dialysis (three blood tests) my numbers have been rapidly improving. He also said that he has had only two cases where a patient recovered before six months, and only one after eight months of dialysis (me).
Will be seeing the Vascular Surgeon about taking that chest catheter out. They are still telling me to do the forearm fistula.. Thoughts?
gl
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Cancer is in remission for now. A good day all around.
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Gerald, you may find it interesting to return to your very first post on this thread. Read all ten pages, and then sit back and marvel at the extremely good fortune that has been bestowed upon you.
You do not seem to need dialysis any more. Do you have any idea how miraculous that is? Now go and read the stories of all of the other people here on IHD who do not need dialysis anymore. Can't find any? That's because there aren't any. Just you.
I've heard people say that miracles can happen. I haven't had any miraculous things happen to me, but here on IHD, I have witness three miracles...
1. Paris, who was told she'd probably never get a transplant because her PRA was about a billion, got a transplant.
2. Cariad, who because of the clinical trial in which she participated, is now for all intents and purposes CURED of ESRD. A CURE!
3. And now, you. Your doctor has told you that you are the only patient he has ever seen recover after eight months of dialysis. What does that feel like? I'd love to know...how does it feel to have such profound despair lifted from your soul? The rest of us can hardly imagine it. I don't want to imagine it because it is too painful to imagine something that probably will never happen. So maybe you can tell us how that feels?
Cancer in remission, recovery from ESRD..."a good day all around" is probably the biggest understatement I've heard. I hope you will celebrate your miracle! And spare a thought for the rest of us mortals who will never recover.
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Thoughts on the VS? Why go through another surgery that could affect your improving kidney function at this time? I would nix it.
And for all the other news....
:bandance; :cheer: :clap; :yahoo;
Aleta
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:yahoo; :bandance; :bandance; :bandance; :yahoo; Great news Gerald!!! Now if hubby could get off dialysis after 16 years...... Don't think that is going to happen!! :thumbdown; He does do home hem though.
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congrats GL, truly marvelous
love Cas
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:cuddle; couldnt be happier for you gl.... almost hard to speak it's kinda overwhelmingly ....hum,,,, no words... Just know im delighted head to toe :flower;
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I hadn’t slept the night before seeing the Nephrologist this last time. I worried about returning to dialysis and had decided to resist returning to that chair of horrors. My wife and I had a six hour discussion on my options the night before and I was still procrastinating at 6 AM when I finally decided that I wasn’t going to get any rest. Yes, I was considering suicide by just boycotting something that was the ruin of my life, dialysis.
I had all of my blood work sheets trended out and was prepared to argue my case. I have never trusted doctors who only gave me passive attention, or had to look at the file to recall my name; one must fend for themselves. In this situation, I had been handed off from my original Nephrologist to another Doctor.
To bolster my case, I had a favorable blood test from the Cancer Center the day before the meeting. Alas, none of that was necessary.
How did that feel? To be frank, I don’t know. I was and am, so tired I just want to sleep. I did get in twelve hours last night but today I can hardly keep my eyes open. I fell asleep for a half hour just sitting in a chair while starring out the window. Perhaps that is relief or I am just catching up after eight months of undetected stress. And yes, this morning we talked about the first day of the rest of my life.
Outside it is overcast with a light drizzle and a slight wind. I took Auggie and Mama-kitty out for a long walk in the woods. Those two played hide and seek and seemed at peace with one another. I watched an engineering crew set up a GPS (temporary) station on our property as a part of a major highway revamp nearby. We have the only clear view of the valley below.
Perhaps I am jaded, having been through various cancers so often before. Maybe I am hardened by the abuse sustained as a youth from a pair of violent alcoholic parents. Or this may have something to do with fighting my way to success in my profession after starting out with the clothes on my back and nothing else. Or it might be that after all of my assertiveness with the dialysis people, it turns out that I was right and they were wrong. Or, as my dying friend, Duane said in an e-mail yesterday, “We prayed for a miracle and you got one, now go to see a priest and return the favor.”
I see myself as a compassionate and emotional person. That much should be evident in my politics. So, I say to all of you, this isn’t about me, it is all about you. I have seen and felt the suffering of a creatinine so high that it would cripple most people, the pain and tedium of dialysis as it becomes the dominate feature in ones life, and the absolute despair when there seems to be no way out. Remember Beachbum, but remember those who don’t complain and live and endure in quiet desperate agony. And never forget those who give up their lives to aid others as do the legions of caregivers.
Now I have good fortune to be free from all of this. What does it feel like? It feels like I owe somebody. So, after the doctor’s appointment yesterday, I went next door and made the rounds and talked with those who were hooked up to that damned machine. And I thanked the staff.
Next week I have to see the Vascular Surgeon about a fistula. Maybe, maybe not. Then there are cancer follow-ups.
gerald
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A Texas jury on Monday sentenced a former nurse to life in prison after finding her guilty of killing five patients by injecting bleach into their kidney dialysis lines, the Lufkin Daily News reported.
Kimberly Saenz, 38, was found guilty of capital murder in the case last week. Jurors could have recommended that she be sentenced to death.
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truly unbelievable
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Keep writing, Gerald. I so enjoy your thoughts.
The clear view of the valley sounds lovely....pictures?? :pics;
:cuddle;
Aleta
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The breeze was slight on that cold and overcast day. It was the sort of cold that penetrated, sending chills into your bones. I had a mission that day and that was chilling enough, I didn’t need the weather. Yes, I was on my way to see my Vascular Surgeon. With three weeks of no dialysis, this Doctor had to answer some questions: Shall we do a seventh surgery for a fistula, and what about that chest catheter?
As soon as we arrived, I headed for the restrooms. I pushed on the door, then crashed into it. The restroom door was locked. I gazed around and discovered a sign that instructed one to ask for a key. With my knees together, I walked across the hall to the office and asked for the “P Key”. The Receptionist was quick and obviously experienced; she didn’t want some whiskered guy draining his tank in front of her window. I crawled back across the hallway and fumbled with the lock, wishing I had brought a large clothespin for pecker-control purposes. I hear it works. Uh huh, and the World is flat.
Once inside that sterile and tiled room, I hung it out and it, well, uh . . . . . went a little bit. Hmmmmm! Underperforming, not the first time. But that was different, it was for . . . . . . . . . . . . . . . . . Oh, never mind. I put it away and went back to the office, and they called me in right away.
The Vascular Surgeon is a big fellow, about 6’2” with a big sense of humor. He already knows I am off dialysis. The doctor grapevine seems to function very well. He says my Nephrologist thinks I am off dialysis for good, so we will be taking the chest catheter out.
I see the big needle on a tray and ask when we should do this. He says we should do it in about three minutes. Before I can says, “Holy Moly Needle-man,” he says take off your sweater as he lifts my feet up on the exam table that is already going up like an elevator.
Consider this; I remember some doctor pounding that catheter IN and I recall fighting back. Wife said I was hallucinating but my VS wasn’t denying anything. He has this huge horse needle in his hand. “This might sting a little,” he says. Then he aims that missile at my collar bone. He understated the sting by considerable. Then he does it a second time, and a third, then I don’t know what he did. By now he had a cutting tool in his hand and was sculpting, cutting, or something. I closed my eyes for a minute - - and he was finished and was telling me to press on a hunk of gauze for ten minutes or until the nurse came in. I felt for the two dingle-dangles, they weren’t there.
As he was leaving he said, “No need to do anymore fistula surgery, unless you get sick again,” and he was gone.
I ask the nurse to make the gauze and bandages large so I could claim I got shot or some other heroic act. No way, she slaps up a hunk of something and two strips of scotch tape.
Okay, across the parking lot to the blood lab. My Neph wants yet another blood test. Easy. I do the unnecessary paperwork going in and am soon sitting in the vampire chair. This is routine; use right arm, vein is hard to find, rubber band, squeeze, don’t squeeze. She pokes me right at the bend of the elbow. A sharp pain shoots to my hand and my thumb is pointed rigidly upright and it is in great pain. I try to make light of it by telling my wife that my thumb has an erection. She says it’s bigger than my penis. I look back at my thumb and wonder.
The nurse, in her infinite wisdom, asks, “does it hurt?”, and concludes she must have hit a nerve. She doesn’t take the needle out and try again, she continues to draw blood. Did I miss something in the common-sense class? She finishes. I’m holding a gauze on the newly acquired hole in my arm, my thumb has taken to shaking. Fingers, same thing.
Out comes the scotch tape and I am sent on my way.
By now I have to pee, this time for real.
gerald
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I love your writing , Gerald!! It is wonderful that the neph thinks you are off dialysis for good!!! :2thumbsup;
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I agree with Del. :2thumbsup;
But I'm surprised at the difficulty in getting that cath out! :banghead;
When Carl had his TX, they had trouble getting his in and had to switch sides. It delayed his surgery by an hour and certainly put me on edge, as I was waiting outside his room for what was supposed to be a 5 minute procedure....
Gerald, I'm still thrilled with your good fortune. :clap; :clap; :clap; :clap;
Aleta
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Great news, Gerald, as you have enough on your plate with your other health issues. Maybe you should celebrate by buying another Harley. Hope you won't disappear from this Forum though?
