I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: MooseMom on October 03, 2010, 04:15:06 PM
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We pre-dialysis patients are all too familiar with the anxiety that comes with awaiting lab results and going for our regular neph appointments, so I though it might be nice to have a thread where we can all come and discuss these things. I know that woodsman has an appt this week and is feeling the strain. Anyone else have an upcoming appt or have just had one?
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we will be seeing my mom's neph tomorrow, the thought of her undergoing dialysis scares and saddens me. im sure she's also feeling that way...it's like a damocles' sword. :(
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we will be seeing my mom's neph tomorrow, the thought of her undergoing dialysis scares and saddens me. im sure she's also feeling that way...it's like a damocles' sword. :(
I've used the Damocles' sword analogy many times. So, how did the appt go?
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Most of the time I would rather slit my wrists than go to see my neph. It is so scary that my blood pressure goes up 15 to 20 points when I go in. I will never feel comfortable in that office. Seeing my regular dr, my bp stays normal, never hgiher than 130. Dont know why this happens, maybe because I want and dont want to know my GFR.
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Most of the time I would rather slit my wrists than go to see my neph. It is so scary that my blood pressure goes up 15 to 20 points when I go in. I will never feel comfortable in that office. Seeing my regular dr, my bp stays normal, never hgiher than 130. Dont know why this happens, maybe because I want and dont want to know my GFR.
Oh boy, do I know this feeling! I had an appt this past Thursday, and I was convinced it was gonna be bad because I have not been feeling well. Now that my gfr has dipped below 20, I feel doomed. I have to go every 2 months instead of 3, so the agony is just that much more frequent. My egfr is 15 which is pretty crappy, but the odd thing is that my BUN improved, my potassium is actually normal, and I show no signs of anemia. On my next visit, however, it will be time to test all of the other stuff like phosphorus, vitamin D and PTH. I'll be a nutcase by then, but that's not until 9 December, so until then, I really need to chill. There was no talk of starting D. Instead, we got into a discussion about Swedish films. We always spend maybe 5 minutes on kidney stuff and then 10 minutes on really important things, like books.
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We always spend maybe 5 minutes on kidney stuff and then 10 minutes on really important things, like books.
That is awesome! :thumbup;
Ive been on dialysis since 07, and i still dread seeing the dr, and getting bloodwork!
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I don't dread the neph anymore.... i think since my gfr dropped below 10 and i knew dialysis would be sooner than I had hoped... i just appreciated the "borrowed" time.
a few weeks ago he said it was time to start D and then i kinda freaked out... but we decided to wait another 2 weeks and that gave me time to wrap my head around it!
I will begin Dialysis tomorrow at GFR 6..... he did not want to push it anymore..
I really like my nephrologist ....
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Carol You are right about being on borrowed time once they tell you that your kidneys are failing. I lasted 20 months from the time they put my fistula in til my first D session. Having a great Neph doctor helps immensely. MM I like the fact that you can talk other that kidney stuff with the Neph. That why I enjoy my visits with my foot doctor except we talk politics. ;D
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My husband isn't particularly keen on my neph ever since my first appt when he told me that he didn't "have much hope for these kidneys." My husband kept trying to pin the doc down on giving some kind of time frame and percentages, etc, until I finally said, "Look, it just is what it is." If Eeyore was Jewish, that would be like my neph. He has really kept me going; it has been 6 years since that first appt, and he has kept me off dialysis (I am a terrific patient, though, it must be said! :2thumbsup;) Once I start dialysis, though, I will be interested to see how good he really is. He manages the D clinic along with my PHP; it's not part of the DaVitas or Freseniui of the world, and I'm not sure if that is a good thing or a bad thing.
But nowadays, it's just a matter of looking at my labs (I see my results before he does, so I'm usually prepared with questions if necessary), checking my heart, etc, and then having a bit of a natter about other stuff. I like it that he sees me as a fascinating person in my own right ( :rofl;) and not as just a pair of dying kidneys. I do what I can to sorta stand out from the crowd so that all of my health care providers will remember that I am more than a list of numbers.
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we will be seeing my mom's neph tomorrow, the thought of her undergoing dialysis scares and saddens me. im sure she's also feeling that way...it's like a damocles' sword. :(
I've used the Damocles' sword analogy many times. So, how did the appt go?
the neph was very happy to see me for the first time, usually my father and sisters go with her. she was explaining how our kidney function...from the blood going to kidneys, etc. my mom's lab results...crea 6.9, gfr 12.7, the neph is really pushing for the placement of fistula which i already explained to my mother. they have this notion that once fistula was placed, you'll start D. our next appointment will be on November and the the neph hopes by that time my mom already got her fistula.
damocles' sword is just very fitting if you're on the pre-dialysis stage.
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kremizin, how does your mom feel about getting a fistula placed?
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Neph called today and now moved my appointment to oct 19th at 1pm oh man now i need a drink...... I gave bllod today and now i will wait wait wait.................................................. shit.....
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:rofl; :rofl; :rofl; :rofl; :rofl;
Woodsman, its good to have sense of humor on days like these. With all the seriousness of having to start D its good to have that humor to make your spirits rise up once in a while. When I get get one of those bad report cards I think of what I ate before the labs and think on how I can lower the bad parts for the next monthly draws. Then I go to the comedy central channel and laugh my a** off until the techs tell me to Shshsh...your laughing to hard. I sometimes ignore them ;D
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On blood draw days, I just take a deep breath and think...whats done is done and I can't go back in time. But, next time I can try to be more aware and do better...I HOPE! It's very stressful when the neph. makes a point of talking to you/making and additional appointment with you, and you have to wait for the gravel to fall. All's not lost, there is always next time. Keep your chin up along with your spirits :bestwishes;
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kremizin, how does your mom feel about getting a fistula placed?
i dont want to entertain her idea of just wait and see. she's a religious person and i've heard her say a couple of times when confronted with issues regarding dialysis...."with God's mercy...." i guess she's having difficulty accepting the fact that sooner or later she'll need dialysis...she's also thinking that not only this will entail physical suffering but also financial burden.
we have a male neighbor who is also a candidate for dialysis...who once said...he'll just commit suicide rather than undergo dialysis. guess what...he now got a fistula. :rofl; afraid of dying! :2thumbsup;
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Oh woodsman, I can't believe you are going to have to wait!! I've been looking to see a post from you, and now I read this. I think I would have slit my wrists by now. :rofl;
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Oh woodsman, I can't believe you are going to have to wait!! I've been looking to see a post from you, and now I read this. I think I would have slit my wrists by now. :rofl;
I am a avid outdoors man and this fistula will really hamper me. i am a bow hunter, fisherman, wood cutter and i build things, sheds porches, bird houses whatever. I will not be able to pull back a bow with a new fistula installed... let alone split wood. I'll survive for sure but the waiting is hard .
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Have you spoken with a vascular surgeon to ascertain exactly how a fistula will impact your outdoor activities? You may not be nearly as limited as you think. I can see how restricting some activites post surgery would be in order, but once the incision has healed, I don't think you'll have to stop doing all the things you enjoy.
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Have you spoken with a vascular surgeon to ascertain exactly how a fistula will impact your outdoor activities? You may not be nearly as limited as you think. I can see how restricting some activites post surgery would be in order, but once the incision has healed, I don't think you'll have to stop doing all the things you enjoy.
Yes after it heals i would be okay to do things again but i would be worrying about injuring it and then having issues with it. Bow season starts next weekend and my app. is Oct 19th thus my dilemma, I can always sit out this season but i hunt with my sons and i don't ever want to miss my time with my boys... Oh well life goes on... and on.
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It really hurts when kidney disease starts interfering with time with your family.
I understand worrying about injuring your fistula. But most problems with fistulas are cardiovascular in nature, so it would seem to me that the more active you stay, the better the blood flow, and the healthier your fistula. When I asked about keeping my fistula safe, etc, my surgeon told me to ignore it and to use that arm as much as possible. The only things he told me not to do were no bp readings and no blood samples should be taken from that arm.
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Well the wait is over and the news is bad. Doc says GFR is at 11 and creat at 5.53. I have to go in for an appointment with the surgeon and then the fistula. then he says by Thanksgiving maybe dialysis. This was not the news i was hoping for and now i am thinking there is little hope for a normal life.
I am down in the dumps for now and my real kidney donor is my daughter in law is pregant and i'm going to be a grandpa for the 1st time and that was the best news i have had this year.
Can someone tell me what the bottom line numbers are for dialysis to begin. I don't feel so bad except maybe tried.... this sucks and i am just not a happy person right now. I also have to go to class to find out which dialysis i prefer, at home machine, stomach, or in center, which would you do?
Thanks for reading............... Jim
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My choice was in-center and that was right for me. I really wouldn't want to change it to some other modality.
Anyway, you've got a long time to wait yet. You've got to get far more ill before starting the big D. Best to try to maintain some function, dialysis is far from a cure; it's just a way of hanging on.
A Happy Thought for the Day :rofl;
Here's an official view: http://www.nhs.uk/Conditions/Dialysis/Pages/Results.aspx (http://www.nhs.uk/Conditions/Dialysis/Pages/Results.aspx)
"The average life expectancy of a person who is on dialysis is four years (assuming that they have not received a kidney transplant). However, many people who have dialysis survive for much longer than this (up to 25 years)."
Of course, that also means that many people who have dialysis survive for much less than four years.
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Oh, I know you must be in shock. I really do know much of how you feel, and it's not good. When I was told it was time to get ready for D, I just sat in my car and sobbed. It really does take time to get used to the whole idea.
The prospect of D is truly overwhelming, yet this is the time to start making some decisions. I can only tell you what I did (or, rather, what I TRIED to do). My first task was to get my appt with a vascular surgeon to discuss placement of the fistula. I am assuming you've decided on hemo as you are talking about fistulas, but might you want to do PD? Have you allowed yourself to make that sort of decision yet...PD vs hemo? Get your fistula/PD catheter so that you will be ready when it is time. Believe me...being ready will take a huge burden off your shoulders. Get that done first...just take that one step.
That's fabulous news about you being a grandpa. Isn't it a bit ironic...now you have a reason to go through dialysis. Funny how the world works. If you have a reason to keep on living (like being a grandpa!!!), then there is a reason to dialyze. I'm feeling all kinds of different emotions for you.
I'm going to do home hemo for reasons that are largely irrelevant to anyone but me. You make your own decision using the best information you can access. I'll be very interested in what your impressions are after you attend your class. That's good that you get to have some guidance in this area instead of just being left alone to educate yourself.
I'm so sorry you got bad news. I know this was exactly what you were frightened of, and it is awful when your worst nightmare becomes reality. But you may have a lot more time than you realize before D as Stoday suggested. How are your other lab numbers?
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woodsman - there really is no bottom line of numbers because everyone's situation is different. For example I had very few symptoms and a GFR of 6 when I started, while others may be in a bad shape at GFR 12+ and need to start - it's just as much based on where the patient is at, how they are feeling, what the quality of life is like, as much as the numbers, which are just a guide (of course if things like potassium or phosphates are out of control then perhaps D is the only way to help with that that may not strictly be related to the GFR).
