I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kitkatz on March 16, 2015, 10:51:44 PM
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I am hanging on by a thread right now.
Dialysis sucks. My blood pressure has decided to be stupid while I am in the clinic.
It is high in clinic. After my treatment is finished it is high when I am standing.
I am hating having my blood pressure taken. It hurts like hell.
I was crying last dialysis after treatment. The nurse wanted to know why, when I am crying I cannot make sense.
Everything is making me crazy now.
The dialysis clinic doc gave me Ambien to help me sleep and be calm. Took it first time the other night. Nurse blames the Ambien.
No, I leave the D clinic lately very close to tears.
I do not feel good. All i can do is get out of bed, get on my computer, and then take a nap.
My days and nights are mixed up. I am not sleeping well at night.
I am waking up with a killer headache every morning after D.
I have no reserves left.
I had fistula surgery a few weeks ago. My arm hurt for three days and surgeon gave me nothing but Tylenol. I was in tears for three days.
In January I fell across the dialysis clinic floor and wanged the heck out of my left knee and leg. Luckily nothing was broken, so still healing from that fall.
I feel like I cannot take anymore. I am not a quitter, but enough is enough already.
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Dear kitkatz, I am so sorry what you go through...
... and I am wondering whether your symptoms could be created and exacerbated
by the artificial ultraviolet lighting in your dialysis-centre ?
... The symptoms you describe sound to me like "typical" symptoms of photosensitivity,
expecially the BP-fluctuation, your terrible headaches, depleted reserves etc..
Please try and use during your next dialysis-session one of the isolation rooms and turn the artificial light off.
Could it be that the ultraviolet artificial light in your centre has accumulated over time and gives you now these terrible symptoms ?
I am thinking of you and keep my fingers crossed!
All the best wishes from Kristina. :grouphug;
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KK, this post has left me feeling very sad and I wish there were something I could do besides sending you a hug and my hope that things feel better soon. You are the definition of a dialysis warrior and you deserve to feel better than this. xxxooo
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This makes me cry. :cuddle;
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I am so sorry. That you are so desperately ill and yet supposedly under medical care is just wrong. My Mom had that same hopelessness during her dark dialysis days. Wishing you some light, sending you positive thoughts.
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Please get better, I intend to do a good deed and will try to send the good karma to you. You are too important to too many people, so like tinker bell we should send good thoughts and deeds your way to help.
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Kitkatz, I am so sorry you are suffering. I wish I had a way to cure you. We are here to support you. When you are hurting, close your eyes and try to feel us all holding you up. :grouphug;
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This site is called "I Hate Dialysis" for all of the reasons you've outlined in your post.
It is all so unfair, and I am very angry on your behalf. I am upset that you are suffering in this way.
Feeling like enough is enough does not make you a quitter. It makes you human.
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I'm so sorry to hear this. I know when my wife first started at the clinic, after the first week I remember her asking the head nurse as to what happens if she decides to stop dialysis. That probably was her lowest point and it truly scared me. The nurse was very empathetic in talking with her. I also talked to her primary care doc and her nephrologist about her mental state. They offered her medication to help deal with the depression, but she decided to press on. We had decided early to go to PD so we knew that the hemo side was really a temporary state.
I think the clinic setting for some is not a great environment and the nature of that kind of facility and small staff, no one really can get the kind of care that mentally they sometimes need since the staff seems to be on auto pilot. I really think that when dialysis patients get to your state, there should be a special group of people who can give you the attention and care you need. Maybe it's time to talk with the social worker at your site and see what alternatives for treatment, or even dialysis facility are available to you. Getting out of the hemo clinic where I could do her PD made a big difference. We also found her primary care doctor (who is really caring) offered her a lot of support. We see him quarterly and he never fails to talk to her about her mental state and how she is dealing with PD.
My best to you. Keep up the hope and fight. There can be better times ahead.
Jack
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Thinking of you kk.
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Wise words from Jack.
I really gets my BP up to learn you have been left in pain. We have plenty enough stress in our lives on D and for the Dr's to leave anyonoe in pain from obvious injury is totally uncalled for, way out of line.