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Oncologist called. Cancer has returned.
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I just said a very bad word and in tears. I'm sad. Prayerful is all I can offer. Be the strong man you at gl. A hug and a prayer for strength and healing.
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My thoughts and prayers are with you, Gerald.
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I realize that this isn’t dialysis but what the heck. My Oncologist reported three tumors of Hodgkin’s Lymphoma per a CT scan I had last week. This will be my third bout with this particular health problem. These tumors are in the upper abdomen. The good doctor offered some options; go to a large hospital and seek some treatment that he isn’t aware of, radiation, or a harsher chemotherapy.
I have no intention of going to UC Davis or UCLA where I know no one.
Radiation may overlap an area previously radiated for prostate cancer. If they do overlap, that option is out.
I have undergone a chemotherapy protocol ABVD, where your hair falls out, eyes turn red and you absolutely cannot expose your skin to the Sun. Or suffer almost immediate blistering. I can do this one if I must. The chemo is spread over six to seven months. The stuff is brutal.
I feel that this one is the final show since the options are dwindling. I will get better or I will croak. Now, if you will all gather around my bed I will reveal all of the secret military, currently irrelevant stuff I know. And, no, Sputnik did not carry a secret code. I checked personally.
gerald
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oh for crying out loud! Don't know what to say. I'll ask my dad for prayers. I' sorry GL. Keep strong.
love Cas
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Cheers, mate.
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I'm sorry to hear about your health problems getting worse. My sister got a hip replacement at U.C. Davis, and they did a good job. You might want to consider giving them a shot.
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Sorry to hear about this Gerald. I know you're not a religious man but I am so prayers will be said for you immediately. This health roller coaster sucks! It's like you beat one thing and then another is right there to take it's place. God bless you and heal your body, Bill S.
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:grouphug; Stay strong!!
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Cr@p! I am very upset by this news. I will respect whatever choice you make, but I personally would hate to lose you.
:embarassed: :'(
If you have fight left in you, please fight. Do not go quietly into that dark night.
:cuddle;
Aleta
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GL I echo willowtreewren - if possible - fight. Don't want to see give up. Grumpy
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I enjoy your wit, your writings. Whatever you decide, I wish you well. :grouphug; :grouphug;
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Gerald , I only know you through your writing but much of your situation is similar to Laurie's . Through your writing you have made me both laugh out loud and cry . I think you should spend your retirement writing a book - I guarantee it will be a bestseller. An autobiography or at least a novel based on your own life experience . Our house did not burn down and at least Laurie had a happy childhood . He had to share his training to use the machine with a 17 year old boy - like Laurie said at least he was healthy in his youth - and here was this boy on dialysis already . I feel a bit like Pollyanna but you get the gist !
I really hope your news improves . Good Luck !
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Gerald, I am really sorry yo hear about this downturn. keep on fighting. xxxx
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I finished a novel in 1996, a Sci-fi called "The Restless Among Us." It is much like the Grand Hotel of a large space craft, the lives the people led and the adventures they had. Never published, never tried to get it published. I wrote it when I first retired. I had thought about putting up one chapter at a time on this forum but that isn't the purpose of this place; besides, some of the chapters are more than 50 pages.
I commented on single-source economies (the weaknees of), religion, and the origins of humans on Earth. No fantasy stuff.
The most memorable experience in writing that bokk was when I approached a sex scene, I began to sweat. So, I didn't write a sex scene. Some writer.
gl
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I am happy you didn't write a sex scene - I don't read them as they make me feel uncomfortable ! Sex is such a personal thing. I cringe when the sex scenes come on in a movie , especially if watching with one of my kids - who are all married with kids of their own ( except the youngest ) . Some reader !
I like the idea of serializing your book here - there is a section for it ! maybe a couple of pages at a time . Maybe you can use it as an opportunity for editing or a slight rewrite . Come on Gerald , we could all use a distraction from illness . That is the most frustrating thing about this illness - you have absolutely no control . You are sick , sick , sick and just have to deal with it .
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Bruck, bruck, bruck! :rofl; :rofl; :rofl;
I would love to rad the book. :2thumbsup;
I say go for it.....
Aleta
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Do you really want to read a serialized 526 page book? Really?
This book was therapy for me as I wound down from the stress of work, there is no humor there, but those who have read it claim they like it. However, it is difficult to decide who is being polite and who is serious.
The first draft was 1250 pages, I edited it down to less than half that much. I will have to find the disk, load it up and we'll see. It will be listed in the non-dialysis section.
You understand that my ego is at stake here, don't you? And the book was finished about 15 years ago?
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Yes Please
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I posted the Prologue and two chapters this morning. See: THE RESTLESS AMONG US.
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The entire book has been posted.
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And no one will read it. I am embarrassed.
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Hi, Gerald! Just started your book. It's my intention to read a chapter a day--these old eyes of mine can't handle the small print for more than a short stint at a time. I'm eager to read it though--I haven't read any science fiction in fifty years! All the best to you, as always.
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oh gl, you make me gasp with one post, then get my funny bone the next...
i copied the whole thing .............. some day i will read :)
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Thank you Gerald , I too intend reading at least a chapter a day . I haven't much time just now for more as Laurie not well - he goes into hospital on Monday for his surgery . I have read the prologue and was glad us Aussies got a mention !
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I've just begun Chapter 12, Gerald. What an enthralling book! I can barely put it down!
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Thank you, I love the applause. You are halfway through, let's see if your enthusiasm holds up.
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Just finished your book. I was sorry to see it end! Lots of adventure, lots of ideas. How about giving us some short stories with this setting? You're a born storyteller...
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Gerald, I have finally recuperated to the point that I can read again. I am truly looking forward to your book and have read the first couple chapters. So far, I'm enjoying it.
:2thumbsup;
Aleta
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Gerald , I am enjoying your book so far - need some escapism right now . Can't imagine why you didn't submit it to a publisher !
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I had retired from a very high pressure job and was looking for something to do. This was in the days before PC's. I wrote 1250 pages on a typrewriter, used cement blocks to hold up a door from the pumphouse (desk) and sat in the garage. The more I wrote, the less I liked it.
So, I edited it down to 526 pages, double spaced. Then I bought a little Brothers word processor with a four inch screen and retyped the entire book. Then I bought a computer and retyped the book again. In all, I rewrote or edited it six times. I still don't have it right. Finally, at the urging of a bunch of people who hadn't read the book, I sent it to Penguin and they didn't have the time to read a first effort book. So, I shelved it.
I started a sequel but ran out of ideas. I still have most of that.
I will say this; ideas come from social intercourse and I haven't been much further from home than a doctor's office for about a decade. I do need to talk to some unfamiliar people.
gl
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Am halfway through the radiation protocol. The stuff takes me down by upsetting my stomach and it causes my colon to shift into high gear. This is nothing compared to dialysis. I hope dialysis is a thing of the past.
I managed to get into an argument with the Radiation Oncologist yesterday. It seems the nurse put me into a room to wait for the doctor and she and the doctor forgot I was in there. So, with my usual shy and retiring personality, I went out in the hallway, chewed nurse butt and instructed her to find the doctor, who had been lounging while watching TV.
It turns out that he was a Major in the Army and is now retired. There was a certain joy in giving a Major some hell. You might say that I always wanted to do that.
gl
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Good thing you're not on dialysis anymore because I doubt "nurse butt" is on the renal diet.
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You know they brew Moose Drool in Montana, don't you?
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You know they brew Moose Drool in Montana, don't you?
I do now.
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A man goes to see his Rabbi.
“Rabbi,” he says, “something terrible is happening and I need to talk to you about it.”
“What's the problem?” the Rabbi asks.
The man replies, “My wife is poisoning me.”
The Rabbi is very surprised by this. “How can that be?” he says.
“'I'm telling you,” the man says, “I'm certain she's poisoning me. What should I do?”
“Tell you what,” says the Rabbi. “Let me talk to her. I'll see what I can find out and I'll let you know.”
A week later the Rabbi calls the man and says, “Well, I spoke to your wife on the phone. I spoke to her for three hours. You want my advice?”
”Yes,” says the man.
“Take the poison.”
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My Nephrologist gave me a passing grade. Friday is CT Scan day followed by my Oncologist a week or so later. If I pass that test, watch out ladies, the Wild Man will be on the loose.
More or less. Maybe. Okay, I'll just give out a sigh.
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Nothing wrong with a good sigh of relief.
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Gerald - let's go party!!! :2thumbsup;
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I will be on chemotherapy for the next two and a half years. True! However, I need one session every sixty days. Not too bad.
Still have no energy, no ambition, no get up and go. Still take a lot of pills and they almost did me in two weeks ago. Wife found me unconscious and on the floor a couple weeks ago. Had to give up weight training - for now. Will be 74 in a couple months.
So, I watched both convention gavel to gavel. Almost decided that Ryan should go on Dialysis. He's a pipsqueak. He needs humility, dialysis ought to do it.
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He needs humility, dialysis ought to do it.
this reminded me of something my 73 year old Dad says-'Youth is wasted on the dumb!'