I know it's scary - those of us who have started D have all been there and can relate in our own ways. Hang in there. You may start to feel better once you start D and you may find it's more managable than you feel and not so much a big of a deal. Yes, your life is changed in a number of ways, but you just get a "new normal" - it's not all bad and it's certainly not the end.
Hang in there, mate
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My choice was in-center and that was right for me. I really wouldn't want to change it to some other modality.
Anyway, you've got a long time to wait yet. You've got to get far more ill before starting the big D. Best to try to maintain some function, dialysis is far from a cure; it's just a way of hanging on.
A Happy Thought for the Day :rofl;
Here's an official view: http://www.nhs.uk/Conditions/Dialysis/Pages/Results.aspx (http://www.nhs.uk/Conditions/Dialysis/Pages/Results.aspx)
"The average life expectancy of a person who is on dialysis is four years (assuming that they have not received a kidney transplant). However, many people who have dialysis survive for much longer than this (up to 25 years)."
Of course, that also means that many people who have dialysis survive for much less than four years.
Geez that was encouraging..... lol
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don't forget many people start dialysis at a very old age or very sick with other issues and they are included in that statistic!! :cuddle;
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That statistic really bothers me because it feels like doom. So many people are desperately ill before they go on D. It skews the stats. And it is sorta irrelevant, actually.
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There is no set in stone numbers. So much depends on how you feel and your own neph's thoughts on when to start. Our KellyT was at 7% for quite some time and never went on dialysis before transplantation. She still felt good enough to go to Las Vegas for the IHD one month before her surgery. So, I guess what I am saying is it is all so personal. Watch all your numbers, eat well, take care of yourself. Maybe you will hold it off for awhile. But, then again, you may feel much better when dialysis does start. All the unknown is scary. I have to take things a day at a time or I would worry myself sicker!
That new grandchild will give you so much to look forward to. A new life, a new start and "Grandpa" needs to teach him/her all about the outdoors! What are you going to build for this new baby? It's first birdhouse? Maybe a wood toy? That would be something good to work on to take your mind off other things. :2thumbsup;
I don't believe in statistics anymore. It is my goal to prove them all wrong!! So far, I am doing a good job!!
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Thanks everyone for your support, it is hard to deal with but hey you play the cards you are dealt.!!
My numbers are as follows as best i remember them
Phosphorus, 6.4
BUN 17.7
Postassium: 5.3
creat 5.53
numbers seem high and they most likely are, what are your thoughts..
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I agree, about paying attention to your symptoms. Labs are fine, but the results vary from patient to patient.
How well you are eating, urinating, sleeping, your energy level, your ability to think and work, how you're handling emotions - look at all those things, along with the numbers, and you'll have a better picture of how you're doing.
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Considering your gfr, I don't think your numbers look that bad, actually. Your phos is a bit high, but I would have thought you'd be on binders if your neph thought it was too high for comfort.
Just remember that no one can make you go on dialysis if you do not want to. As long as you are reasonably well and don't keep landing in the ER, it's your call. I've always been told that when it is time for D, you will KNOW it! But I would still go ahead and get a fistula created so that it has plenty of time to mature. The last thing you want is to get into some sort of emergency situation and have to have D but not have an access ready to go.
How do you feel on a day to day basis? Are you able to just get on with life? Apart of the psychological stresses (understatement!), are you capable of enjoying most of your usual daily activities?
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I agree, about paying attention to your symptoms. Labs are fine, but the results vary from patient to patient.
How well you are eating, urinating, sleeping, your energy level, your ability to think and work, how you're handling emotions - look at all those things, along with the numbers, and you'll have a better picture of how you're doing.
Well i have been eating good. I have no issues taking a P and at times i feel totally run down but today i am good i feel well and motivated. I drive 65 miles each day to work then 65 miles home so being tired is part of that for sure. Thinking is okay but i have had some confusing days and emotions well my wife says i have none?? :angel;
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I think you may still have some wiggle room, but that's just my opinion, and I am no nephrologist.
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I think you may still have some wiggle room, but that's just my opinion, and I am no nephrologist.
you can be if you want, i like your style!!!
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I've always been told that when it is time for D, you will KNOW it!
That is very true
In March this year, four months before I started, I was weighing up the advantages and disadvantages of HD. I'll feel better, but I lose 1½ days a week, therefore can do more in the other 5½ days that are left. By July such assessments were totally pointless. My time had come, no doubt whatsoever.
When your time is up I'm sure you will have no doubt about it, no matter what your blood tests say.
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Considering your gfr, I don't think your numbers look that bad, actually. Your phos is a bit high, but I would have thought you'd be on binders if your neph thought it was too high for comfort.
Assuming your neph is competent.
My first neph let me go for a year and a half without binders or any education on the matter, despite my phosphorus never being lower than 8. By the time I went on dialysis, my phosphorus had spiked at 13 and I had joint pains and sore spots from calcifications. Still he never mentioned it until after the ER doctor put me on binders.
As you educate yourself, make sure to keep your doctors on their toes. I don't know why they ignore issues like that when all it takes is to write a prescription or recommend a change in diet.
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Restorer, that your neph let your phos get so high is absolutely criminal. Now, I'm all for being an educated patient, but the doctors are getting paid to treat us and to make sure that we understand our treatments. Not everyone is well enough to "educate themselves"; not everyone has internet access. Doctors should be willing to educate us, and when they don't, they are failing us.
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Well at 9am this morning i had an appointment at the Davita clinic for info about how and where i am going to do dialysis, I am opting for the N stage and doing it at home. I then took a tour of the dialysis unit and man i fell apart big time. All i seen were people just laying there doing what they needed to do to live and it hit me hard and anything in my life to date.
I was in nam and seen many things in my days but this was really hard. I had my wife with me but i had to make a Hasty retreat back out of the room and I've never backed down form anything in my life. WOW i never imagined it would be what it was.
I felt like a bit of a wuss aferwards because it almost brought me to tears. So much information was given and the nurse there was great but that room scared the crap out of me.
Sorry for being a complete ignoramus here but until you see it for real it's all seems fake...........
What are you thought on N stage vs going to the center...
thanks Jim
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:cuddle; Jim.... i felt much like you on my first visit to the center.... it was very difficult!
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Oh woodsman, I'm so sorry you had to go through all that. I remember the first time I went to the dialysis clinic to see the dietician...all I saw were row upon row of befuddled, sick and elderly people lined up in their wheelchairs waiting to be picked up. I left in tears. My mom was on D for the last five years of her life, so I saw the inside of many a clinic. There was always one or two relatively young and/or fit people stuck there in the room with others who were so desperately ill. You have no control over who does D in clinic with you. My mom actually liked her clinic and came away with interesting stories about the other patients and techs. She made some nice friends. But I don't think that's the route I want to go down.
I'm planning on doing NxStage. I've spoken with my neph about it, and he's all for it. I've talked to my husband, and he's already contacted NxStage and has been send some preliminary materials, including a DVD which shows how incredibly happy people are on NxStage. Of course, there is not any attention paid to the fact that D of any kind is traumatic! Nothing is easy, not even NxStage, but personally, I feel that if my husband and I are capable (and I think we are), then being able to do daily home hemo is right for me because at this stage, I want to stay as healthy as I can for as long as I can so that I can be fit for transplant when the opportunity arises. Doing home hemo in the evenings just suits our lifestyle. We usually watch a movie or read after dinner, so it will be more of the same, just with some machinery to deal with.
You're not backing down from anything...you are gathering evidence and are in the process of making a choice. Take control of what you can. You're on the right road. What you are having to do is hard in every sense of the word, but you're gonna make it. Still, it is rather overwhelming, isn't it.
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overwhelming is a understatement but your right its all part of it. I think it will get better as time goes by and my nurse told me that i am at 11% function today that was scary for sure....
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Woodsman.....I can so relate to the way you feel!!! I do have my fistula done and it was a piece of cake compared to what I had thought it would be.
I still have to make my appointment to visit the center here by me and that scares me too. I do however feel like I still have some control with the fact that I feel pretty good, except for being tired and fluid retention. My gfr is the same as yours 11 and all my other numbers are in normal range except for my creat being high (3.69) has jumped up in the 4 range and gone back down.
Thanks for sharing your journey with us.....makes me feel like I'm not so crazy to worry about all this as I do.
Moosemom.....you are an inspiration to me!!! You always ask everything that has crossed my mind and I totally enjoy your post!!!!!
Joy :)
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phew woodsman that's tough.
I actually never went into a unit before I started. Well wait, that's not strictly true.. I was there once to see someone, but I never got into the treatment area proper so I didn't really see the folks in their chairs. Once I got in to start I was so focused on my own treatment and learning stuff that i didn't really take much in about the other folks around and what they were doing(or not).
It is very confronting. I think nobody will think any less of you for your reaction. It makes it all that much more "real" - but you don't HAVE to be one of those folks who comes in and has a miserable time or not much of a life. Indeed to me clearly you're not. For me, I go in and well I don't exactly dread treatments. I'd rather be somewhere else of course, but it's just part of life now. In some ways I actually look forward to it, because I use that time to catch up on tv shows and stuff so for me it's like "oooh can't wait to see the new episode of Chuck!" and I hold off watching stuff till I D time, so it it's almost like get me the hell on so I can fire up my laptop and get into my shows! :rofl; I guess I just try and make it into a positive experience for me.
Yes, from time to time I see things there, patients and bad things that happen and I feel sad for them, and I guess I think "there but for the grace of God" - or even "that could be ME someday" but I am also aware that I am quite different to most of the patients in my unit. I'm much younger, probably a bit fitter and generally otherwise healthier (ie: my hearts, lungs etc are all fine) and that D is just part of my week to help the rest of the week happen. It's NOT what my week is about (apart from wating to watch Chuck :) ).
I think it is good that you have had that experience - next time you will know more of what to expect and you will have come more to terms with it within yourself (hopefully).
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I too asked my vascular surgeon if I would have any restrictions (at that time I worked stocking shelves in a supermarket) He said "none whatsoever, the only thing that will hurt it is if you put pressure on it" he had already told me no "blood nor B/P on that arm"
After I came out of fistula surgery, Dr came to see me in recovery and said "do me a favor and don't baby your arm"
YOu can still spend time with your boys,,,,,,, but this time as a spectator sort of speak :'(
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The first time I saw the inside of the HD uniit was for real. I'd tried to get a visit before I started, but I was fobbed off with some excuses.
For my first day I was already in hospital because I'd gotten so bad. I was wheeled through the bowels of the hospital making the unit seem to be some underground hell-hole. The timing was just right too, as everyone was being taken off or set up, so all the machines were beeping and clattering away. No wonder I'd been kept away! I didn't notice the other patients; I was too focused on the needles they were about to stick in my virgin fistula...
Including travel, HD takes five hours out of a day thrice a week. I think that's a small price to pay for being OK for the remainder of the week. I know it sounds pretty rough, woodsman, but I'd choose a dialysis session above a session in the dentist's chair every time! I'm sure that when the time arrives for you, you'll be surprised at how easily it will become part of your life.