Sleep aids, there may be a dozen meds, each works fine, for some people. Some have problems. You HAVE TO let your Dr know how the med works for you. Good, bad, or indifferent. It may need adjusting, or a different med altogether.
Never give up hope and let them grind you down. Like the rest of us, you have to make you problem known to staff. If they do not seem to listen then find the patient advocate who WILL listen to you and then take the problems to someone of authority to find answers that you need.
Hang in there and try to stay strong. We are all here pulling for you.
I'm hoping to see an updated post in the near future, telling of good progress and that you are beginning to feel a lot better.
Take Care,
Charlie B
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Oh, dear, KK.
Reading this just makes me feel sad and helpless. I am so wishing I could do something. Anything. It isn't fair. I wish I could carry some of your burden.
Sending lots of love.
Aleta
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Hope better days are ahead for you, kitkatz. Sometimes when I am really down and struggling, I just want to yell at everybody and tell them that I am tired of having to be strong and for a change, want to be weak. I know I haven't been on here very long but it didn't take much time to see that you have a lot of friends who care about you and seem to want to shoulder some of the pain for you. That is company worth keeping.
When I want to be the weak one, I think of these particular lyrics from the Superman song by Five For Fighting, kind of describes what I want to say to people.
"Even heroes have the right to bleed"
"Even heroes have the right to dream"
"It's not easy to be me"
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KK, I was thinking about when the Lyme disease really had me on my knees. I learned to drop the f-bomb with a vengeance. I found I could string 6-10 bombs into one sentence and just keep it going, just letting out the frustration. Maybe that would help you a bit.
It went something like this:
I'm so f'ing tired of this f'ing disease that keeps me so f'ing tired in in so much f'ing pain that I can' f'ing enjoy any f'ing life.
As strong as you are, I know you must have hit a pretty bad low to share it here. I'm just grasping at ways to help.
:grouphug; :grouphug; :grouphug;
Sending hugs.
Aleta
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Aleta, you are right. Actual studies have shown that swearing can help with pain.
Kitkatz, if you're tired of regular swear words, google some in other languages and use the ones you like to say.
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Take a peek at:
http://ihatedialysis.com/forum/index.php?topic=31031.msg480134#msg480134
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I'm generally pretty careful about using language. Little ears pick it up way too fast.
But there are times when the immortal words of George Carlin, may he Rest Eternally, come to mind. Those seven words you can never say on television. Most of them are regularly used on TV now, but back then......... they couldn't even hint at them or the Censors would lean on the bleep button. TV and movies used to be clean.
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:cuddle; I wish I had an answer to this.
It's so frustrating and breaks my heart that you're struggling so.
You have really fought through many years of challenges and I selfishly hope you keep fighting.
Love you KK - please call if I can help. :-*
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Thank you my dialysis family on IHD.com I still hanging in there. Took 2 ambien last night and actually relaxed enough to sleep for a few hours at least.
Woke up with the usual headache. Took my BP piils and promptly found myself falling asleep over my computer. So off to bed I went again and slept for two hours more. Feeling better today.
Sadness yesterday, we had to put my beloved dog to sleep due to liver and kidney disease. She was hurting all over and it came on fast. Her blood work at last check up in October was great.
I am lonely without her. She was my dog in every way. She changed allegiances eighteen months ago because I was in the hospital for so long. She would hang ut with him but come in to me for attention.
Dialysis was all right last night but my mood was sad.
Things have got to get better.
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Praying you get some relief and feel better. I think anyone on D can relate to that hopeless feeling now and again, and pain combined with sleep deprivation only make things worse. I still struggle with sleep after tx, and all of the recent medical issues have gotten me down. Please try to hang in there, as it usually gets better. The loss of your dog is heart breaking, too, at a time when you could really use some doggie love. I lost my sweet Miley dog a few months ago and I still miss her every day. It seems like when it rains, it pours. Hope you feel better soon and can put all of this behind you! :cuddle;
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Losing a beloved pet is almost like losing a Child. We lost Herbie, the Love Bug, the one-eyed Beagle earlier this year. He lost the eye when his previous owner took a hammer to his skull at 3 months. Because he whined all night staked our in their back yard. Herbie loved us for ten years then just lalid down one day and slipped into a coma, never to awaken. Vet told us it was kidney failure brought on by diabetes. We never had a clue. I still feel so bad that I failed him. If I would have had him tested regular we should have know and I would have given insulin same as I do myself. It really hurts more when it is our fault.