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Once every sixty days? Sounds like a big improvement over three times a week for four hours like I do. My time actually takes up five hours. It takes a half hour for them to get me off because my fistula is a bleeder. No energy? Try CoQ10 in its most bioavailable form. Read about it at Swanson's Vitamins website. Try male hormone boosters? But time takes its toll, that's the way of the force.
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Well Folks, I'm still here, having survived dialysis, still on chemotherapy, getting over bronchitis, and if that were not enough, I am getting over a serious case of shingles. When I get up to the Pearly Gates I'm gonna ask, "what the Hell I did I do to derserve all this?"
Last post was in September by a member who asked about the "60 day chemo" I take. I have done the seven months of chemo but it came back, did the radiation, didn't work, getting some new stuff.
Still coughing, still complaining, still truckin' along.
gl
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hey!!!!!!!! ole buddy ole pal!!! Its so good to see you :) I was getting pretty darn close to writing to see how you were and here ya are ;D Im sure sorry for that darn Bronchitis!!! Bo was down with it too and still fighting effects. i've never seen him this bad and dr sais it can still be months before he gets strength. It's AWFUL!! Hope your not in that same boat...
Sure hope to hear more from you... Im heading back to bed. Just got up to ..........start the machine :puke; ................. (ok, im grateful we have it at home but!!!! ) cause bo wants to run early today as tomorrow hes off. Up until this last illness, i was still battling whether he even needed it but im afraid that this last sic has done in his kidneys :( At least to the point that i believe hes a D man forever. Sounds like your still 'un hooked' ? Man am i ever proud of you for sticken to your guns on that one..
Well, i'd better hush and get some sleep... rough night and will be up shortly to 'hook him up' and i think im kinda scrambled writing anyway.. nothin new huh :embarassed:
Anyway, real happy you poped in and hope ya stay.. :cuddle;
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Glad to see you're still on the right side of the dirt with the rest of us. :beer1;
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Great to hear from you!
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Glad to see you're still on the right side of the dirt with the rest of us. :beer1;
That is the best line! :2thumbsup;
Gerald, it's good to hear from you.
Aleta
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How nice to hear from all of the ladies I want to marry. Gives me a tingle.
Bronchitis is stubbornly hanging on. Shingles still gives me a sting now and then. A lot of numb skin from that. I see the Oncologist next week, the kidney Doc gets a copy of my blood tests but I don't go in to see him. Kidney's are functioning about 35% or a little better, creatinine is at 2.1. I tried to pick up the weight training twice but I think it'll never work for me again. What the heck, I'm 74. I watch the news all day - boring. Seen every movie ever made.
Everybody get well, ya hear?
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Seen every movie ever made.
Every movie?? Hmmm how about High Fidelity? Or Living In Oblivion? Have you seen Mr. Blanding Builds His DreamHouse? The Man Who Would Be King? Never Cry Wolf?
Just a few movies I like.
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Secondhand Lion, the original Twelve Angry Men.
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Glad to see you back.
:flower;
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Saw Life of Pi. Maybe a #5.
Will see Oncologist today, next week more chemo and a blood test will go to my Kidney Doctor who will make noises about not coming in to discuss my blood work. I can read the chart just as well as he can.
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Oncologist says I'm as good as it gets for an old fart. He is a Dodger fan and I caused him some pain by discussing the World Series which my Giants won. We discussed changing GP's because the GP missed the diagnosis of lymphoma and said it was constipation, and it has been six months with this coughing from brochitis. Yep, Nephrologist gets a copy of my blood work on Wednesday when I do six hours of chemo. This may be as good as it gets.
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:cuddle; Ya always make me smile... Not cause of the awful crap you deal with, but ya always have a way of making 'it real' ya know. Wishen you good things on Wed.... :flower;
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Chemo was okay today. Measured creatinine and it is down to 1.8. I am never ever, for sure, going back to dialysis.
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Gerald, it just PISSES me off thinken you had to go through this D crap! only thing good about it is it got ya here :shy; Glad to hear chemo went ok :)
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50% function on my kidneys. Getting better everyday. Had a CT scan of my head to see if anything was there. Strangely, nobody is talking. Fired old GP, see new one in a week. Saw a Teabagger the other day. I was going to shoot him/it but my hunting license needed renewal. The NRA was whispering in my ear "do it, do it, . . . " Hearing test coming up. Still have chest congestion that leads to coughing spasms and fainting (ten months). Cancer is in remission. Still itch from shingles.
Other than that I'm doing okay.
Whatdaya mean everybody I knew here is gone?
My bucket list says I should be skydiving. Has anyone ever done that? Huh? Tell me, tell me!
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I can recommend skydiving. I was Australian women's champion back in the '60's. Should I arrange to come over and we could go tandem? Not sure what our chances of survival would be, but probably not worse than kidney disease and/or cancer. :rofl; :rofl; :rofl;
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Well hello :) and, im still here and so not EVERYONE is gone ;D And G, it's So good to hear your kidney function continued to improve.. I curse at those who 'thought' they had ya hooked!! :boxing; As far as some of your other stuff.. well :puke; Yea, thats what i think of it all.. ya know, Bo had that cough pass out thing. they called it 'cough syncopy'. I bet your wife is real fond of that one! Used to scare the crap out of me. He didnt seem to mind as he would cough, pass out, wake up (cause everything relaxed), and go on with it like nothing happened . Me, well, every time he coughed i thought was his last. I dont like it at all!!
I think ya ought to take up MaryD's offer!!! wouldnt that be a kick! Im still a scardycat on even thinken of flyen from the sky.. I do enough of that in my dreams.. :shy;
Good to see you, think of you often and hope your kicken the worlds butt.. :cuddle;
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How did it happen and how did I get here? Hmmmmmm!
I had two careers. One was a partnership in a retail business, the other in government. If you want to count my days as a spy for the military, then I had three careers. I was a superior junior partner associated with a dildo of a senior partner. I knew the business inside and out, he knew how to booze it up, fart in front of customers, and how to tap the till. So, I did what nobody would do, I split.
I took my money from the partnership, divorced Vampira and went to college where I was elected Student Body President. Some crazy fool recruited me from the campus to work in Butte County Administration. The big surprise there was about how many people work for government and have absolutely no idea what they are supposed to do. Then I took a job, City Manager in Alaska, a place that was in total collapse. Within six months I was diagnosed with cancer. So, I retire at age 48 to have time to enjoy my ailment.
Yep, my hair fell out – all of it – yes, down there too, my toe nails turned black and they fell out and after seven months there was no sign of the cancer (Hodgkin’s Lymphoma). What was I going to do? I had retired to be sick but now I was cured and unemployed. Well, Hell’s Bells, I went and got an everything blood test. And the doctors repeated himself, “You have cancer, Boy.” I just HAD to get that blood test, didn’t I. With the onslaught of bad things, my prostate began quivering in fright. Against my better judgment, I had surgery. This turns out to be a big deal: four hours in surgery, blood pressure almost vanished, and when they had me in post-op I was upside down on a slanted table. This puts me in a good place to watch nurses. To make a long story short, I may enter into competition for the World’s Smallest Penis.
Did they take more than they should have? Uh huh! Whack-a-doodle doctors. They whacked my doodle. Made it a noodle and it hides the live-long day. I should write that down.
A few months later it was emergency gall bladder surgery. Then the prostate cancer came back – so they strapped me down on top of the atomic pile. Radiation. I recall a large lady who was there for breast cancer radiation treatment, this was her first time there. She was very nervous. The candy striper was having no luck calming her down, but the lady did ask me what it was like. It was nothing, I tried to explain. She wanted details.
You’ve gotta know that radiation therapy for prostate issues is, uuh, down there. She knew. So, I gave it all in great detail. I slipped a nickname for the critical external organ, “Shaphotes”. She looked at me for the longest few second, then exploded in laughter. I asked if she knew what shaphotes was, and she put even more energy into her outburst. Then her face turned red. She couldn’t breathe. The candy-striper and I latched onto an arm to keep her upright. She was falling forward in laughing spasms, drool was running down her chin onto the floor.
Suddenly she caught her breath, looked up at me and started the laughter all over again. I hope that lady survived. I checked, my zipper was up so that wasn’t what made her laugh. I never saw the lady after that.
In July 2008 our house burnt down in a forest fire.
A couple of Januarys later, I was having gut pains and my stomach was protruding out further than it should. Went to the Doc and he sent me to X-ray. Later, over the phone, he told me I was full of shit. Well, I know that. He explained that I was constipated by an unusual quantity of waste product. Well, okay! So, I take some serious colon blast, lose a few pounds but the stomach is still out there. This wasn’t working. He and I went a few rounds for six months, then one day I began hallucinating. The next day was worse. Then I could hardly walk, couldn’t remember anything, so I finally said the magic word – hospital. I remember having to get a wheelchair because I couldn’t get up the ramp to the hospital door.
I have a vague recollection of being wheeled through a WWII Jewish prisoner of war facility just before someone was pounding something into my collar bone (temp fistula thingy). Whoever was doing this was cussing because I wouldn’t turn this way or that. Next, I woke up in a hospital bed with tubes attached to me and a rusted machine that looked very much like a beer keg refrigerator. Some scroungy guy who desperately needed a shave was reading a Good Housekeeping magazine.