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I hope I will be like RichardMEL and will be able to use my D time as a chance to read and watch stuff on my laptop. I plan to do NxStage at home like I mentioned, but I know that at first, I will be spending time in clinic, and I hope that it will soon just become another thing I have to do, like laundry. If I was certain that I could go in, hook up, do my time, get off and feel fine, I could cope with that. I get worried, though, that my time actually on D will be a misery. I will do whatever it takes to keep me well, but I am not sure I could endure D if all it did was to keep me alive and not much more than that. But I try not to think along those lines because I'm pretty healthy considering, and I think it is about time for something good to happen to me...I'm owed bigtime! :rofl;
Woodsman, what's next for you? And if I may ask, how are your wife and sons handling all of this? Is there anything we can do here on IHD to help them?
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I hope I will be like RichardMEL and will be able to use my D time as a chance to read and watch stuff on my laptop. I plan to do NxStage at home like I mentioned, but I know that at first, I will be spending time in clinic, and I hope that it will soon just become another thing I have to do, like laundry. If I was certain that I could go in, hook up, do my time, get off and feel fine, I could cope with that. I get worried, though, that my time actually on D will be a misery. I will do whatever it takes to keep me well, but I am not sure I could endure D if all it did was to keep me alive and not much more than that. But I try not to think along those lines because I'm pretty healthy considering, and I think it is about time for something good to happen to me...I'm owed bigtime! :rofl;
Woodsman, what's next for you? And if I may ask, how are your wife and sons handling all of this? Is there anything we can do here on IHD to help them?
Whats next for me is a visit to surgeon on the 27th then surgery when he schedules it but his nurse said within the next 2 weeks.. Then more blood tests, then back to neph in 6 weeks then if creat is still maybe dialysis. I am also getting the Nx stage because i don't even want to think of sitting there in a center when i can do it all right at home... My wife is in nursing school and will graduate in june of 2011. She is strong and knows things i can only begin to know. My sons are okay with this so far but i need to tell them more..
Thanks Moosemom and the rest of you, i have learned tons here and even the nurse at the center i visited said this site was very informitive and likes it very much.
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I'm not an expert, but I think you will be the perfect candidate for NxStage, woodsman. I mean, with your wife in nursing school...well, that's a bit of a good omen!
It's always hard to know what to tell the kids, but I'm sure you will come to know just what to say and how to say it. I'm confident that your sons will be a source of strength. And that grandbaby that's coming...oh man, you have so much to look forward to!
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Hi all! I went to the surgeon today and he checked my arm and said it looks great for the fistula. Surgery is scheduled for Nov 9th at 1:30pm. I can only begin to tell you all that i was how can i say it...... nervous to say the least. I have never had any type of surgery, broken bones, etc... I had stitches many times but this is a real bummer........ no work for 2 weeks (no hunting) oh crap........... :urcrazy;
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If you've never had surgery before, it can all feel really overwhelming and scary. The anticipation of it is the worst, it really is. I was an absolute basket case beforehand, but afterwards, I felt such incredible relief on many levels, and I think you will, too.
Those two weeks of limited activity will fly by. You'll be back to hunting in no time.
Where will your fistula be? That's great that your surgeon doesn't anticipate any problems. Just get it done, let it heal and get on with life!
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If you've never had surgery before, it can all feel really overwhelming and scary. The anticipation of it is the worst, it really is. I was an absolute basket case beforehand, but afterwards, I felt such incredible relief on many levels, and I think you will, too.
Those two weeks of limited activity will fly by. You'll be back to hunting in no time.
Where will your fistula be? That's great that your surgeon doesn't anticipate any problems. Just get it done, let it heal and get on with life!
Fistula will be in left forearm and yeah what can i do i am trying to accept this whole thing but after all these years it seems like i just hit a dam wall and bang here i am....
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Yeah, I don't care how many years you've had to "prepare" for this eventuality...you're never really prepared. It's still a shock. Still a shock.
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I keep telling myself it will be all right, and I have seen the inside of a unit. What scares me, is will I be sick on D day? Will I feel all tired and washed out? Will I have to use the bathroom, and not make it in time? Will I get so hungry I cant stand it, or will I be so sick that all I will do is. ( well, you know). Having needles stuck in your arm, cant be fun, but I think I can stand it, but three times a week? I just dont know.
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Will I have to use the bathroom, and not make it in time?
:rofl; :rofl; :rofl; :rofl; :rofl; if only...
I used to worry about that before I started HD. I can assure you, no one has a problem!
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Jean, I know EXACTLY what you mean because I've thought all of those same things. You already know about the machines and the needles, but it's the little details that can be worrisome. I get really REALLY cranky if I get hungry...will they let me eat? Will I get sick and pass out or throw up? Ugh...
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MM and Jean, I know what you mean by the unknown like will I be able to take the pain of the needle sticks 6 times a week but I did it and I am afraid of needles, They started me with the smallest needle, size 17 needle, and over many months worked my way up to the largest needle, size 15, there maybe smaller needles at your clinic. I'm pretty sure you read other posts that say your site numbs up over time and that is true. I am not going to say that it stops being pain free because there are times when I have to grin and bear it, such as when starting a new area. If they get to close to a nerve I would tell them to stop immediately. The only thing is that I can't stand looking at the PCT putting in the needles. There are also numbing cremes that can be applied before your treatment. Ask questions before you start to see if you have an experienced PCT if not then request one who is. If they say she bot not available at the moment then tell her you'll wait until she is. Not all PCTs are created equal. ;D
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So many things to think about. My mind is always in 10 different places lately and all of them not good. I am getting little sleep thinking about this fistula and hoping it works and have no problems with it. I keep seeing them needles being poked into my arm and i must digrest........................................ :urcrazy; :Kit n Stik;
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Yes, there ARE a lot of things to think about. But I'd bet that when you go hunting, there's a lot to think about. Or when you are starting a new building project, there's a lot to think about. Dialysis just is not as much fun, and it's not something that you are choosing to do, so it is easy to resent having all of this stuff to think about. Who wants to have to mentally figure grams of phosphorus or potassium whenever they are about to sit down to a meal?
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Thanks MM your are a real sprit lifter and i always look forward to reading your posts.
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I hate doctors. I always have. I firmly have always believed it is a crapshoot whether they make you more sick or help. Unfortunately I need them now, and my opinion hasn't gotten any better. I am on my third nephrologist is essentially three weeks. I was seeing the first one for a few months, what it took to get to get the diagnosis. I couldn't get a readable printout of my labs, for one. There were other things wrong, but long story short, I went to someone else once I found out how serious this was. The second neph acted funny about the fact that I was getting a second opinion and said she trained with my first neph, and that he was a very smart guy. I sensed an old boy network that was not in my favor. They seemed paranoid about getting sued. But I got more information from her in one meeting than in months with the other guy. She also gave me a name at the University of Washington and made me aware of the NW Kidney Center. I went to a nutrition class at the kidney center since and am following up with a dietician. I am just pissed that I could have done that 2 months earlier. I had a second appointment with her, and I am going to skip the details because I don't feel like typing that much, but it was awful. I cried for two days. I followed up at the UW and I got more info in a more understandable way. Also they are toying with the idea of the experimental treatment rituximab, and if I were to opt for this, they are the only ones who can do it. So I'm sticking with them for now, but this one strongly defended the other two doctors, stating that they trained there and he knew them. I didn't really care about that, and I explained that I wasn't doing this for fun, that I was just trying to get information and the best treatment I could find. Since they are always in such a rush I would have rather spent the time getting my questions answered than defending or not defending the other doctors. Ultimately the one thing they all had in common was to tell me at some point that my disease is rare and they just don't know. They don't know what causes it, how to treat it, but it is progressive. (It is fibrillary glomeronephritis) So, it stands to reason, if someone told them that they had a rare progressive disease, wouldn't they too try to find the best infromation they could get? I want to swear, I want to scream, I do cry, and in the end I just do what is in front of me and say screw them, I have to do what is best for me. Some of the information I get is conflicting, and processing it all has been difficult at best. I do not simply trust any doctor, and have had them run out of the office bruskly while I was in the middle of a question. They are all rushed, cold and impersonal. Our system just sucks, the doctors do not have the time to adequately treat a single patient. I have to extract information from them like I am pulling teeth. And I have to advocate hard for myself. It really shouldn't be this hard just to get reasonable care.
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rfranzi, we all know that we have to be our own best advocates, but sometimes you just get tired and want someone else to take the load off of your shoulders for just a little while. :cuddle; When you feel that you can't trust your doctors, the burden is even heavier.
Here on IHD, you will find many people suffering from CKD, and once you have been here awhile, you'll suddenly discover the fact that all of us present in a different way. How one person is affected by fsgs may be entirely different from how I am affected. You are at the very early stages of your "renal journey", and I think it is true that your doctors really don't know for certain what exactly is in store for you. Sometimes we just cannot get the answers we so desperately want.
Many years ago when my son was young, I suspected he might be autistic. He was later diagnosed as such. I talked to so many doctors and specialists. I attended conferences. I called universities. I had files filled with information on autism. I soon discovered that fully 90% of the information I uncovered was completely irrelevant to my son's particular case. As you do your research and advocate for yourself, please try to keep in mind that no one has researched YOUR body or YOUR kidneys. Gradually sift through all of this stuff and learn from what is relevant.
I know you distrust doctors, but these people are going to be a part of your life for the rest of it unless they find a cure. No one knows what causes fsgs or really how to treat it, but they know it is incurable and progressive, just like your disease. I'd rather have a neph who tells me he just doesn't know than to have one that just makes up crap so that they sound more knowledgable than they are. Actually, my neph told me 6 years ago that I'd be on dialysis very soon...six years ago. I trust my neph, but he doesn't have a crystal ball. Your doctors don't, either.
I'm curious...what do you believe a doctor needs to do before you will trust him/her? What can they do to earn your trust? Needing to do what is best for you surely includes establishing a rapport with a neph who you will gradually be able to trust. This is a scary time, I know, but I hate to see you entering into the fray with your armour at the ready to defend against people who may truly be trying to help. I don't like the idea of you possibly sabotaging a relationship with your medical team before they have a chance to prove their worth. It is hard to be nice and cooperative when you are scared and frustrated.
Doctors are always rushed for time, and it makes you feel diminished. I really hope that your new docs at U of W will be able to earn your trust and that they will give you all the info you need regarding the decision to treat with rituximab. I'm sorry this has all been such a difficult experience for you. Nothing about this is easy.
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I have to go back on the 2nd and wanted to ask some questions when i get there. They have to do the Doppler thing on my arm, What should i be asking this surgeon, things like how much scaring? what will it look like and how much pain will i be in and for how long, What else should i be asking??.
Thanks Jim
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The doppler thing is actually very cool. I would ask the following:
1. What signs should I be looking for that tell me there may be a problem?
2. Are there any activities I should stop doing (my surgeon told me to literally "ignore it", and my neph said the same. Both wanted me to use my arm as normally I do to keep the blood flow going.)