When the time is right we will adopt again. But not yet, I've still a lot of grieving to do, and have to learn to forgive myself first. That's the hardest part. I am really tough on myself, I should know better.
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I'm sorry about your furbaby! :'(
You hang in there! :cuddle;
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Losing your pet can be so hard. I am sorry.
It sounds like you really need a 12 hour sleep. Not sleeping is a torture technique and can drive you crazy. I was recently in the hospital and went almost 3 days with only 15 min catnaps because of stomach virus symptoms. Nothing they gave me helped. I was so completely exhausted and just begging them to knock me out. You must be experiencing that to the umpteenth power. I wish you sleep.
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I'm 36 and been on dialysis 4 year without a single call for transplant. I was in hospital for 5 days for pneumonia and I know what no sleep feels like. I was waking up every hour due to not being able to sleep. I wanted to die literally. It's been 2 weeks out and I still can't get more then 2 hours asleep so feel exhausted and miserable. Doctor wanted to give everyone me ambience but I told him no. I already take over 10 pills a day from blood pressure to acid reflux to now antibiotics for pneumonia and that's not including 12 binders I take. I feel u 100%. All I can tell you is that it will pass your pain your going through. It's the only thing that's getting me by. I hope it makes you feel better to know that I'm going through the same thing your going through.
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KK,
Sending love, love, love. I know hhow much it hurts to lose a fur-child. That on top of everything else. You are a warrior, though.
More hugs.
:grouphug; :grouphug; :grouphug;
Aleta
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So sorry kit, that you are feeling so miserable and so much in pain. Sorry too that you lost your furbaby. You have been tough and strong all of this time, so it's okay that sometimes you just let it all hang out. You have the solid support of your entire IHD family, and that is a LOT!!!
Get better
Love you
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KK, I was thinking about when the Lyme disease really had me on my knees. I learned to drop the f-bomb with a vengeance. I found I could string 6-10 bombs into one sentence and just keep it going, just letting out the frustration. Maybe that would help you a bit.
It went something like this:
I'm so f'ing tired of this f'ing disease that keeps me so f'ing tired in in so much f'ing pain that I can' f'ing enjoy any f'ing life.
As strong as you are, I know you must have hit a pretty bad low to share it here. I'm just grasping at ways to help.
:grouphug; :grouphug; :grouphug;
Sending hugs.
Aleta
Tried out your idea today. The person I said it to replied "WHAT DID YOU JUST SAY!?" So I repeated it. Gotta say, it felt pretty good. Quite uplifting, actually. :shy;
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KK, I was thinking about when the Lyme disease really had me on my knees. I learned to drop the f-bomb with a vengeance. I found I could string 6-10 bombs into one sentence and just keep it going, just letting out the frustration. Maybe that would help you a bit.
It went something like this:
I'm so f'ing tired of this f'ing disease that keeps me so f'ing tired in in so much f'ing pain that I can' f'ing enjoy any f'ing life.
As strong as you are, I know you must have hit a pretty bad low to share it here. I'm just grasping at ways to help.
:grouphug; :grouphug; :grouphug;
Sending hugs.
Aleta
Tried out your idea today. The person I said it to replied "WHAT DID YOU JUST SAY!?" So I repeated it. Gotta say, it felt pretty good. Quite uplifting, actually. :shy;
PrimeTimer, the first time I did this it took my husband somewhat aback since I'm generally a pretty mild-mouthed person. But he got on board when he saw how much it helped me cope! :rofl; :rofl; :rofl;
Aleta
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Hanging be a thread.
Hanging by a thread
Looking at my life with a lot of dread.
Needing to clear my head.
Hanging by a thread.
Things that are making me crazy:
Hubby will not call our local handyman. I have a list of eight things that need doing in the house.
I cannot turn on the ceiling fans in the house until they are dusted and I cannot do it.
Every time I eat my tummy is upset. Either I feel nauseous or it goes straight through me and I am up all night.