It turns out that I wasn’t constipated, I had Lymphoma and that was doing something that blocked my kidneys. A small mis-diagnosis. Nephrologist said I had two weeks to live, a hokey-pokey comment at best,
Followed by eight plus months of dialysis and Nurse Ratchett. Come here, Big Boy, I’m gonna take some water off your bod.
Then a bout with Shingles. Then a continuing struggle with coughing and syncope. One incident; I passed out on my way in to the bathroom; hit my head on the toilet, broke my nose, and did something to my knees, one elbow and a shoulder.
I’m 74 now. Retired when I was 48. That’s 26 years of farting around with doctors. I know I had different plans for retirement.
gl
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Dang, Gerald. This just outright scares the cr@p out of me. Here I am wanting to retire (been doing the same job for 35 years!) and have been nothing but sick for the past year. I want to get well so I can actually ENJOY that retirement!
Flying to New York to see a specialist every two weeks (not covered by insurance) is getting mighty old and giving me light pockets! But your story makes mine look like a winner of the charmed life award.
It's good to have your posts to read again! Adds interest to this ol' place.
Aleta
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Good to hear from you, Gerald. Life's a giggle, isn't it? Keep posting, old boy. You're an inspiration!
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Hey, I am go happy you are still here. You are the most interesting person on here, take care
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A while back the news on the sequester was about chemotherapy patients who were denied treatment because Medicare no longer covered the cost of the drugs. Of course, I talked to my Oncologist about this and I will be okay even though it turns out that the very drug that concerned some doctors in the mid-west is the drug I’m taking. The cost is several thousand bucks per bag. That troubles me.
Besides not getting any green stamps I pondered the question of the price. I hear stories about the profit margin on prescription drugs and if true, wouldn’t it be prudent to make this drug available rather than turning patients away. This isn’t aspirin, this is a cancer treatment. Are we that hardcore capitalistic? Or, how about a little more socialism?
I suspect these patients are getting what they need, but I don’t know that. I prefer to think America is compassionate enough to do the job and shouts from the crowd to “Let ‘em die!” was just an individual’s point of view.
Just thinking again.
gl
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A while back the news on the sequester was about chemotherapy patients who were denied treatment because Medicare no longer covered the cost of the drugs. Of course, I talked to my Oncologist about this and I will be okay even though it turns out that the very drug that concerned some doctors in the mid-west is the drug I’m taking. The cost is several thousand bucks per bag. That troubles me.
Besides not getting any green stamps I pondered the question of the price. I hear stories about the profit margin on prescription drugs and if true, wouldn’t it be prudent to make this drug available rather than turning patients away. This isn’t aspirin, this is a cancer treatment. Are we that hardcore capitalistic? Or, how about a little more socialism?
I suspect these patients are getting what they need, but I don’t know that. I prefer to think America is compassionate enough to do the job and shouts from the crowd to “Let ‘em die!” was just an individual’s point of view.
Just thinking again.
gl
Question, is that drug available to NHS patients? They have a $35,000 a QALY per year limitation on treatment or something ridiculously low like that. Socialism can bite the health care dollar just as quickly as the greedy capitalists as well.
P.S. Some "teabaggers" shoot back Gerald.
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Question, is that drug available to NHS patients? They have a $35,000 a QALY per year limitation on treatment or something ridiculously low like that. Socialism can bite the health care dollar just as quickly as the greedy capitalists as well.
Where are you getting this information? This is really misleading. You cannot judge the NHS using American dollars and American healthcare costs! What the US prices at thousands of dollars costs less than a tenth of that here. In my opinion, based on my experience, much of the NHS cost-saving comes from not jumping to intervene and potentially buy themselves more problems than they solve. Two examples: they have much stricter criteria for prescribing antibiotics and they don't vaccinate for every little childhood illness.
Additionally, cancer drugs are treated differently, per Wikipedia and the NHS itself.
Wikipedia: However, in November 2008 Alan Johnson, the then Secretary of State, announced that for end-of-life cancer drugs the threshold could be increased above £30,000. [17]
The first drug to go through the new process was Lenalidomide. And its ICER was £43,800.
http://en.wikipedia.org/wiki/National_Institute_for_Health_and_Care_Excellence
(http://en.wikipedia.org/wiki/National_Institute_for_Health_and_Care_Excellence)
This article also goes on to explain that those who cannot get certain drugs paid for have two choices: pay out of pocket or use private insurance if they have it, exactly the same choices as the US.
Explanation of the NHS Cancer Drugs Fund: The CDF provides an additional £200m each year to enable patients to access drugs that are not routinely funded by the NHS.
http://www.england.nhs.uk/ourwork/cdf/ (http://www.england.nhs.uk/ourwork/cdf/)
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Cariad, nice information, but I didn't make a statement, I asked a question that is still relevant since as your sources state, many cancer drugs are not routinely funded and the special fund you are talking about ends in 2014. So, just a question is all I asked and it is still a good question if Gerald feels like discussing the specific drug. For a drug that Gerald states is several thousand dollars a bag, I suspect it is probably not available in the UK, but that cannot be answered without knowing exactly the medicine in question.
If Gerald does not wish to reveal that information, then the question will remain unanswered.
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Cariad, nice information, but I didn't make a statement,
These certainly look like statements to me:
They have a $35,000 a QALY per year limitation on treatment or something ridiculously low like that. Socialism can bite the health care dollar just as quickly as the greedy capitalists as well.
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Cariad, nice information, but I didn't make a statement,
These certainly look like statements to me:
They have a $35,000 a QALY per year limitation on treatment or something ridiculously low like that. Socialism can bite the health care dollar just as quickly as the greedy capitalists as well.
Cariad, interesting how you avoided the start of my post:
Question, is that drug available to NHS patients?
In any case, if Gerald wishes to answer so be it, otherwise my question remains and yes, it is still a question.
Have a great day. I doubt arguing over this innocuous and reasonable question will solve the worlds problems so probably not worth bantering about it any further unless Gerald wishes to chime in.
Take care,
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Cariad, interesting how you avoided the start of my post:
Question, is that drug available to NHS patients?
I didn't avoid it, I never said you didn't ask a question. You, however, directly claimed that you didn't make a statement. Clearly that is patently false. You made value-judgement laden statements about the NHS, which I said were misleading and I stand by that statement. That doesn't qualify as 'interesting' to me. I assumed that you didn't need to be talked through all of this. Guess I was wrong.
I doubt arguing over this innocuous and reasonable question will solve the worlds problems so probably not worth bantering about it any further unless Gerald wishes to chime in.
Take care,
Didn't realise your goal in these discussions was to solve the world's problems. It isn't my goal. My goal is to defend the healthcare system of my adopted country, my husband's homeland, and my children's citizenship against inaccurate or misleading statements. If it's not worth it to you to continue discussing it, then you know perfectly well you can just stop replying. Somehow I suspect you will continue, all the while saying what a waste of time it is for you to do so.
And I fail to see how something only being funded until 2014 in anyway refutes what I wrote. Like many government programs, they fund for set periods of time, then re-evaluate. I would wager that that program is here to stay.
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RETUXIN. My wife says that is the chemo drug I take.
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Rituximab is routinely available through the NHS.
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"So I just got the insurance info on the charges for my last Rituxan infusions. One was done at the onc office and the complete procedure (including the Rituxan, saline, Benedryl, administration, supplies) for 1 R-maintenance infusion was $5,998. The bill for the same exact procedure from the hospital was $19,162 (that is for 1 R-maintenance infusion, yes ONE.) My old onc, 1 year ago, charged $8,500."
The preceding was written by another Rituxan patient.
I have to admit that I haven't dug deeply into this Rituxan business because I tolerate this drug very well and it does the job. I also realize that this is a dialysis discussion group and I am not trying to intrude with my question on cancer treatment.
I here talk among the nurses that sounds like Rituxan is ordered just prior to treatment. And, what is NHS?
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NHS= National Health Service.
You know, the government healthcare program in the socialist hellscape Britain, where I now live.
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Here is the latest: new doctor says its pulmonary embolism in the lungs and legs. Everyone but me seems to be in a panic.
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Gerald, it is the National Health Service, the British health care system, alluded to because of references to social healthcare. Personally, I think the NHS does a pretty good job, and the transplant doctors def. seemed more knowledgeable than the charlatans I entrusted my care to over here.
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Bloody hell!
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Bloody hell!
I agree with Galvo, Gerald. I would be in a bit of a panic myself. I hope this is just a blip.
:cuddle;
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It is an interesting world I live in. Way back when a doctor first said I had cancer, he was physically shaken. My only reaction was to ask, “What do I do next?”
The cancer conference gets repeated three more times. One doctor made a long speech filled with what I call, “buffer comments” before actually telling me I had the cancer crud. I should have given him two aspirins and told him to call first thing in the morning.
I am aware of what pulmonary embolism is and I am also aware of its sudden death characteristic. Even though the doctor told me over the phone late Friday, I could feel his anxiety. I am his newest patient and he is just now setting up his practice and I may be the first person he has told what amounts to “bad luck”. My reaction held no concern except for the revelation that I will need two shots per day, and since we live so far out of town, my wife will administer the injection. Now, that is scary. The survival rate for my class of PE is 63%.
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It is an interesting world I live in. Way back when a doctor first said I had cancer, he was physically shaken. My only reaction was to ask, “What do I do next?”