3. Ask about numbness. You may very well experience numbness around the incision, so ask how long you can expect it to feel numb. Chances are he'll tell you six months, but in my experience, it didn't take nearly that long for regular sensation to return.
4. Sure, you can ask about scarring, and you might ask him to draw on your arm exactly where the incision will be and where the fistula wil actually be located. My surgeon drew all over my upper arm, and I couldn't make heads or tails out of his doodlings, but I wasn't concentrating very well on that day. Plus, the surgeon was very nice but had a very think Korean accent, and I was too mentally tired to really take it all in.
If I think of any more questions, I'll let you know. Please come back on the second, if convenient, and tell us all about what you find out.
Everyone experiences pain differently, but I ended up just taking advil because the prescription pain killer I got made me feel like I was on a small boat. I'd rather feel discomfort than feel seasick, thank you very much.
Hope this helps.
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I really appreciate your feedback, and to answer your question: I was just venting here and being brutally honest about how I feel, but having said that, I think my expecations were in line and I trust my instincts with regard to how I am being treated. Since there are different doctors to address, the first one: I would have expected a readable copy of my lab results, which I couldn't get, and I would have expected a referral to the NW Kidney Organization or some support/dietary information, which I didn't get. Not crazy expectations....The second one was a minimal amount of adequate time, an answer to my questions even if it is "I don't know" - I didn't go into it in my last post, but when I asked about alternatives to medications and the relation to the quick drop in my gfr in a short period of time, she responded "well, you have a terrible disease", entirely avoiding the question and being cruel in the process, especially in her tone, which was like I was taking up too much of her time. You're right, I have to see these people for a long time now, and I need to feel that I am being treated with compassion and care. The third doctor was better with all of these things and I intend to work with him and develop a relationship. My only complaint is that he was defensive about the other two. But it is not a perfect world, he answered my questions and said he didn't know when it applied. I just knew I needed to get all the information I could both to understand my disease and to try to take the best care of myself as we navigate through this (i.e., diet, medication, etc.) So I will be working with the new nephr, to get to know each other over time and to treat this in the best way possible. I have just always been frustrated with how lacking many doctors are in the quality of care and what it takes to find a good one - seems there is little accountability for it either. If you buy a pair of shoes at the store and they don't fit, you can return them. If you see and doctor and don't get what you need, you still have to pay and then go and do it all over again at your own expense. Sometimes you have to do it a few times to get it right. It is worse dealing with them, to me, than hearing about the disease in the first place. Let's face it, our medical systems leaves some things to be desired. The news is relatively new, and it is the one thing I never wanted to be in, but here I am, so I am actually proud of myself for persevering through it and finding the best care that I could. I feel and I hope that I have the best care I can get, can get my questions answered and will be treated with some level of respect in the process. Just took a while to get there.
rfranzi, we all know that we have to be our own best advocates, but sometimes you just get tired and want someone else to take the load off of your shoulders for just a little while. :cuddle; When you feel that you can't trust your doctors, the burden is even heavier.
Here on IHD, you will find many people suffering from CKD, and once you have been here awhile, you'll suddenly discover the fact that all of us present in a different way. How one person is affected by fsgs may be entirely different from how I am affected. You are at the very early stages of your "renal journey", and I think it is true that your doctors really don't know for certain what exactly is in store for you. Sometimes we just cannot get the answers we so desperately want.
Many years ago when my son was young, I suspected he might be autistic. He was later diagnosed as such. I talked to so many doctors and specialists. I attended conferences. I called universities. I had files filled with information on autism. I soon discovered that fully 90% of the information I uncovered was completely irrelevant to my son's particular case. As you do your research and advocate for yourself, please try to keep in mind that no one has researched YOUR body or YOUR kidneys. Gradually sift through all of this stuff and learn from what is relevant.
I know you distrust doctors, but these people are going to be a part of your life for the rest of it unless they find a cure. No one knows what causes fsgs or really how to treat it, but they know it is incurable and progressive, just like your disease. I'd rather have a neph who tells me he just doesn't know than to have one that just makes up crap so that they sound more knowledgable than they are. Actually, my neph told me 6 years ago that I'd be on dialysis very soon...six years ago. I trust my neph, but he doesn't have a crystal ball. Your doctors don't, either.
I'm curious...what do you believe a doctor needs to do before you will trust him/her? What can they do to earn your trust? Needing to do what is best for you surely includes establishing a rapport with a neph who you will gradually be able to trust. This is a scary time, I know, but I hate to see you entering into the fray with your armour at the ready to defend against people who may truly be trying to help. I don't like the idea of you possibly sabotaging a relationship with your medical team before they have a chance to prove their worth. It is hard to be nice and cooperative when you are scared and frustrated.
Doctors are always rushed for time, and it makes you feel diminished. I really hope that your new docs at U of W will be able to earn your trust and that they will give you all the info you need regarding the decision to treat with rituximab. I'm sorry this has all been such a difficult experience for you. Nothing about this is easy.
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I agree with everything you've said, and you are right...it is all a process. Finding and putting together a medical team you trust should not just be left to chance, but unfortunately for those of us whose insurance tells us who we are allowed to see, that's often how it is done. I'm glad you have not had to be trapped in that particular situation and have found people who can give you good care. Good for you for perservering; that is not easy to do when you've been thrust in a scary situation not of your choice. I will be very eager to hear how you get on, so do please post about your various appointments. Now that you have described some of the behaviour/attitudes you've been subjected to, I can certainly understand why doctors are not your favourite people in the world.
You make a very good point; having a terrible chronic disease is hard enough without having to deal with the health care system, the bureaucracy and the idiocy of so many elements in the system.
This is the place to come when you need to vent and to be brutally honest! I'm glad you did just that.
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Went in today for the arm mapping and it went well. The mapper guy was the silent type and did not ANSWER MUCH go figure. I am having a ton of anxiety here like never before and it is really beggining to affect my daily life.
Can't wait until the surgery is over. I had to use spell check 4xs just to type this............... :Kit n Stik; :puke;
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Went in for pre op at the hospital and they showed me somewhat what they will be doing. EKG good, blood draw was not to good person was digging around looking for a vein, ouch,,,, BP good. it's a go for tuesday 1:30pm........yeah me. :puke;
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My cardiovascular surgeon did my mapping; he's Korean, and I could hardly understand a word he said. He's been in this country for yonks but still speaks in heavily accented English; despite me inquiring several times just exactly what he was going to be doing, I gave up and just figured it didn't really matter as long as the thing worked. He ended up drawing all over my arm to show me which he was going to connect to what, but that didn't help, either. ::)
On the day of my surgery, the anesthesiologist told me that the surgeon wanted me to have just a shoulder block. I was in such a state that I told him that this was the worst day of my life and that I didn't want to remember a thing about it, so he'd damn well better just put me out. He left and consulted with the surgeon, I guess, because he came back and agreed to a deeper anesthesia. Of course, that stuff ended up making me sick (I don't do anesthesia, really); I was still throwing up as they wheeled me out of the hospital! Anyway, I paid the price for being such a weenie, but I don't care.
Look, I understand EXACTLY the anxiety that you feel. I would suggest seriously considering asking your doc for a prescription for Xanax to combat the anxiety. It's one thing to have surgery to FIX something, but having surgery to get yourself ready for something like dialysis is, in my mind, a whole 'nuther thing. I had to have a hysterectomy 2 years ago, and that's a pretty rough thing for a woman, but seriously, I didn't have a single qualm about that, not like this fistula surgery. Please consider it, OK? I don't think suffering like this has any great cosmic lesson...it's just suffering. If you can do something to ease your anxiety, even if it is a little pill you'll take on a temporary basis, please think about it.
I will never say to anyone that everything is going to be OK because sometimes things don't turn out that way, but if anyone thought this surgery might go horribly wrong, they wouldn't perform it. It sounds like underneath it all, you are a healthy man, and as such, I really do believe that you will suffer a lot more between now and the 9th than you will once your surgery is over. In the grand scheme of things, creating an A/V fistula is small ball. But that fact doesn't really relieve you of the anxiety, does it! I'll be very relieved on your behalf once it's all done and dusted!!
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Thanks for the advise MM but i am going to try and face this headon. I am not going to let it bother me this weekend at all, i will hunt and have some fun for a change. Thanks for all your support. if it gets to be enough i will not hesitate to ask for some happy pills... again thanks
Jim
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Thanks for the advise MM but i am going to try and face this headon. I am not going to let it bother me this weekend at all, i will hunt and have some fun for a change. Thanks for all your support. if it gets to be enough i will not hesitate to ask for some happy pills... again thanks
Jim
Great! I hope you have a fabulous weekend. You deserve some fun!
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Thanks everyone for the support. Wish me luck as tuesday i have surgery at 1:30pm,, I am let's say no happy about it but i have accepted it.
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I came online for the express purpose of wishing you luck, woodsman; I'll be thinking of you tomorrow! When you feel like it, please come and post about how it went. We wish you the best of luck.
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Thanks MM i was hoping you would stop by and wish me luck. You have been a great shoulder for me to lean on and i can't tell you how much i appreciate it. This place has been awesome and i have learned so much from everyone, MooseMom you ar5e very special and i thank you. :cuddle;
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How are things going, Woodsman? I keep reading your posts. I am a little behind on posting right now, but I keep checking here to see how you are.
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Well i am back!!... :2thumbsup; I completed the fistulla surgery and all went well. I was off work form the 9th -the 29th. Healing well staples are out but i don't see any signs of a fistula forming yet, how long does it take? to see something visible or maybe it won't be visible??. I sure can feel it like a vibration/thumping that is very pronounced in my wrist to elbow area. Scare still tender but not to bad. The wrose part was the nurse i had kept missing the vein with the needle for the IV before surgery. They poked and prodded 4xs to get it,,,, ouch
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There you are, woodsman!!! :clap; :clap; :clap; I am so glad to see you posting again! I've been wondering how you are doing and have been checking this thread each day, hoping to see that you were doing well.
If you are feeling that vibration/thumping, then your fistula should be doing great. It took me several months before I started actually seeing my veins become more pronounced. My fistula is in my upper arm, so it may be different for me than it will be for you, but to my eye, the veins in that area are very visible, and down around my elbow, I can see throbbing. My surgeon says my fistula is excellent, so I guess this is all normal. I would imagine that as time goes on, you may notice the same thing, but since yours is in a different location, I wouldn't hazard a guess. But that "thrill" you feel...that's what you want to be feeling.
Oh, I hate the IV in the back of the hand thing! Is that where they had to poke you 4 times?
Anyway, I am so very glad that the surgery went well and that you are back!! Yay!! Well done!!
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aaahhhhh!!! Sounds like old memories. After my fistula surgery I felt the thumpity thump in my wrist. After I started using it it started growing bigger and longer. I can't use it after a certain point because it goes deeper into my arm. They even stick me in my upper arm about 3 inched above my elbow. Although they stop doing that because they said they want to save that area for a new fistula if the old one goes bad.