I am starting to hate to eat anything and I love to eat.
I cannot sleep at night anymore. I am up until 3 a.m. Then sleep till noon. So yes I am getting some sleep.
I am using Ambien at dialysis just to stay calm and get some sleep.
I have no access to my car. Hubby needs to hook up its battery so I can run around on my own.
I do not feel like myself.
I hate the fu*(&ing disease and all of its fu(*&^ing crap.
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God I hate it too
I hate what it does to us as people
(I want to be the person I was before ESRF)
I think everyone does have points when they consider the future and feel like stopping...I know I have on a couple of occasions ...
I have got through them so far but I know I am only ever one crisis away...
It's not a subject that's talked about and if you express the view people tend to say unhelpful things like "don't be negative! or "you don't mean it"
Our inner voices need to be heard...
:cuddle;
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So early this morning 3a.m. the inner me speaks. Loud enough for me to hear it.
It says figure out who you are now. What you want and need? What makes you happy?
What needs to change?
So I developed a spreadsheet with questions across the top for me to answer.
I plan to sit a little everyday and think about what is on it. Write about each thing if I need to.
Find my new purpose. I taught kids and gave of me for so many years.
Now I sit and do not much.
Got to figure it out.
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Hello, I'm up too. I should call you but don't want to wake the rest of your household. Some Idiot rang my doorbell at 12:56am and my dog went wild and I have not been able to get back to sleep. Although, she is snoring away! (Bitch) (said lovingly)
Do you like crafts? Maybe quilting? Something to draw out your creative side? It makes me feel good and the time going by is useful to me. Right now I'm buying fleece material and making blankets. Not the tie ones. I crochet around the edges. They are so cute.
I think I know how you feel. What purpose do we have? You have your husband and now 4 kids. Grand-babies you want to hold. Until then get a puppy... you won't have time to think. And you will smile again.
Hope you find yourself. We love you. :cuddle;
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So early this morning 3a.m. the inner me speaks. Loud enough for me to hear it.
It says figure out who you are now. What you want and need? What makes you happy?
What needs to change?
So I developed a spreadsheet with questions across the top for me to answer.
I plan to sit a little everyday and think about what is on it. Write about each thing if I need to.
Find my new purpose. I taught kids and gave of me for so many years.
Now I sit and do not much.
Got to figure it out.
Good thinking, kitkatz!
Could there be a chance to help kids with difficulties to learn at school
and you could assist them to get "back on the road" again?
Would that not be a great idea and bring you also lots of fun?
After all, you are a very good teacher!
Best wishes and good luck from Kristina.
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Reminds me of some events in my life.
Amazing how one actually survives that which life tosses at them.
One thing for sure 'this too shall pass'.
That your quality of life rapidly improves.
http://www.thetalker.org/archives/228/the-pit-in-the-cherry-and-the-guitar/
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So early this morning 3a.m. the inner me speaks. Loud enough for me to hear it.
It says figure out who you are now. What you want and need? What makes you happy?
What needs to change?
So I developed a spreadsheet with questions across the top for me to answer.
I plan to sit a little everyday and think about what is on it. Write about each thing if I need to.
Find my new purpose. I taught kids and gave of me for so many years.
Now I sit and do not much.
Got to figure it out.
Brilliant! You are a warrior AND a problem solver. :2thumbsup;
Love you.
Aleta
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Kitkatz, your strength is shining through. You're going to get through this valley. We're here for you.
When nausea was a constant for me, i had a way of choosing food. I would stand before the pantry and fridge and think about the foods I saw. Whatever didn't turn my stomach I ate. Whatever it was. I hope you can eat better soon.
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Hey KK
I haven't been here for a while, but came in this morning and read your post. It really hit me between the eyes
One thing I have found helpful, along the lines of what others have said, is to get in the car, drive about 30 minutes out to the country, get out of the car, lean back on the bonnet and scream out all the things that are frustrating me. Hopefully I'm far enough away from anyone so that no one can hear me.
I don't let my wife come with me, sometimes there are things that she's doing (or not doing) that frustrate me as well, you need to be able to get EVERYTHING off your chest
Sometimes it works for me, sometimes it doesn't. Maybe worth a try?