The cancer conference gets repeated three more times. One doctor made a long speech filled with what I call, “buffer comments” before actually telling me I had the cancer crud. I should have given him two aspirins and told him to call first thing in the morning.
I am aware of what pulmonary embolism is and I am also aware of its sudden death characteristic. Even though the doctor told me over the phone late Friday, I could feel his anxiety. I am his newest patient and he is just now setting up his practice and I may be the first person he has told what amounts to “bad luck”. My reaction held no concern except for the revelation that I will need two shots per day, and since we live so far out of town, my wife will administer the injection. Now, that is scary. The survival rate for my class of PE is 63%.
The Lovenox works well for this Gerald, but you will get some nice bruising in your abdomen from this. Are they putting you on coumadin as well? That is the usual practice. And yes, you don't want to mess with blood clots, I understand well the anxiety on your doctor's part. Fortunately, you are in the "lucky" group of folks with PE that actually make it to the hospital and in addition is diagnosed properly.
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I can only say it makes me feel not so good... I want to respond better, dont want to 'not' respond, but dont know how to respond another way. You do better with these things GL than the rest of us. Heck, i dont like how it makes 'me' feel to hear this, but have faith that You have beat the rest of the crud you've been delt, so by rights, you will beat this as well. DArn you Gerald..
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I came to “I Hate Dialysis” thinking that I had enough experience with dialysis and other “heavy” health problems, to make fun of it all, get away with ignoring it, and brighten a few faces in the process by doing my ridiculous funny stuff. I always liked approval by smile because it helped me, and being a Liberal, it helped others too. This time I can use a little support as I fight off a minor case of anxiety.
This time the doctor’s call penetrated my facade.
The doctor I just dumped misdiagnosed what turned out to be cancer after he called it constipation. Not even close. After ten months of coughing, spitting up and syncope (I just fainted ten minutes ago), and countless pills prescribed under the advice of “try this and see if it works”, I found a new doctor fresh from medical school who said from the beginning – Pulmonary Embolism. From somewhere deep inside I was getting ready to give this doctor a gold star for getting it right. Yes, my intuitive-self knew he was right on the money.
The odds are two to one in my favor, and having survived ten months of this, I can beat this too - - okay, that’s what I’m telling myself.
gl
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Hang in there, Gerald! You sound as though you have the constitution of an ox - may it stay that way. :grouphug;
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I found a new doctor fresh from medical school who said from the beginning – Pulmonary Embolism.
So what's his plan? A bit of heparin or warfarin?
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Gerald , I just wanted you to know I am sending you good wishes and to let you know you always provide me with much needed chuckles and smiles - so your plan is working ! Laurie has just finished six months treatment with coudamin for PE . When receiving news that leaves the doc visually shaken our plan is put the information in the " I will think about it later " basket and go about business as usual .
I trust your humour and courage will see you through this latest disaster .
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Hang in there. The odds are never really the odds -- just being willing to face them changes them (for the better!)
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Warfarin is what I'm getting.
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our plan is put the information in the " I will think about it later " basket and go about business as usual .
That's exactly what Gregory does also. I think sometimes he overuses this tactic really, but it does get him through things like transplant failure.
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Support coming your way from here in Tennessee. :cuddle; Have had you on my mind today as I have sat in my hyperbaric chamber getting super oxygenized....
Take care, Gerald!
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...I always liked approval by smile because it helped me, and being a Liberal, it helped others too...
The odds are two to one in my favor, and having survived ten months of this, I can beat this too - - okay, that’s what I’m telling myself.
Gerald, forget about the numbers, they are history. You beating this thing will change those numbers - an even greater percentage surviving. Medicine moves forward and outcomes improve.
You already have a leg up on survival - a diagnosis, a good doctor fresh out of medical school who will be up on the latest innovations, and you yourself - informed and ready to fight.
Here are some smiles for you: :) :2thumbsup; :clap;
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Wow! If your feet were sticking out I should have been there to mercilessly tickle your tootsies. Then, after finishing with that, I coulda' played "this little piggy went to market . . . . "
gl
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A small story I posted on another forum:
How do you shop in a town that has no grocery stores? If you live in Yakutat, Alaska where there are no connecting road to any other community and no store larger than a 7/11, you have a problem.
Here is what we did: We called up Fred Meyer (by old-fashioned telephone) grocery store in Juneau, about 500 miles away, and asked them that very question. By mail, they sent us a catalogue of everything in their store which included hardware, pistols, rifle and ammo. We called back and placed our order, got a price/total and sent them a check. Two days later our groceries arrived on Alaska Airlines.
That worked so well that we called up Sears and bought a chest freezer in the very same manner. Then we located a butcher shop near the Juneau airport and ordered $1,000 of cut to specs beef and wrapped for freezing, all by Alaska Airlines. All of the stores paid the freight.
I didn't have to deal with a checker. That was in 1989.
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A small story I posted on another forum:
How do you shop in a town that has no grocery stores? If you live in Yakutat, Alaska where there are no connecting road to any other community and no store larger than a 7/11, you have a problem.
Here is what we did: We called up Fred Meyer (by old-fashioned telephone) grocery store in Juneau, about 500 miles away, and asked them that very question. By mail, they sent us a catalogue of everything in their store which included hardware, pistols, rifle and ammo. We called back and placed our order, got a price/total and sent them a check. Two days later our groceries arrived on Alaska Airlines.
That worked so well that we called up Sears and bought a chest freezer in the very same manner. Then we located a butcher shop near the Juneau airport and ordered $1,000 of cut to specs beef and wrapped for freezing, all by Alaska Airlines. All of the stores paid the freight.
I didn't have to deal with a checker. That was in 1989.
Gerald, we lived up in Nome from 1966-1968 and got groceries and supplies three times a year shipped by boat. I remember well our Sears and Montgomery Ward catalogs. They worked just fine with no internet at all. In fact, Nome only had two small towns we could drive to and no TV at all in those days. When I was 10 years old, I could walk into a store and buy pistol ammo just with the money in hand. Times have changed.
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Monday. Today wasn’t just any old Monday, which is bad enough without embellishment, but today was “Triple-threat Monday”. The past week wasn’t going to get any praise either, having learned that I have some health difficulty called Pulmonary Embolism. Health difficulty are my words; which means, some parts of my lungs aren’t doing the job. What could be worse than that - - a triple-threat Monday would be worse.
And that triple threat is:
1. Ultra-sound of the legs. Here is how this chip falls; a pulmonary embolism is a blood clot, you know, like dried up blood. When a blood clot is in a vein the normal blood flow is interrupted. Ehh, so what? These rascally blood clots usually get their start in the legs, although it can come from anywhere. The clot breaks off and floats to the lungs or the heart and there it stops up the works. This could be a by-product of surgery, stubbing your toe during your usual wild domestic Thursday night orgy, or something like chronic bronchitis. Yep, the legs. That is the usual case. Your doctor wants to find where it came from so he can deal with it directly. If the clot has already broken off, it is properly called a Pulmonary Embolism; before it deposits itself in other parts of the body, it is a thrombosis something or other. Well, the news is, they didn’t find anything in my legs, which means, the original clot is somewhere else and is much more difficult to locate. Uh oh!
2. Ears, the ones on the side of my head. Got a hearing test today, the one with the beeps, tones and bells. I had one about fifteen years ago and back then, they said I had only half of normal hearing. The Doctor said 60% today. “Alright,” I said with a certain amount of jocularity, “my hearing improved.” Yep, my doctor knows a wise-ass when he sees one. After the appropriate eye-roll, he says, “Your pointy little ears are 60% deaf.” Then he tells me all about his recent vacation in Wisconsin and how great the fishing was.
3. Of course, this doctor didn’t stop there, he is the guy who looks up my nose into my sinuses and says, “Boy, you have a bad case of the snots.” Ya see, it was last week when he took a CT scan of my head to see if he could find anything. Some would say there isn’t anything there, but this Doctor, a guy who goes all the way to Wisconsin to catch a fish on a freezing day, wants proof. His CT pictures are the proof he is looking for, it shows trouble. Sinusitis, he says gleefully, tossing out these medical terms right any left. He wants to operate. Tears filled my eyes. I asked for a Kleenex. I blew my nose in it – but it failed to clear out those sinuses.
By golly, the Sun is still up and it is still Monday, and I have wasted three downs – I’ve gotta punt. That means taking the time to think about all this. Yep, I’m thinking.
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Bummer of a day.
Don't know about the others, but sinusitis is an old nemesis. Doctor's comment after the CT scan, "Well ... your sinuses will never be normal ...."
Their rule of thumb (or maybe it was just based on my particular, abnormal sinuses) was that so long as I didn't have four or more sinus infections requiring antibiotics in a year, then it probably wasn't worth operating. Since then (20 years or so) it's only been one or two a year, so I've kept my abnormal sinuses just the way they are. A combination of flonase and sudafed has worked most of the time. The infections did get markedly less frequent after my daughter with the cats got her own place. And I haven't had one since my kidneys started acting up back in November. (Good thing, since I don't think I'm supposed to take sudafed anymore.)