So long I hope that you have a long life on your fistula.
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Before you had to really think about dialysis, back when life was still "normal," what were your veins like? I'm a bit concerned because they have to use a butterfly needle for my regular labwork. My veins are small. It makes me wonder if I'll have problems if I need a fistula later.
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Before you had to really think about dialysis, back when life was still "normal," what were your veins like? I'm a bit concerned because they have to use a butterfly needle for my regular labwork. My veins are small. It makes me wonder if I'll have problems if I need a fistula later.
Many years ago, I had a 24 hours glucose tolerance test which required me giving a blood sample every few hours. They never could draw blood from my left arm...the phlebotomist, whose name was Sebastian and who had the grooviest afro (this was many years ago...), fled in tears. But I never had trouble with the veins in my right arm, so all my blood samples are taken from there. However, my fistula is in my left arm, and it is doing very very well (although I have yet to use it) despite my concern that my veins might be small. I don't know if you will have any trouble, but I'm sure you are not the only person in the world who has smallish veins and needed an AV fistula. Still, yours is a good question.
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Oh boy can i feel the vibration/thumping going on but i don't see anything yet. It almost feels like something is crawling on my arm wrist/area. I am hoping dialysisi won't start anytime soon but i'll just have to wait and see.
Hang tough MM maybe a donor is coming your way soon...
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Oh boy can i feel the vibration/thumping going on but i don't see anything yet. It almost feels like something is crawling on my arm wrist/area. I am hoping dialysisi won't start anytime soon but i'll just have to wait and see.
Hang tough MM maybe a donor is coming your way soon...
It took a fair while before I actually SAW anything. But goodness, can I FEEL it!!! Actually, I've been to my surgeon a couple of times because I just didn't know if what I was feeling was normal. I can feel it ALL the time...it feels like the walls of all of my veins are being stretched. Oh! That's EXACTLY what is happening! I guess I should be glad, but it feels creepy, and sometimes it just HURTS, especially at the end of a day when I've been busy. It's as if my veins get tired.
I, too, hope that you won't have to start D any time soon, but at least now you are ready. Those permacaths are a highway for infections, so I'm glad you'll be able to steer clear of those! You made the right decision. I know it wasn't easy, but it was right. You've done all you can do at the moment. It was a really tough hurdle, but you cleared it with aplomb! :bow;
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OK, I'm going to be really obnoxious and announce that Jean has a neph appt tomorrow (as posted in another thread, so I'm not telling tales!), so good luck to you! We'll be eager to hear about it when you get home and feel like posting.
I had an appt scheduled for 9 December, but I rescheduled it to 6 Jan because I ate waaaaay too much phos over T-giving, and my poor kidneys need an extra month to get rid of it. :rofl; I'm going to be extra special careful til then.
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I thought my appointment was next week, but my nephs office called yesterday to remind me that I have an appointment TODAY. ack! I guess I wrote it down wrong. That's a week less that I'll have to stress out about it anyway.
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I thought my appointment was next week, but my nephs office called yesterday to remind me that I have an appointment TODAY. ack! I guess I wrote it down wrong. That's a week less that I'll have to stress out about it anyway.
This could be a blessing in disguise! The stress is killer...
Would you mind posting about your appt when you get back home? Thanks!
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'Course I'll post! It'll likely be tomorrow though. I don't have a home computer. I haul my work laptop home once in a while, but since I'm on a computer all day, every day, I don't often take it home with me.
I appreciate the support from everyone here. :grouphug;
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'Course I'll post! It'll likely be tomorrow though. I don't have a home computer. I haul my work laptop home once in a while, but since I'm on a computer all day, every day, I don't often take it home with me.
I appreciate the support from everyone here. :grouphug;
We'll be waiting! Post when you feel like it. No obligation!
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Fistula still feels like something crawling on my wrist, pic below of it.
(http://i22.photobucket.com/albums/b325/buckdropper/deer003-1.jpg)
(http://i22.photobucket.com/albums/b325/buckdropper/fistula1.jpg)
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Good news is that this is probably the worst it will look! When will you get the staples out?
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Had my neph visit today. GFR only went down 2 points to 22 and I am feeling okay. Sometimes I actually feel good too. Bun and Creat went up a couple of hairs. So, now, I dont know if it is due to the angiogram or just the natural course of the disease.My visits are still 3 months apart, and in 3 months just about anything can happen.
To Woodsman
Your fistula doesn't look bad at all. I could see the tape marks on your arm. Must hurt like crazy with all the hair on your arms. The small indignities we must tolerate. Geezh!!!
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Woodsman, it looks like you're healing well! Those staples look creepy though.
My creatinine came in at 3.4 at my appointment yesterday. My previous test was (I think) 2.71. I have to re-test in two weeks and if it's still over 3, I'll start the transplant evaluation process. My siblings can't donate directly to me because of the hereditary nature of my disease, but my neph said yesterday that if they're interested in a paired exchange, that's a possibility. I only have one sibling who might be a possible donor (brother has prostate cancer, other sister has several non-medical issues), so crossing my fingers that my one sister might be interested.
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Jean, I've kept a copy of all of my labs over the past 6 years, and there just never seemed to be any rhyme or reason behind the fluctuating egfr. It could be 22 one time and then 24 the next and then 21 the time after that, and the same with BUN and creatinine. With hindsight, if you're still above 20, breathe a sigh of relief and try to get on with life. Do your numbers bounce around like that? I think the neph is looking for trends more than he is looking for a specific number. Remember that these labs reflect a snapshot in time.
Deanne, it was a huge shock to me when my creatinine went over 3 the first time. I sobbed all the way home, I don't mind telling you. Then it dipped back below 3, then just above 3...it has been pretty wobbly. I used to go to the neph every 3 months, but now I have to go every 2 months. How are you feeling? Are you really stuggling physically, or are you getting along well enough? Paired exchanges are a brilliant idea...they really open up the realm of possibilities. I hope your sister will be interested. Let us know about your next set of results, OK?
Are you doing OK with this news? Is this a big shock to you, or is it pretty much as you expected? :cuddle;
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It was no surprise and I'm doing OK with the news. I've had kidney disease for almost 40 years -- that's a long time to get used to the idea! I hit the dreaded 3 mark once before, then dropped back to 2.5 when my dose of lisinopril was reduced from 40 mg/day. It's been creeping slowly back up over the past year since then. She's pulling me off lisinipril entirely now. I'm only on 2.5 mg/day, so I can't see that such a small dose will make a huge change in my creatinine level, but who knows? Except for creatinine drops explained by the changes in lisinopril, I haven't seen my creatinine level bouncing up and down the way I've seen other people describe here.
I've been seeing my neph every 3 - 4 months (It's supposed to be 3, but sometimes it's hard to get an appointment). Now she told me she wants to see me again in January, so I'll run labs in two weeks to re-test without lisinopril, and then again a couple of weeks after that before my January appointment. I feel OK for the most part. Tiredness and concentration are problems, but they have been for a long time. I have trouble staying focused at work and I make more mistakes than I used to. Those are very frustrating things for me.
My neph told me she wants me to ramp up my exercise level. When I first started seeing my neph, I was walking marathons. She loved that. Lately, I've gotten lazy and only walk about 3.5 miles on Saturday and Sunday mornings. I have a Wii, so I pulled out my EA Active Wii game last night and will get back to using it daily, starting last night, even though I think of it as torture!
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I need to ramp up the exercise, too. I used to walk 2-3 miles a day, but this year has been traumatic in so many ways, and I've had to travel a lot. I got out of the routine of daily exercise, and now that it is winter, it gets harder. I don't mind the cold, but the idea of slipping on the ice scares me. I'm originally from Texas and I don't do ice! But I have snowshoes, so I have no real excuse. I feel so much better when I walk, so I need to back to my exercise schedule.
I've thought about getting a Wii, but I don't know much about it. Is it a separate platform from an Xbox or a Playstation 3? Can you tell me more about it? That might be really helpful to me. Thanks!
Forty years with CKD?! Oh man...you're a pro! Well, I'll be interested to see what your next set of labs will show without lisinopril. The ACE inhibitor I take is ramipril...is there any real difference between that and lisinopril? I've seen lots of people taking lisinopril and have wondered what the difference is. Do you know? Is it just a neph's preference that makes him/her prescribe one over the other?
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I did a quick search on ramipril and it looks like it might have the same effects on the kidneys as lisinopril, bit I can't tell for sure. It looks like they're similar meds. I saw a lot more problems on the kidneys listed with lisinopril, but still some potential for kidney problems with ramipril. It looks like ramipril is often prescribed twice/day instead of once. Maybe that's why nephs lean toward lisinopril? Or maybe lisinopril is less expensive? I don't really know though. I hadn't heard of ramipril before.
I don't think I'd call myself a pro at anything! I don't know nearly as much as most people here. I guess it's like that monument next door. If you've lived next to it your whole life, you probably haven't stood in front of it to read the inscription. It's just always been there; you see it, you know it's there, but you mostly ignore it. I do know I'm very fortunate to have had such a slowly progressing disease. I was diagnosed when I was 9 years old, in October 1972. Other than taking meds and the psychological effects of a lifetime of living in limbo, I've been able to live a "normal" life for the most part.
Wii is separate from Xbox and PS3. I think the others might also have fitness games for them, too, though, if you have one of them already. I didn't do a lot of homework before I bought my Wii, so I can't tell you much about the others. For the Wii, I bought EA Active and Wii Fit. The Wii comes with a sports package that includes things like bowling, baseball, golf.
Wii Fit and EA Active use a balance board (about a 1-foot by 2-foot platform) that you stand on to do some of the activities. The balance board uses your weight distribution to give you feedback about how you're balancing your body.
Wii Fit has balance, yoga, aerobic, and strength-training exercises with an on-screen indicator to let you know if you're leaning too far to one side or the other, or leaning forward or backward too much. It also includes a built-in scale to let you set goals and measure your progress. The exercises are gentle compared to EA Active and some of them are fun, like juggling, flapping your arms to fly from pedestal to pedestal, an obstacle course, inline skating, step aerobics, using a hula hoop, riding a bike (it's really jogging in place). I haven't tried them all yet. You pretty much choose the individual exercises you want to do and there are a lot to choose from.
EA Active has a 30-day challenge program that I love/hate. It has a set of routines that it walks (runs / tortures) you through for a 30-day program, increasing the intensity and changing the exercises a bit every day. It has you running, doing lunges, squats, arm stuff with an exercise band, etc. The routines are about 1/2 hour each day.
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Forgot to add, my creat is 2.24 and Bun is 36. Not too bad I dont think. They are not bouncing around, they are just very slowly rising.
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Good news is that this is probably the worst it will look! When will you get the staples out?
Staples are out and healing continues but it still feels like a creature crawling around on my arm... and yes the tape was a real pain, my wife is a nurse and she just ripped it right off and said "don't be a baby" but i still love her... :2thumbsup;
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Aren't nurses wonderful? LOL!!!! I know you love her. Be grateful you have a nurse for a wife, I would love a Dr. for a husband. ( I think )
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I bet before she ripped the tape off, she said, "This won't hurt a bit!" Nope -- didn't hurt her! LOL! I like the fast, get-it-over-with approach myself, too, though.