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So early this morning 3a.m. the inner me speaks. Loud enough for me to hear it.
It says figure out who you are now. What you want and need? What makes you happy?
What needs to change?
So I developed a spreadsheet with questions across the top for me to answer.
I plan to sit a little everyday and think about what is on it. Write about each thing if I need to.
Find my new purpose. I taught kids and gave of me for so many years.
Now I sit and do not much.
Got to figure it out.
You might be on to something with that spreadsheet. I use to write letters to people but then never send them. Well, once in a while I would. Someone said handwritten letters are kind of a lost art but that's beside the point. Writing lets me get (good or bad) things out. Whether it's in a letter or just some chickenscratch on a note, helps me to get things out. Another thing I'd do was make handmade bags and fill them with things for kids at an orphanage, along with buying and collecting shoes, clothes and toys for the children. At first I thought I was providing for only a few kids but the list turned into 80 kids. Couldn't fill that list all myself so I employed the help of coworkers and literally overnite my desk was overflowing with donations. Humans can sometimes be amazing people. Anyways, your spreadsheet reminded me of something I should get back to doing.
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I finally figured out from my writing things out, I am trying/struggling to get out of that survival mode I have been living in for the past years since I had major league infections and surgery.
Some of you will say : "Well duh!" Trying tog et back into life an do things and think right has been a struggle for me. I am still working on trying to discover the true me.
That was the good news! Now here goes...
I saw my internal medicine doctor yesterday He says we will be seeing more of each other. He thinks my cough may not be allergies and asthma so is investigating fluid overload and possible heart complications. So an echocardiogram next week and I see him in three weeks instead of six months. At least I had the brains to consult him.
The kids took me to a live WWE event last week and we watched Wrestlemania on Sunday. I have the Barry Manilow concert ticket sin hand for April 14th at Staples center.
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The echocardiogram should answer some questions for you. My mother was diagnosed in her late 50's with congestive heart failure. One side of her heart was enlarged, causing her to have a little cough, which they said was actually fluid building up/backing up in her lungs. And then one day, she had some neck pain, nausea and a "silent heart attack", which was revealed by an EKG. They called it a "silent heart attack" because some people, particularly women for some reason, don't always have the obvious classic symptoms of a heart attack, such as chest pain, clutching your chest and falling to your knees, etc). Anyways, they thought her heart may have been damaged by a fever caused by a virus since she had gone so long in life symptom-free (opposed to being born with it) but they said it would be impossible to ever prove. SO...she was put on various medications, such as water pills to help lighten the workload of the heart and Coreg, an old heart medicine that has been around for ions but usually used short term following a heart attack however, in her case, the cardiologist, who happened to also be a heart transplant specialist involved in studies of Coreg, proved that long term, Coreg actually helped to strengthen the heart. Long story getting longer....my mother had to take a lot of pills but felt so much better, the woman had more energy than I ever did, she lived many years being active and fit, no one would have ever guessed that she had congestive heart failure. And she didn't die from it. That's a story for another day...
My point, maybe while you were in the hospital you picked up a bug or it was one of those "major league infections" you mentioned and it did damage but maybe they can pinpoint the problem and prevent further damage. Like in my mother's case, the meds strengthened her heart and in turn, it was like she was given a second chance at life and she ran with it. Literally.
Sheesh, you certainly have been thru a lot! Glad your writing has helped, altho right about now, if it were me I'd probably be writing a lot of cuss words. Ah, a Barry Manillw concert would be A LOT of fun! Maybe that's part of the "true you"....a Manilow groupie!
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Hello kitkatz,
I am so glad that your health is going to be sorted with further medical investigations underway.
I do hope, that an easy treatable medical way forward is being found for you soon !
I also had an echocardiogram recently and it "only" took 1¼ hours, but it was very precise
and the time spent on it was worth the results !
I wish you good luck and all the best,
Kristina.
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I would never say Well Duh to you. Dialysis is hard and you have gone so many years. You're just doing the best you can like all of us.
That's good you saw the cardiologist. And at least Echos aren't painful. I rank tests in order of how much they torture me. I'm sure you've had one before. I'm often drifting off to sleep. Last time my tech looked like he was about 17.