I'm kind of surprised the transplant team hasn't told me I need one (or more) tests to get that part of my head checked out. (Aargh, I suppose I should bring it to their attention and make sure they didn't overlook it in the medical history. :( )
Hope everything works out quickly and well for you. And the rest of the week is bound to be better than Monday!
cheers,
skg
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Gerald Just wondering, How do you cope with it all? I going to a dermatologist Friday. I'm trying not to predict what the outcome will be, but can't help thinking the worst. (skin cancer) If that turns out to be the case, I have almost decided to "QUIT" To continue with dialysis until the cancer gets too bad and then quit dialysis and let nature take over. How do you do it? Grumpy
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Grumpy-1;
[How do I cope?] I don’t know how to answer that one.
I have had cancer four times, five if you want to count a minor skin problem, and I have lost count on the number of times I’ve been put under for surgery – one of those was a radical prostatectomy lasting four and a half hours and four days in the hospital and it ruined everything. I had an eye surgery for cataracts and they didn’t put me under enough and, yes, I felt the cut on my eyeball and I’m told I verbally expressed myself, grabbed the surgeons arm and I don’t remember anything after that. It was all over in minutes. The eye doctor says she’ll never forget that experience but will not repeat what I said. Inquiring minds want to know!
By far the worst medical experience I’ve had was dialysis. The process eats away at your defenses. If you happen to be the type of person who is slow to recover, then your one day off between dialysis sessions is not enough, under ordinary circumstances. This isn’t the slippery slope we hear about, it is, instead, it is a relentless repetition of a process that you know with absolute certainty, will not cure you of your kidney ailment. You’re the half-dead fish on the stringer. That message was brought home one day when my dialysis nurse farted then walked away. I couldn’t walk away. I was tied to a machine, stuck in a chair and I couldn’t hold my breath long enough to avoid the flavor of my nurse’s internal colon atmosphere. There I was, a prisoner suffering a torture worse than waterboarding. I’d been fartorized. Listen carefully, I just revealed how I cope.
Look for the irony, find the humor, then find a way to express it all.
Your reaction to what I write is saving me. Your nonmedical reaction helps me minimize the forthcoming trauma. And isn’t that what this forum is all about? Take a few moments and think about it; this is a mind trick, a way of taking your conscious thoughts off your problems even if it is only slightly off-point from the actual problem.
If they have you stretched out on a gurney headed into surgery, sing, or tell an off-color joke - - anything that takes your mind off anything serious. Invent something – (MooseMom is my mother) // cariad is an international drug dealer // HemoDoc is an NSA operative and his name is a code // and Michele Bachmann wants your body but can’t find you. Do you want me to set you up?)
Go ahead, ask me a question, ask anything. Without a doubt I won’t know the answer.
gl
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Love you, Gerald!
Lots of folks need a dose of your attitude for a better life! :2thumbsup;
People keep asking me how I stay positive.... I dunno.....it beats being negative! :clap;
Chin up and keep them wondering!
Aleta
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'a relentless repetition of a process that you know with absolute certainty, will not cure you of your kidney ailment.' Gerald that is the most wonderfully accurate description of this barbaric process we undergo in order to continue our miserable existence!
You are not only a gentleman, Sir, you are a wordsmith.
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I'm being spoiled here. All of you are much too nice to me. Uh . . . don't stop!
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Thanks Gerald. I too enjoy your thoughts and ramblings. Yes a positive attitude helps, and finding humor in things works too. I also find that helping others helps me. It takes my mind and thoughts away from me (you know the self pity party) and focus on someone else. Thanks again for the the thoughts, we'll see what the Friday Doctors visit brings. Grumpy
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oo
o 0
o g l o
o o
oo
ok,, thats a big personal hug around ya gl.... And actually, that took all my extra brain for the day so hope ya really feel it :)
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My wife is into style, the latest, although her preferences do no extend into clothes. I can be thankful for that much. She likes “gizmos”. A few weeks before Samsung came out with their fourth generation cell-phone or “pocket computer that can control the World”, she bought me a Samsung #3 cell-phone.
Normally I do not use a telephone, since I cannot hear very well. I certainly don’t call anyone. Until lately!! Yes, I have actually picked up that cell-phone and dialed a number because - - - - - it is a hell of a lot easier to fumble through the dialing pattern than it is to walk all the way to the far end of the house. Uh huh! That’s correct, my cell-phone has become an inter-com system. Explanation? Okay!
The house is a hundred feet long and I converted the garage area into a rather sophisticated quilting room – where my true love spends endless hours. The computer I sit at is an old fashioned PC Dell that I took to the computer hot-rod shop where I put on new rims and tires, had a precision valve job with two large monitors and chrome exhaust pipes running up the bookcase where this system resides. I sit there a lot.
I might have made six or seven inter-com calls during the last six months.
Consider the plight of the NSA Analyst assigned to the task of monitoring my cell-phone; He/she had to get every word exactly correct. If my NSA analyst is a she, there is most likely a lawsuit in the works to put me away for sexual deviancy, at the very least there is concern at the NSA about me and throat cancer. That leaves five other unchallenged phone calls. Hmmmmm!
The Founding Fathers most definitely had me in mind when they wrote the 4th and 1st Amendments. It wasn’t just concern for my right to privacy, rather it was worry about my potential for corrupting the world. Already we see that the Secret Service cannot resist a good looking Ho. They talked with Pinch and he made the arrangements for the big “get-together”. That’s his job.
Not enough for ya? Just check out your history book; Tapping my phone was all under control until someone “leaked” my calls to Bill Clinton, and you saw what happened there. Right in the middle of her blue dress. I own the patent for the cigar trick.
And there is the problem; those NSA geeks will steal your ideas and will get rich, and no one will know where the idea came from. Hey, it can happen! So, I’m opposed to phone-tapping.
gl
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If they have you stretched out on a gurney headed into surgery, sing, or tell an off-color joke - - anything that takes your mind off anything serious. Invent something – (MooseMom is my mother) // cariad is an international drug dealer // HemoDoc is an NSA operative and his name is a code // and Michele Bachmann wants your body but can’t find you. Do you want me to set you up?)
(*anxious giggle*)
Yes, what an imagination you have, Gerald! International drug dealer, me? It's funny because it's so preposterous. (*inappropriately loud laugh*) Also, my kids are certainly not highly trained drug mules whom I sent to Spanish Immersion school so they could blend in seamlessly at the Colombian airport, nor is my husband learning karate so he can earn the respect of the Yakuza. (*wipes brow*) Finally, references to "organic produce" or "herbal blends" are not code for anything at all.
Now that that's settled, let's never bring the subject up again. :shy;
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Gerald using your cell phone as an intercom is far superior to the wireless door bell system we have in place in this house . However , I will not suggest using your idea to Laurie as I would be very afraid of the possible consequences if ASIO
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were to tap our phone line !!!
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MRI brain scan tomorrow AM. Looking for brain damage from continuous syncope (fainting) over the past year.
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I doubt they will release the results to you Gerald, but it sounds like they will go straight to the NSA
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Good thing you say you don't hear well. Those MRIs are noisy.....and I think that is where they get the sound effects for many scifi movies.
:grouphug; :grouphug;
Aleta
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At first I recognized that I hadn't been here in some weeks, so I wasn't surprised that I had to sign in anew. So, I did. The website computer tells me that I'm not known around these parts. I do it again, this time carefully typing in each letter and number. Nothin' A tiny window tells me to poke at a certain link for a new password. What happened to the old password? I do it again. If did it this many times with my old girlfriend she would have declared me Superman.
I try the new password. The website doesn't like it, it seems there must be a mix of upper and lower case letters and some numbers. New password and I am finally in.
Hmmmmmm! I forgot what I was going to post.
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Still in fine form, Gerald!
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I signed in, registered my quip and the next day the website wouldn’t let me in. Try as I might, I was on the outs. It was either: (1) my humor had gone stale; (2) I had bad breath; (3) the mechanics at the website were on strike; (4) HemoDoc and MooseMom got married.
Then, as if the sky opened up and the Sun sent rays of enlightenment through the dark dense clouds, I remembered my password. Yes, I am becoming an old fart. So, here I am with nothing to say.
Boogie!
gl
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If you haven't seen the old movie "Hysteria", watch it if you see it on your movie menu.
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(4) was supposed to be a secret. The NSA must be on the prowl!
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Once again the website bumped me out. So, I did my duty and made four attempts before I persuaded the computer to allow my presence. Yep, the NSA reported that event (4) to me. Manning got 35 years for blabbing that one to the World.
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Gerald slept here. Home base for me. I couldn't help noticing that no one dusted the furniture since I've been gone. Where have I been? I went to a mechanic and had him jack up my kidneys and drive a new body under those pee-makers. It has been a rough road during my time away, as usual I made it back here.
Hey. Is anybody out there?
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Check your email - I may have solved your problem logging in.
okarol/admin
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I am thoroughly confused. So - - - I went into my "profile" and set things up all over again. I tested the password and it works. So, here I am.
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Welcome back, Gerald. It's been very quiet without you. :flower;
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Welcome back old friend :laugh:, how're you keeping?
Love, Cas
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I went to a mechanic and had him jack up my kidneys and drive a new body under those pee-makers. It has been a rough road during my time away, as usual I made it back here.