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I bet before she ripped the tape off, she said, "This won't hurt a bit!" Nope -- didn't hurt her! LOL! I like the fast, get-it-over-with approach myself, too, though.
Well i did not like the get-it-over-with way i was pulling slowly and she stepped in and "RIPPED" and it was over. My wife is a 2nd year nursing student and will finish next year then be a LPN. I think i'm gonna need her. She has really stepped up and she is into her 50's going back to school just to take care of little ole me.. Woman are the best...
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Urp.
[dread]I have a neph appt later today.[/dread] I had my bloods taken last week, and no one has called me to tell me that my potassium is dangerously high all of a sudden or that my kidneys are about to implode, so I'm hoping that I might get a reprieve. It has been really cold and icy here, but in the past couple of days, it has moderated a bit and the ice is gone, so I am more confident about going out for my daily walk without the fear of slipping and breaking my butt. I figure if I can walk each day and not throw up or grow a second head or some such bizarre thing that my neph won't be insisting that I start D, which is all I care about. I have absolutely no idea how my other numbers will be, and that's the part I hate. I just never know what to expect.
I have some questions about dialysis modalities (ie NxStage and/or nocturnal) that I have been putting off asking because I tend to weenie out, but this time I will try to get some answers.
I've now decided that if I get a reprieve, I will treat myself and DH to a nice dinner out. After the anxiety of these appts, the last thing I want to do is faff about making dinner.
Anyone else have pre-D appts coming up? God, I hate these things, I really do.
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I've got my first checkup next week since this whole thing started for me about 4 months ago so I'll start to see how much my kidney's are declining at this stage. I've been getting my blood pressure down to the 110-125/70-80 range so I'm happy about my progress there. I've been OK about the low protein and even better about low sodium in the diet. I've also been working out stenuously pretty good. Ever since RightSide posted about how much sodium I can lose like this I've been especially appreciative of how much I sweat during my workout each day (a whole lot).
I hope everything goes well with your appointment, MooseMom. You've been doing a great job taking care of yourself and you're feeling good so I think you'll be having that nice dinner out.
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I'll be very interested to hear about your appt. When next week will it be?
I have been doing the neph thing for over 6 years now, and I had never missed an appointment until this year. I have missed THREE appts this year! The first one, I couldn't drive to it because I had just had gallbladder surgery. I could barely move. The second one, my mother died that morning. The third one I just rescheduled; it happened to fall on the day that they were having a ceremony at the city to commemorate my husband's 20th anniversary working there, so I had to go to that! I rescheduled the appt for today, and last night I was feeling snotty; this morning I awoke with a full-blown cold complete with chills and low-grade fever, so my husband called and cancelled for me. Thing is, though, that on each occasion, I'd already had my blood work done, so the neph can just send me a copy or call me if he thinks I'm dying. ::) Hopefully I can get through the day today without any phone calls, although my DH did leave a message asking what I could safely take for my sniffles, so maybe they'll call about that.
Achoooooo! :'(
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I'm sorry you aren't feeling well. It's kind of funny in a way to cancel a Dr appointment due to illness! When is your new appointment? I've never canceled / rescheduled because sometimes it's hard to get a timely appointment in the first place. I have to schedule them at least a month out to be able to get in.
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I've seen my neph on a regular basis...every 2-3 months for years now. The other times I've had to cancel an appt, the nurse just sends me a copy of my labs (she knows I've kept them for all these years) and a new lab order for next time. So far, these appts have been to just review my labs. I know I'm not sick enough yet to have to start D, and that's all I care about, really. Anyway, once I get these bits in the mail, I'll call to schedule my next regular appt for 2-3 months from now.
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good luck there MM i have my reprive so you shall have yours also.... I just know it.. Hang in there.. i posted my pic in the members picture thread, don't be scared :laugh:
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You've seen you neph a lot! I had appointments twice a year up until a couple of years ago, then three times a year, then four times a year, and now it looks like it'll be every two months. I keep forgetting to ask the lab if they can send a copy of the lab results directly to me at the same time as they send them to my neph.
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You've seen you neph a lot! I had appointments twice a year up until a couple of years ago, then three times a year, then four times a year, and now it looks like it'll be every two months. I keep forgetting to ask the lab if they can send a copy of the lab results directly to me at the same time as they send them to my neph.
The lab sometimes won't send them directly, but the neph's office probably will. You can ask for your last 6 labs if you want to see how your numbers have changed.
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I know that you can sign up online to get your results if you go through Quest Diagnostics, but you have to have your neph agree to this. I've never seen my neph use a computer...every time he sees me he makes some remark about how many trees have given their lives so that they can live in my file. ::) But I've been to his office so many times that his nurse already has my copy of my labs there waiting for me when I check in.
I DID get my reprieve! Yay! GFR 18, up from 15 last time, and creatinine down to 2.71 from just above 3. It doesn't mean that much...it's just a snapshot of what my kidneys were doing on that day, but it DOES mean that no one is talking dialysis for the next couple of months. The nurse called me with my results, and she didn't mention any other numbers, so I'm going to allow myself to assume that nothing else is glaringly amiss.
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Congratulations on your reprieve! :cheer:
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I DID get my reprieve! Yay! GFR 18, up from 15 last time, and creatinine down to 2.71 from just above 3. It doesn't mean that much...it's just a snapshot of what my kidneys were doing on that day, but it DOES mean that no one is talking dialysis for the next couple of months. The nurse called me with my results, and she didn't mention any other numbers, so I'm going to allow myself to assume that nothing else is glaringly amiss.
That is awesome, MooseMom! Those numbers are fantastic and surely show you are doing a whole lot of things right. Enjoy that dinner - I'm so happy for you!
As for my appointment, next Thursday, though I don't have an order for blood work yet so it'll be another couple of weeks until I really know anything. We're just starting to settle into a check-up routine so I'll know better next time to ask for an order for lab work 2 weeks before I go in. I would simply move my appointment right now to after my labs except I have some other things to talk to the doctor about - namely some sharp pains in my stomach I have occasionally. I get the pain sometimes when I eat, and they tend to be very brief. Everything else seems OK so just not sure what's up...
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I wish I could take credit for doing things "right", but I'm not doing any thing any differently. It's entirely possible that my next labs will show gfr 15 and creatinine back up to 3...it all seems so random. I can take my meds and eat properly and so have a modicum of control over things like blood lipids, K and PO4, but there isn't really anything that can be done specifically to improve gfr and creatinine.
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I would say for us, stability or slowing the decline is darn good news! I know that's what I'm hoping for. I know any "improvement" isn't really improvement but I'll take that as a positive sign - especially over a large decline in GFR or increase in creatinine. I don't think you give yourself nearly enough credit, MooseMom. The fact that you do monitor and control your food intake I believe has and will continue to heavily impact your overall health and slow the decline of your kidney function. If nothing else, it makes you healthy in spite of your kidneys, and makes sure that you aren't one of the many unfortunate that don't even make it to dialysis/transplant due to deadly complications arising from declining kidney function. Face it, MooseMom, you rock.
:2thumbsup;
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told you so!!! MM
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told you so!!! MM
So you did.. :P
Kim, don't get me wrong...I won't diss "stability" or "slow decline"! Last year, I had to see my PCP (who is in the same practice as my neph) for non-renal related matter, and he told me that I was lucky that I still had any kidney function at all. I got all over him for that...I told him that "luck" had absolutely nothing to do with it, that anything that appeared "lucky" was the result of vigilance and damned hard work. I still can't claim to do anything that specifically slows the decline of my renal function, but I DO do a lot to keep the side effects of CKD at bay, ie my diet and my mountain of pills and a good amount of exercise.
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I got my full lab results in the mail today, and I will happily yet humbly accept all congratulations for having phos and potassium levels WITHIN NORMAL RANGE. :yahoo; :yahoo; :yahoo; I've worked really hard to make that happen. I'm off to have celebratory sip of Coke!
OK, who else around here has an appt coming up soon? Anyone need some encouraging words or a bit of support or maybe a sedative or two?
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Before I started dialysis, that time between the blood tests and the actual visit to the Nephrologist to hear the outcome was utter torture. In some ways, the anxiety of not knowing and anticipating dialysis is so much worse than actually doing it! Somehow, sometimes, the agony of what is one's mind is greater than the actual expereince.....! or maybe I'm just a control freak!
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Before I started dialysis, that time between the blood tests and the actual visit to the Nephrologist to hear the outcome was utter torture. In some ways, the anxiety of not knowing and anticipating dialysis is so much worse than actually doing it! Somehow, sometimes, the agony of what is one's mind is greater than the actual expereince.....! or maybe I'm just a control freak!
Well, if that makes you a control freak, then I guess I am too because waiting to hear those results is soul-destroying.
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So fantastic to hear your labs were great, MooseMom! It's peanutbutter jelly time! :bandance;
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Oh no...it's that time again. Nephtime. Got an appt coming up. Can't find my Xanax... ::)
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Likewise it's time for me too. I'll be home doing my 24HR urine test tomorrow and getting all my labs drawn on Friday. I've been pretty good overall so I'm really going with "there's nothing more I can do now - I'll make any necessary adjustments when the labs come back and I meet with my doctor." That still won't prevent me heart from practically leaping out of my chest when i get that e-mail that says, "You've got lab results. Click here to see them."
I'm sorry you can't find the Xanax, Moosemom. I hope you're able to give yourself credit for being vigilante and taking good care of yourself and it helps soothe you during this time. Otherwise, I hope you find the dang Xanax! I may have to "borrow" a couple of Xanax from my dog next week (yes, she has a prescription for them) if I work myself over my lab results or my hypochondria takes over again I end up thinking I have ebola or something like that.
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Good luck to you both.. :grouphug;
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I am pleased to report that I do not have ebola.
Other than that, my labs came back pretty much as they did last time...no significant change. Creatinine 3. Egfr 16. Red blood cells ever so slightly below normal, but hemoglobin and hematocrit within normal range. Potassium 5.4 which is the merest hint above normal. Neph didn't have much to say other than he had a new granddaughter. If that's the main topic of conversation with my neph, then I'm happy.
Did find the Xanax and did take one. I got to the appt without going batsh*t crazy, so I guess it helped. When I checked in, I asked to have my copy of my results as per usual. They were not in my file. At first I was just annoyed at the incompetence, but the more I thought about it, the more I thought, "Oh my God...my results are so bad they don't want me to SEE them! Maybe I DO have ebola!!!" :o :o :o
I think I might have to have a little lie down; the relief (at least momentary relief) has made me just want to go to my bed. ::)
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I am pleased to report that I do not have ebola.
At first I was just annoyed at the incompetence, but the more I thought about it, the more I thought, "Oh my God...my results are so bad they don't want me to SEE them! Maybe I DO have ebola!!!" :o :o :o
:rofl; That was awesome, Moosemom. I'm so glad you got to talk about his granddaughter, that makes me happy too. Great job with keeping the labs looking good. :cheer:
I'm home today doing my 24HR urine test doing some work and trying to figure out Facebook. I go in tomorrow for the big blood draw (I think we're running 5 blood tests). Is it silly that I ate a little extra protein today (an extra egg white) just to see if how much more protein I might pee out? I think so... :urcrazy;
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oh moosemom, i hope you got some rest and peace in your mind :) Mine ( whats left of it ;) ) is really on the fritz right now so have even been staying off the boards as i cant form a complete thought too well.. We are loving home D i can say that, but for some reason, im just tuckered out, or goen like crazy..lol Im glad your 'bloods' are holding and with your care of yourself, you just may be able to hold it down.. Sending hugs, and misses of chatting here.
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Aguynamedkim, you do make me laugh! Good luck on your tests, and make sure you report back.
boswife, I know you have a lot on your plate right now, so thank you for taking the time to respond. Trust all is well with you; you sound busy but happy!
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Moosemama glad that your blood work is holding steady!!! phew!
Kim hope the urine collecting gives a good report...let us know how the appt. goes!!
xo,
R
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Well, I turned in my urine sample this morning and the only issue was that I put in just slightly over the markings on the jug - basically a little over 3 liters. :o I came awefully close to simply not having enough room. I've been drinking more in an effort to lighten the load on my kidneys but I didn't realize it was 3+ liters. The nurse was concerned that the lab results might be slightly skewed because they "max" out the input at 3L so my protein concentration in my urine will be reported as being higher than it really is. I told her that we'll take a look at the results and if I feel I need to retest (and drink less water) than I'll do that. I don't think it was enough over that it's going to skewer my results too much. They took their 2 big tubes of blood for all the tests and now...the waiting.
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Kim, when will you get your results?
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Results should be back this week - I'm guessing towards the end of the week. In the meantime, I get to distract myself by doing taxes! :Kit n Stik;
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I got my results and it looks like I'm holding relatively steady (a small increase in Creatinine of .04). I'll just keep my data so I can track it over the long term. All the other tests in the comprehensive metabolic panel were in normal ranges. My urine test put my protein, creatinine clearance and creatinine within "normal" ranges (versus the 1+ protein I had when I first started this). I attribute the tests coming back within "normal range" to a low protein diet (not improved kidney function). It looks like the 30-40 grams of protein I'm taking in are keeping my serum protein high enough for now, though those numbers did decline slightly. The only test the doctor expressed concerned about was my low HDL level. I work out 40+ minutes a day, 6 days a week. Not sure what else I can do to raise it. At least total cholesteral was way down (to 154). I'm thinking my diet has played a huge part in that along with the fish oil supplements I've been very good about taking.
All in all a good set of labs in light of my desire to keep the disease progression as slow as possible. Thank you all for your support. :bow;
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A side note on HDL. I've already got the no smoking, exercise 40+ minutes a day down. I don't think I want to eat oily fish, salmon, cheese and nuts due to the high protein content. It's possible that one of my problems may be my very low fat diet (many days it's ultra-low). I haven't missed the fat, to be honest, I've just naturally removed it from what I cook for myself. The other is that I stopped drinking alcohol in moderation. I'm reading more and more how high HDL levels are far better for you and that they can overcome high LDL levels by returning more cholesterol to your liver than the LDL can deliver to the body. So time to eat monosaturated fats and drink some wine.
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I take it the results came back negative for Ebola... :rofl;
Great news!! I'll bet you're relieved!
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I take it the results came back negative for Ebola... :rofl;
Great news!! I'll bet you're relieved!
:rofl;
Yes, I forgot to tell you about that! Totally negative for Ebola!
:rofl;
I'm definitely relieved and happy with steady state thus far. I saw the doctor and she said she's more concerned about my low HDL than my kidney function as this point - especially since my LDL is still high. She agreed that my fat was too low in my diet and that moderate drinking could be good (though I have to be careful not to aggrevate my gastritis). Also going to try to lose more weight (only 20 pounds to go after the 55 I've lost so far) as well as fit some more soluble fiber into my diet (oat bran). She said I could look at high dose Niacin as well but that we could try these dietary changes first especially since last she recalled it was inconclusive if high dose niacin was risk factor for kidney disease. Monthly cholesterol labs while I try these things out.
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Well, yippee yay, yippee yay, it's that time again that we all love so much! Lab time! Yep, gotta give a blood/urine sample this week for my neph appt 7 July. Gosh, this gets me into such a piss-poor mood. I find I just get angry at the world, resentful of this horrible intrusion into my life. My husband stuffs himself with ice cream, chocolate and bananas while I do the mental calculations on how quickly that particular combination of foodstuffs would kill me. ::)
I hate this disease, I really do. I don't care about the diet, and I am used to the pills. It's the anxiety that I find to be so punishing. I don't think I will ever really come to terms with it. And I feel so alone in my battle. My husband works hard, and when he gets home he usually sighs contendedly about how good it will be to have a nice, relaxing evening at home, which I, probably unfairly, read as code for, "I don't want to hear about your scary kidneys; it's not my problem." So I tell him nothing.
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Hang in there Moosemama.
I hope you can stave off D for a bit longer...
xo,
R
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I hope your labs are uneventful, but as Goofynina always used to say: Hope for the best but plan for the worst. You're as prepared as anyone I know. I hope you know you can lean on us. We want to know EVERY detail of your appointment! You're not alone, you're STUCK with us!
:grouphug;
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oh MM, :cuddle; I wish this was all easier, and mabie it will be once you are actually on D ??? i (of course i hope thats not for a LONG time of which i want for you to enjoy this time and not worry till ya got to worry :( ) You'll see it's not so bad actually, and then, hopfully before you know it, you'll have a very successful transplant . Or,,,,,,,,mabie you'll go in and they'll find you havent advanced at all, and your worrying for not. If only 'us' worryers/anxiety ridden people, could just do this all without the danged anxiety, it would be a whole lot simpler. I mean, we both learn all we can, are prepared and all, but it's the anxiety that *hurts*. When we were doing our nxStage classes, my chest hurt so badly i was quite sure i would end up in the hospital with a heart attack. Not being dramatic either. It hurt that bad!.. Then bringing it home, well, once again, even worse. Mentally, i felt confident enough, but my anxious heart had a hold on me that i couldnt shake. WEll, ya know what, it passed (WAY slower than anyone else in the universe) and it's easy peasie now and i wonder how in the heck i made such a big deal of it. What im saying is, I wish you peace with it all Moosemom. I wish you didnt go through this crap/anxiety part of it as i know THAT part all too well. Your going to be ok how ever those tests go, and you have us :) I wish the most wonderful outcome for you, and i wish you PEACE with what ever comes of it... :cuddle;
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Urp, well, it's just after midnight, and I have my appt today to get my latest results. I don't feel any different, but I know that doesn't mean much. I swam for an hour today, and more often than not, I walk between 2 and 3 miles a day or do something else by way of exercise, so I'm figuring that this means he won't stick me on D just yet. But I am haunted by the memory of the day I was returning from my virtuous long daily walk and hearing the phone ringing indoors; it was the neph's nurse all a-flutter with the news that my K registered 6, which was rather alarming. ::)
I know I'm not the only pre-D person around here. How about you, Jean...when's your next neph's appt? Anyone else looking forward to a similarly joyous day? ::)
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MM, I'm crossing all appendages for you today and hoping for the best outcome for you. :grouphug;
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Any news. For us?
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i used to be real patient... but not so much anymore.. Sooooooooo, whats up MM??? dont need to keep us hangen now do ya??? :cuddle;
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any news Moosemama? thinking of you!
xo,
R
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Well, it's not quite time for D yet, but the rest of the news wasn't all that great. I'm not ready to talk about it just yet, but thanks anyway for asking.
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Im sorry MM, here when your ready though. :grouphug;
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Thinking about you, Moosemom. I'm truly sorry the news wasn't all that great but I'm awfully grateful that you're hanging out here with us and helping us all along. Whatever may come, you've done a great job doing what you can when you can and that's going to make all the difference in you continuing to be relatively healthy along with dealing with any challenges that may arise. I'm so proud of you and honored that you are my friend.
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Just saw this thread MooseMom. I hope you do not need to take any kayexelate (sp?) for high K
Sorry I had that milkshake in front of you too.It seems from reading that the slow progression of being put on D is harder than being told in the ER that you have renal failure and yu can't go home and that you (well I) need to have dialysis soon. Two ends of the spectrum and I realize you are having a tougher time than I did.
I have no uplifting, smart :sir ken; remark to give to be uplifting at this time tho.
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I have no uplifting, smart :sir ken; remark to give to be uplifting at this time tho.
Well, that's just not good enough. :P
Don't worry about the milkshake. The last time I had a milkshake, I was probably 8 years old. I'm just not a fan, so that's one food group that I really don't miss in the least.
My K isn't high enough to take the med you mentioned. I do, however, take 8 sodium bicarb tablets a day to combat acidosis which can elevate K, so I am being treated, but just not with the yucky stuff.
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:cuddle;
xo,
R
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I remember those pills, I had to take them briefly while on D. Still better than drinking kayexelate :puke;
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It seems from reading that the slow progression of being put on D is harder than being told in the ER that you have renal failure and yu can't go home and that you (well I) need to have dialysis soon. Two ends of the spectrum and I realize you are having a tougher time than I did.
You know, I really appreciate this sentiment, I really do. It's not a contest; it's hard for anyone who has lost their renal function, whether it occurred quickly or slowly. But I just wanted to respond to this because yes, it IS hard, and I appreciate it that someone recognizes that. I was diagnosed 20 years ago, but it has been the past seven years that I was told how bad my kidneys were, so for seven very long years, I've been struggling with this. It's a peculiar kind of hell.
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I would never call this a contest...lol Contest are meant to be fun I thought.
However this is an observation I realized when I read your post last night. I thought at the time I had it rough, but hind sight say's otherwise in the long run.
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I was diagnosed 20 years ago, but it has been the past seven years that I was told how bad my kidneys were, so for seven very long years, I've been struggling with this. It's a peculiar kind of hell.
Yup, been there. That long slow slide, where the best news you can hope for is that you haven't, for the moment, gotten any worse.
By much. Mostly. You hope.
It's constant stress, and a constant fight to re-adapt your "normal" to something that is constantly changing for the worse.
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It seems from reading that the slow progression of being put on D is harder than being told in the ER that you have renal failure and yu can't go home and that you (well I) need to have dialysis soon. Two ends of the spectrum and I realize you are having a tougher time than I did.
You know, I really appreciate this sentiment, I really do. It's not a contest; it's hard for anyone who has lost their renal function, whether it occurred quickly or slowly. But I just wanted to respond to this because yes, it IS hard, and I appreciate it that someone recognizes that. I was diagnosed 20 years ago, but it has been the past seven years that I was told how bad my kidneys were, so for seven very long years, I've been struggling with this. It's a peculiar kind of hell.