Hey. Is anybody out there?
LOL, I don't know what this means, but glad to see you back!
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Gerald! SO glad to see you! :2thumbsup;
Aleta
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Good to see you back guy.
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Yo! Gerald!!
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I hope I can brighten everyone's life. Having been there and done that, I have some insight into the plight of those attached to the machine. I escaped and most cannot. Good to be back.
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I am thoroughly confused. So - - - I went into my "profile" and set things up all over again. I tested the password and it works. So, here I am.
Yes, but your old name should also be working - did you get my email with the new password? Or you can just keep this one.
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Whatever works!! Glad to see you back Gerald.
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Dear Boss-lady:
I assume you read all this stuff, so here goes; A member sent me a personal message which I read. I tried to respond but the system requires some extraordinary information before my letter is permitted - - how many freckles are on my nose, my great-grandmothers maiden name, and then as if I were young and tough, it asked me to read some sort of hieroglyphic that I couldn't sort out with a magnifying glass, a butter knife and a pair of tweezers. This is more security than I saw back in my NSA days. I promise I won't steal anything and I won't propose marriage to more than several of the beautiful young ladies on this forum. Anyone under 75 is young.
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I HATE those security words. I can't figure them out no way no how. Very frustrating when I'm just trying to email an article or something.
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And people 75 and over are old???? Boy, did you stick your foot in it this time Gerald. :police:
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You bested me. I give up. I surrender. "Uncle".
I'll have to think of another way to do my mischief.
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Hahahaha. Just stay as you are, and keep us laughing. I was only jokin with you. Besides, I wont be 75 until, um, oh, 2 months from now!!!
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Hahahaha. Just stay as you are, and keep us laughing. I was only jokin with you. Besides, I wont be 75 until, um, oh, 2 months from now!!!
I've just found out that I'm 100! ;D Boy, does time fly! LOL!
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Still here. Kidneys still at 35-40%. Developed COPD with scarred lung and a pulmonary embolism. Not doing any weight training, might pass out in the middle of a bench press. 75.
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Glad to hear from you, Gerald. :flower;
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Still here. Kidneys still at 35-40%. Developed COPD with scarred lung and a pulmonary embolism. Not doing any weight training, might pass out in the middle of a bench press. 75.
Sorry to hear about the COPD, but the kidneys seem to be holding steady.
Don't be such a stranger, Gerald! :beer1;
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G'day, old boy!
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:flower; Welcome Back Gerald. You are definitely one of THE MOST interesting people in this forum. Please don't leave us, you are very uplifting.
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Come next Tuesday some gullible nurse is going to search the forest in the mountains looking for our humble abode. He/she is going to poke something in the tender parts of my abdomen so I may sit for two hours while I absorb liquid goodies. This serves as treatment for immunoglobulin defiency. This sounds a heck of a lot like dialysis with a tummy fistula.
Two hours! Chemo took six hours. Dialysis took a few hours and they liked me so much I had to do it three times each week. I should be used to this business of being tied down by tubes and drip-bags. The best illustration of how I feel about this is during dialysis when the nurse farted and I couldn’t get away. Judging by the volume and the odor, the culprit must have been bean burritos. Perhaps I just don’t favor being a prisoner.
And so it goes. Reading is out, macular degeneration is bad enough now that I can’t read a book, typing requires an extraordinary amount of editing, and the monster sized TV is starting to look like a 1950s TV on rabbit ears. Then there is hearing. Went to two doctors about my fading hearing and both said, “You can’t hear.” Yep, that’s why they pay them the big bucks. Wife is looking into hearing aids.
So, my shrink say write a book. I suspect something here, perhaps there is a lack of coordination among my medical professionals. Really! Medical professionals. The term reminds me of the time I woke up during eye surgery for cataracts.
Maybe I will start a new website. I could call it “I Hate Secondary Immunodeficiency Therapy”. Kind of a catchy title, don’t you think?
Kootie J
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Getting old(er) is a bitch, but it sure beats the alternative! :cuddle;
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I'm not so sure about that!
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It depends on what you believe your alternative is....
:flower;
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Look at all the new faces! It looks like a new generation has joined up. For those who ask what this is all about; too bad, I'm not going to explain. Awright, a small update. I am the resident zombie. The AMA has tried to kill me a dozen times and it remains debatable about their success. Worse, I survived dialysis.
Soap Opera: As the pervious episode closed, the Hunter-Killer nurse was tromping through the forest looking for me. Damned if she didn't find me. There I was, still in my jammies lounging on my "kick-your-feet-out" chair. The front door shuddered, the doorbell range and Auggie the Chihuahua guard dog, prepared for an attack. Arf! Alas, Auggie barked but his tail wagged. I'm gonna fire that dog one of these days.
It seems this nurse wants to stick no less than four needles in my butt. Second choice was in love handles. First of all this infusion of Immunogloblin takes two hours and I don't want some strange woman gazing at my butt for two hours with four needles plus four tubes hanging out where the sun shines, well, not when my wife is there. Second, my love handles represent a substantial investment. It cost big bucks to get them love handles up to proper size. So, being master of my world I said, "Stick 'em in my arm. Two here, two over there." Na, na, na, whine, groan and there isn't enough fat." Having been a longtime powerlifter, I checked my arm; there was a drooping tricept from ten years of doing nothing. "Stick it there". She likes my arms, that was nice. I flexed my arms for the remainder of the day.
I survived but she taught my wife how to stick those needles and all of whatever else they do. Nurse came here for three Mondays (I get this infusion once per week) indefinitely. They said the same thing about renal failure (two weeks to live) and dialysis (three times per week for life) but I beat both of them. I beat my fourth major cancer and you people are stuck with me. Birthday next month.
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Look at all the new faces! It looks like a new generation has joined up. For those who ask what this is all about; too bad, I'm not going to explain. Awright, a small update. I am the resident zombie. The AMA has tried to kill me a dozen times and it remains debatable about their success. Worse, I survived dialysis.
Soap Opera: As the pervious episode closed, the Hunter-Killer nurse was tromping through the forest looking for me. Damned if she didn't find me. There I was, still in my jammies lounging on my "kick-your-feet-out" chair. The front door shuddered, the doorbell range and Auggie the Chihuahua guard dog, prepared for an attack. Arf! Alas, Auggie barked but his tail wagged. I'm gonna fire that dog one of these days.
It seems this nurse wants to stick no less than four needles in my butt. Second choice was in love handles. First of all this infusion of Immunogloblin takes two hours and I don't want some strange woman gazing at my butt for two hours with four needles plus four tubes hanging out where the sun shines, well, not when my wife is there. Second, my love handles represent a substantial investment. It cost big bucks to get them love handles up to proper size. So, being master of my world I said, "Stick 'em in my arm. Two here, two over there." Na, na, na, whine, groan and there isn't enough fat." Having been a longtime powerlifter, I checked my arm; there was a drooping tricept from ten years of doing nothing. "Stick it there". She likes my arms, that was nice. I flexed my arms for the remainder of the day.
I survived but she taught my wife how to stick those needles and all of whatever else they do. Nurse came here for three Mondays (I get this infusion once per week) indefinitely. They said the same thing about renal failure (two weeks to live) and dialysis (three times per week for life) but I beat both of them. I beat my fourth major cancer and you people are stuck with me. Birthday next month.
You can take a lick'n and keep on tick'n!
:beer1;
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Not enough mischief around here. How can I tell? I was just sitting here pressing the "go up" button followed by the "go down" button. It wasn't exciting.
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Great to hear from you, Gerald, and to see you're still having fun. A very Happy Birthday!
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Not enough mischief around here. How can I tell? I was just sitting here pressing the "go up" button followed by the "go down" button. It wasn't exciting.
:rofl;
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Hello all:
It has been a while since my last post. As I gaze around the room I see an entirely new generation of potential victims for my satirical appetite. Oh yes, I was a dialysis impatient patient for eight months. Then I went on strike. No longer do I have to put up with nurses who fart and walk away, or do water calculations and argue with the nurse about it, or watch right-wing TV on a postage stamp size monitor, and I do not have to beg to be unhooked so I can stroll to the restroom to take a whiz. Now I have kidneys that function at 35% of normal. I pour water in and water comes out, what more can I ask.
What have I been doing? Chasing women, trying to get off Facebook, chasing women, involved in politics, and I'm trying to grow a few veggies during this drought thing. On the other had I still get immunoglobulin infusions once a week for a suppressed immune system (caused by chemo). Needle Hell - four of 'em. Then my doctor has me lifting weights again. I'm 76 years old. And they put me on a diet - does anyone have a donut? Send it UPS to me.
Okay, I sold all my Harleys because my eyesight has almost disappeared. Macular Disentigration. (sp). Hearing is gone and hearing aids made me cough. But I am here ladies. So, what do we have to drink?
Kootie J
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Hello all:
It has been a while since my last post. As I gaze around the room I see an entirely new generation of potential victims for my satirical appetite. Oh yes, I was a dialysis impatient patient for eight months. Then I went on strike. No longer do I have to put up with nurses who fart and walk away, or do water calculations and argue with the nurse about it, or watch right-wing TV on a postage stamp size monitor, and I do not have to beg to be unhooked so I can stroll to the restroom to take a whiz. Now I have kidneys that function at 35% of normal. I pour water in and water comes out, what more can I ask.