It is like walking a tight rope...you are using all your inner and outer strength (physical and emotional) to stay on the rope, but you know eventually you will fall off. It is like living in limbo...not sick enough for D, but not well enough to put it out of your head completely. living hell...agreed!
xo,
R
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Yes,I knew you all would get it. Usually one goes to the doc to get better, butnot in this case. You go just to see if you are getting worse. You never really get significantly better. I think my husband is finally coming to terms with that. He no longer says "Everything will be ok" before my appointments. That always really annoyed me because it was rarely true.
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:cuddle;
Holding your hand in cyberspace moosemama!
xo,
R
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Had another "second opinion" visit last week. The only new questions were whether I'd ever traveled extensively in tropical areas. Well, I did spend a week at Fort Myers Beach last March, but that didn't count.
She seemed slightly disappointed as she's looking for a cause of my idiopathic disease. I'm starting to call her Dr. Sherlock Holmes. As part of that quest, and to see if I'm treatable or not, she's schedulaed a renal biopsy for next Tuesday. Had one when I was dx'd with membraneous nephritis a couple of years ago. No big deal, really, except for the permanent marker tats I got on my side which my kids thought were really cool tribal tats. Couldn't really scrub them off due to biopsy puncture, so they were there about a month.
Doctors don't like "puzzle" patients where is answer is still "medical science doesn't know".
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The biopsy was an all day affair. Four hour wait, post fully-conscious biopsy, to make sure I wasn't bleeding to death. And only the smallest mark from a marker so I didn't look "tribal" this time. Much different to have biopsy with only local anesthesia. Felt fine afterwards until I learned I had to stay 4 more hours to get clearance from lab on urine and blood tests.
BTW, I enrolled in a genetic study where samples are being analyzed, my DNA is being analyzed, with the hopes of learning the cause of CKD generally. Still eligible as I'm not on dialysis yet, don't have polycysitic disease, and I'm not in jail (no kidding--you're ineligible if you're in jail). Maybe it will do somebody else some good some day. All I have to do is donate a urine and blood sample (35cc's) every six months. That's nothing--my nephro takes blood every 2 weeks or month, depending on when I see him.
The best part? I got to see the samples in preservative -- looked sort of like a mini tequila bottle with several mini worms in it.
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Malaka, re the genetic study, that is just so cool. Would you mind terribly posting some details about who is doing this study because it strikes me that maybe I could be a candidate if that would be useful to someone. I'm pre-D, have no polycystic disease and am not in jail (although I could be faking you all out and be writing this from my cell... :P), and if my DNA could help someone find a cure/cause for CKD, I'd be thrilled.
Let us know what the biopsy shows; I'm really curious.
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The study description is somewhat vague. Its out of University of Michigan. And they will b analyzing samples
for genetic markers that point to various CKD's. I don't know why they aren't involved with polycysitc kidney disease, but apparently they are happy to take on all other diseases. Actually, most of the descriptlon was about how they keep patient identities secret, Big deal. I'll bring the literature in next week and post a few quotes from it.
Biopsy results won't be available for at least 5 days. I suspect the results will go to my nephrology consultant who may or may or portent further treatment for me. My treating nephro has been talking a chemotherapy agent or some newer drug (forget the name) that costs $1000 per mot. Lke anybody can afford that from pocket change. If they want to give it to me as part of a study, I'll take it.
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I am assuming that they are not including polycystic diseases because they've already discovered the genetic markers for those. But we have to remember that "genetic" doesn't necessarily mean "hereditary". For instance, I have fsgs, and while there is probably a genetic marker for that, it doesn't mean that it is an inherited condition. I don't know anyone in my family who has had it.
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I am involved in a DNA study too, but they only took blood samples and a urine sample ad do not need to return. If I still have the brochure MooseMom, I an post the information or I will pick up another brochure whe I go back to Northwestern on the 27th.
I have een involved in a couple research studies, they are free and sometimes great to see results. There is a website that list all the research projects associated with a certain hospital that I have saved on my old pc and possibly have an email from the group.
As far as biopsies, I have to be out. The first one I had that was on my liver was very unnerving and very uncomfortable. All others that were on my kidney were under anesthesia while I was in the hospital. What I have learned over the years is if you are going for a procedure or a big test, expect delays and to stay there most of the day.
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My "second opinion" nephro called yesterday all excited that I was in the study because my case is "puzzling". Biopsy showed scarring rather than inflammation (so not amenable to treatment) but I have (are you ready for this????) eosinophils which MAY indicate inflammation due to drug reaction. The disease, pending electron microscopy, resembles interstitial nephritis under a normal microscope. She wants to blame a heart drug called flecainade but lacks evidence to do so, and I started with kidney decline long before I started taking that drug.
Anyway, guess who needed another blood test today?
I took notes, but couldn't read my own writing. Chevy-Strang disease???? I hope Google can correct that one!
Maybe I'll become famous after all! Not the way I wanted to, of course, but famous in medical circles. Sort of like Lou Gehrig's Disease. HaHaHaHa
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Well, you're famous here on IHD, and we're the only ones who really count. :P
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Churg Strauss Disease. Not a good prognosis, but I have not been formally diagnosed with that, so why worry?
Interstitial nephritis hasn't been ruled out, either.
Waiting for the electron microscope pathology results. Ain't gonna stop me from getting the fistula on Friday in any event. Isn't "Be Prepared" the Boy Scout motto?
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I haven't looked at this thread for a long time. Malaka, did you get a diagnosis? MM, I'm glad to see your husband is coming to terms with your disease. While I know he cares about you, he can't offer you full support for something he hasn't accepted himself.
I saw my neph earlier this week. It was mostly a good appointment, but she freaked me out a bit, too. My labs came back great. I've been on Sensipar for a few months now and she said my PTH is just where she wants it. Potassium, phosphorus are within normal limits without dietary restrictions on them. No binders yet. My creatinine level has barely budged since January. My eGFR came in at 16% (I thought it was higher! That was one of my freak-out moments).
My other freak-out moment was that she asked if I'm still working full-time and offered to put me on disability. I rejected the idea, but it threw me for a loop that I'd even be eligible for disability.
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Deanne, there's always something that will freak you out in one of these appointments. And it's usually something you don't expect.
Funnily, I'm not on sensipar yet but I am on binders. When the neph wanted me to start binders, I felt really upset because it was one more step closer to complete renal failure. But once I actually started taking them (and they aren't as big as I had imagined, so that was good), I was grateful that there was some way to rid my body of extra phosphorus while at the same time protecting myself from having too much serum calcium, so I'm OK with it.
Deanne, how high did your PTH go before you started taking the sensipar? Mine was rising, and my calcium was a little high along with my phos, so that's why I started the binders. My PTH is down (but still above normal) and so is my calcium. Would you believe that the lab forgot to check for phos? So, I don't know if the binders are lowering my phos (I've been on them only about 6 weeks), but I guess it must be working since my PTH and calcium are down.
It's all such a delicate balancing act, isn't it. I'm really glad your numbers were so "good" (relatively speaking!), but I am surprised that your neph spoke about disability. I can see where that would throw you for a loop. But then again, she's giving you that option. A lot of people with an egfr (like you and me both) are much sicker than we are.
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Sensipar kind of scared me when I started it. It was probably similar to your feelings about starting binders. I was very worried about side effects from it, too. They sounded awful. It's fine though. I don't have any side effects from it. It's very expensive! My co-pay on it is about $250 for a 3-month supply and my insurance company balks at my being on it because I'm not on dialysis yet. I think the full price is well over $2000 for a 3-month supply. My PTH was in the 300's before I started it and it's 117 now (I think - I'm going off memory. I don't have my lab report with me). I tried Calcitrol before starting Sensipar, but my PTH was still too high on it.
I always feel like my neph has my best interests in mind, so even though I don't like to think of my self as disabled/being eligible for disability, I love her for asking me about it because she's trying to make sure I have as a good a quality of life as possible.
I see stories here about people who have bad nephs and I feel so lucky! Mine is very proactive about trying to make sure my lab values are good and I never feel like she has any ego issues - when she wasn't sure about which way to go next, she asked for another neph's opinion and, another time, she pulled up medical journals and looked at them with me to decide which combination of meds might work best to try to bring my cholesteral level down a bit more. It feels a lot more like a partnership than her just telling me what to do.
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My mom spent the last five years of her life on dialysis; her renal function was destroyed as a result of surgery to repair her aorta. THAT surgery was successful, but she sure paid a price. Anyway, she had to take binders, and my God, she complained about them. She tried every binder available, and she had stomach trouble with all of them. And she would complain about how enormous they were. So when my neph told me I should start taking them, I was upset for all sorts of reasons.
They are actually no bigger than some other pills I take, but yes, they do give me the runs more often than not, but that doesn't worry me because I just picture all of the phosphorus coming out of me. :rofl;
Having a neph you can trust to do their best for you is just the biggest gift of all. It sounds like yours respects your intelligence and trusts YOU just as much as you trust her.
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Well, folks, I am finally to the point that I may switch Nephs. I have been going to him for 3 & 1/2 years now and he still will not talk to me about dialysis. When I ask he gets very angry and says, it is too early for you to have tubes and things sticking out of you. Now, no matter what I ask him the answer is always, " Stay hydrated".Cramps? Stay hydrated. Nausea? Stay hydrated. I told him that I was taking more Vicodin than usual, he never let me tell him why, just said, you need to take a stool softener every night and extra iron. I would rather slit my wrists than take a stool softener every night. The results are disastrous. On the other hand, I am afraid that if I switch Nephs, it could be worse. What to do, what to do.
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Jean,
Wow, kudos to you for putting up with that for 3+ years. You are perfectly entitled to change your neph if you aren't happy with him. After all, it is your health and well-being on the line, not his. Finding a good doctor can be hard and frustrating. Are there any other patients in your area that you can talk to to get an opinion? Or maybe discuss it with your PCP, as other docs tend to know who is reputable and who isn't. I wish you luck.
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Well, folks, I am finally to the point that I may switch Nephs. I have been going to him for 3 & 1/2 years now and he still will not talk to me about dialysis. When I ask he gets very angry and says, it is too early for you to have tubes and things sticking out of you. Now, no matter what I ask him the answer is always, " Stay hydrated".Cramps? Stay hydrated. Nausea? Stay hydrated. I told him that I was taking more Vicodin than usual, he never let me tell him why, just said, you need to take a stool softener every night and extra iron. I would rather slit my wrists than take a stool softener every night. The results are disastrous. On the other hand, I am afraid that if I switch Nephs, it could be worse. What to do, what to do.
If I remember correctly, your egfr is above 20, is that right? If so, I can see why he doesn't think you NEED dialysis, but I can't understand why he refuses to talk to you about it. You have hired him for his services, and part of the service is for him to address any concerns or questions you have, and if those include queries about dialysis, then he should answer. What is it exactly about dialysis you want to say to him? What do you want to hear from him?
I'm sorry, but I don't know why you are taking Vicodin; you probably posted the reason somewhere, but I don't know. What happens if you take a stool softener every night?