What have I been doing? Chasing women, trying to get off Facebook, chasing women, involved in politics, and I'm trying to grow a few veggies during this drought thing. On the other had I still get immunoglobulin infusions once a week for a suppressed immune system (caused by chemo). Needle Hell - four of 'em. Then my doctor has me lifting weights again. I'm 76 years old. And they put me on a diet - does anyone have a donut? Send it UPS to me.
Okay, I sold all my Harleys because my eyesight has almost disappeared. Macular Disentigration. (sp). Hearing is gone and hearing aids made me cough. But I am here ladies. So, what do we have to drink?
Kootie J
Hope none of your Harleys ended up parked in Waco. Sorry about the eyesight but some of the ugliness going on these days would make you want to shield them anyway. Hearing doesn't matter, so long as you are in good company and know sign language, such as come here, take this order to the cook or who otherwise doesn't care if you're listening or not. As for adult beverages, pull up a stool and order yourself one. And bring your own bag of doughnuts, nobody will mind.
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Hello Gerald,
... so good to see you again and very interesting to read about your latest excursions...
Sorry about your new diet and I am also sorry that can't send you a donut right away, because our shops are not open yet ...
You are very lucky that your kidney function has increased and 35% kidney function
is what most of us here can only dream about... Please tell us: how did you do it?
Sorry about those Harleys, but you are still young and something equally exciting may come along...
Kind regards and good luck wishes from Kristina. :grouphug;
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Hi, Gerald! :2thumbsup; :cuddle;
So glad to see that you are still putting up a fuss and keeping the ladies terrorized! :guitar:
I can't have donuts either, so let's commiserate together! :banghead;
Keep up the fight. Now that I'm retired, I have gotten more involved in politics, too. Gotta put up the fight somehow!
Love to you,
Aleta
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How did I beat dialysis?
I don't know. A few years back my upper abdomen suddenly grew large. My GP told me I was constipated but it turns out it was three cancer tumors that decided to grow large. Got very tired, went into hallucinations and they wheeled me into the hospital and was immediately diagnosed as having experienced renal failure. Cancer and renal failure all at once, my lucky day. Still hallucinating, they wheeled me into surgery and pounded some sort of catheter into my chest via the collar bone. Immediately was placed on dialysis. I woke up and saw some gruffy looking fellow reading a women's magazine. A machine was grinding away next to the bed and to my horror I was connected to this monster machine that sounded like a coffee grinder. At this point I didn't know what my medical problems were. Mr. scruffy told me.
Later that day they started chemo. It was some sort of "anti-body" juice. My Oncologist said it would "knock down those tumors" quickly but I would remain on chemo for about two or three years. I stayed in the hospital for a week then I got up and left. The hospital didn't like that and they sent a cop to my home to talk me back to the hospital which is thirty miles away (I live in the forested mountains). Chemo lasted two years but it destroyed my immune system so I get these immunoglobulin infusions every Monday. I stay away from people because they cough a lot.
Those hallucinations were a whole story by themselves. If interested I'll tell you.
I spend my time on the computer now even though I have trouble seeing the keyboard and reading those two over-sized monitors, and I am all about politics since politics was a big part of my career. (Retired City Manager) And I am seriously concerned about the these United States and its future.
After eight months of dialysis and arguing about how much water to take out, I demanded a test to see if I could exit that place. I passed with 20% kidney function. In the next several months those kidneys improved to about 35-40%.
And here we are.
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Good to see you're a bad boy as always. Shouldn't all that chasing women keep some of the weight off? I'll send you TastyKakes. I wonder how they taste with Long Island Iced Tea.
(I still get sweets but no alcohol.)
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How did I beat dialysis?
I don't know. A few years back my upper abdomen suddenly grew large. My GP told me I was constipated but it turns out it was three cancer tumors that decided to grow large. Got very tired, went into hallucinations and they wheeled me into the hospital and was immediately diagnosed as having experienced renal failure. Cancer and renal failure all at once, my lucky day. Still hallucinating, they wheeled me into surgery and pounded some sort of catheter into my chest via the collar bone. Immediately was placed on dialysis. I woke up and saw some gruffy looking fellow reading a women's magazine. A machine was grinding away next to the bed and to my horror I was connected to this monster machine that sounded like a coffee grinder. At this point I didn't know what my medical problems were. Mr. scruffy told me.
Later that day they started chemo. It was some sort of "anti-body" juice. My Oncologist said it would "knock down those tumors" quickly but I would remain on chemo for about two or three years. I stayed in the hospital for a week then I got up and left. The hospital didn't like that and they sent a cop to my home to talk me back to the hospital which is thirty miles away (I live in the forested mountains). Chemo lasted two years but it destroyed my immune system so I get these immunoglobulin infusions every Monday. I stay away from people because they cough a lot.
Those hallucinations were a whole story by themselves. If interested I'll tell you.
I spend my time on the computer now even though I have trouble seeing the keyboard and reading those two over-sized monitors, and I am all about politics since politics was a big part of my career. (Retired City Manager) And I am seriously concerned about the these United States and its future.
After eight months of dialysis and arguing about how much water to take out, I demanded a test to see if I could exit that place. I passed with 20% kidney function. In the next several months those kidneys improved to about 35-40%.
And here we are.
Amazing! :)
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Nice to hear you are alive and well ( or somewhat anyways ) Gerald, and nice that you are back and into POLITICS!!!!! Now we dont have to worry about arguing religion, so lets hear your output in regard to well, "THE DONALD". I can hardly wait!!!
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Okay, here I am.
Wife took me to COSTCO yesterday. It seems she thinks I don't get out often enough. Egads, I actually saw people, hundreds of them. They infested the store, drive cars but worst of all, the lady shoppers with grocery carts push those things like a Kamakazi pilot. While there I had a revelation about feeding the hungry of the World; buy them a COSTCO membership and have them check the free food samples they have.
Today I am tired from all that exercise. Gotta rest. Wife bought a pizza there. Had some for lunch. Can't believe I ate the damn thing. Been on a diet; lost fifty pounds and the doctor still isn't happy. I think he served time in the German military during WWII. No more pizza, twas yucky.
Sorry Folks, but I am about to offend some people including the word cops who say I can't write about politics in the "General" category. Then again, I always broke the rules including carrying a protest sign back in my good old college days. Got elected to Stud body Prez for that.
Donald Trump because you asked.
As a student of political science and Group Psychology I can say that the speech patterns Trump follows is the exact same as Hitler. What Trump offers, now that his tax plan is out there for all to see, is the type of fascism known as "Corporatism" same as Mussolini - although we are experiencing Corporatism now (when government and corporations make public policy). In addition, Mr. Trump says what sounds good but without specifics. That gives him flexibility, if he is elected, to change his promise. That makes him dangerous since no one really knows what he truly means - except for his tax idea that benefits cororate America and himself. He is a self-described egoist and no doubt that penetrates every idea he has. If you are listening to him you need to know that.
If any one is still reading this, I have birthday #77 coming up soon, am waiting for some rain (this is California, ya know) and I noticed that the east coast is still hogging all of the rain. SHare, why don't ya!
Still getting immunoglobulin every Monday, four blunt needles and tubes in the arm. I should smile but I don't. Can barely see the minotor fonts, can't read anything on paper, can't write and my hearing went to hell (may be service related). By the way, the font on this message is kind of small so forgive the typos or else I will haunt you with terrible puns for the remainder of your days.
Like: I saw a car that crashed into a tree and realized that Mercedes Bends.
Okay, I give up.
By the way, one last political poke: The best person for the President's job is not running, Elizabeth Warren. You are free to shoot at me.
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I won't shoot at you, because I like what you are saying. :2thumbsup;
Can you imagine if Bernie Sanders chose Elizabeth Warren as his running mate???? Woo hoo. That would be a pair. One can hope.
Fifty pounds of weight loss! Good for you! I "only" lost 40, and I would like to lose 5 more, but that last 5 is just not budging. :thumbdown;
Good to hear fro you, as always.
And happy, happy birthday to a 77 years YOUNG person.
:cuddle;
Aleta
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Willow-Baby:
I am saddened that Elizabeth Warren is not running. She is clearly Presidential material, has the correct answers on economic issues and is not afraid to say what needs to be said along with detailed solutions.
Bernie suits me but he has an ideology and ideology stifles creativity. The next President will face a Republican House again because gerrymandering almost guarantees a GOP House. Still, it is a long way off and things are happening; Hillary is losing ground, Biden has not said what he will do and on the GOP side we are all watching Trump-dee-do-da.
If you are interested, I am a Progressive. I believe government must keep improving both itself and the Nation for which it is responsible. People first. A healthy America. No wars. Yep, I carried a sign back in the day. I don't remember what it said. Must have been something like "Yankee Go Home" during the war or "Nixon is a Wuss."
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Since retiring, I've gotten more active in politics. Who knows, maybe I can make a difference in this very, very red state. Stranger things have happened. :rofl;
I greatly admire Warren. I could really get behind her, but that isn't going to happen this go-around.
Keep smiling, Gerald. I always love to hear from you!
Aleta