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Line insertions and biopsies come pretty high on my list of tortures... >:(
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I've been traveling and out of the loop. Oh, KK, Barry Manilow sounds divine! :beer1;
I hope the other cr@p can be sorted out.
Sending you hugs.
:grouphug; :grouphug;
Aleta
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There are so many people who are sending you well wishes as am I. We are blessed for those who understand. Maybe you can help me. My mom is just as http://ihatedialysis.com/forum/Smileys/classic/cry.gif as you. I've tried to comfort her. We talk, we laugh, we cry, we pray...but you know what's like. Would you write something to her? Her name is Dawn.
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I have the test results of the echocardiogram from my internal med doctor. Pulmonary hypertension and a sticky heart valve.
Consults made with pulmonary doctor and cardiology doctor follow ups, then off to see the internal med doc to put it all together.
Should be putting things together by 23rd of April to see where we go from here.
I am down from 98 kilos to 95.2 and still pushing on the fluid. I think I have lost some weight somewhere and the fluid is staying and we have not pushed at it enough at dialysis.
We are backing my dry weight down slowly so I do not feel the cramps or low bp when I have had enough.
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I hope they can help you feel better. Too many things going on.
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I feel your pain kitkat I wish I could hug you hard and take it away. Losing a pet is very hard. But you need to grieve in your own way when you are ready. Dialysis doesn't help but it is your life source.
There are times you just want a pity party - go ahead. A good cry is good for the soul. I'll keep you in my prayers! :cuddle;
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I have gathered Missy's records together and kept first vet records and last vet records, her adoption papers from , BARC, her training class certificate and certificate from the vet and the two cards we received. Her groomer sent a card and the vet office sent a card with all the vet techs signing it. We have been with them since the time they opened in the Petsmart. They knew Missy and I from all of our visits. I have everything in a folder for now, but am going to get a shadow box and print pics off my computer and make a memory for me. I will use her collar as one border and they gave us a pawprint made of clay with her ashes in a box. So I will work on my memories of her and make something.
I also went to Target and bought a basket full of dog and cat food and made a donation to the local pet shelter in San Bernardino. They are on donations and volunteers now that the city is bankrupt. I made the donation in Missy and Cocoa's name. Cocoa I got from the San Bernardino shelter almost 28 years ago. She lived to 14. She was a loving sweet companion to my girls. Missy was my dog. I found her through the BARC organization at the local Petsmart adoption event. 9 months to a year old. Ugly as hell all legs and head, she had not grown into her body yet. She grew into a beautiful, sweet chicken hearted dog. Afraid of thunder, afraid to go the vet, shook all the way there. I still miss her. we currently have Danielle's dog living with us and she helps to fill the gaping hole Missy left a little bit.
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Dang!! Sorry about the pulmonary hypertension and sticky valve! I have had the same Internal Med doc for more than 20 years. In other words, I've been able to trust him. He once told me that it was his job to know "the entire body" and after looking over all test results, should be able to decide which type of specialist would be needed. He never steered me in the wrong direction. Hopefully your Internal Med doc will know who can get you all fixed up. Everybody hates taking pills but in this case, maybe you will just need the right medicine and not surgery. On the other hand tho, maybe surgery could permanently fix the problem or have better lasting results than medicine.
I haven't done it yet but I have the ashes of a beloved cat and sometimes think about placing them (they're in a bag) inside a stuffed toy cat that looks like him. That way, I can look at him with a little more cheer.
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I have had my inter medicine doctor for sixteen years now. He knows me. He called me today! The X-ray results were back. Congestive heart failure and possible pneumonia. Wants me on antibiotic. Well now we know why I am coughing a lung up.
No Barry Manilow concert in LA for me tomorrow night. I gave my tickets to a friend of mine who is my age. She is taking a date. I asked her to get me a program and a T-shirt or CD from the concert.
I cried. My daughter is coming over tomorrow to keep me company and take me to lunch somewhere. I have to call dialysis center and redo schedule in the morning. Damn it!
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Thinking of you hope you get to go out for a nice lunch
Haven't heard Barry Mannilow for years ... but I remember singing Mandy!!! in my youth :cuddle;
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I don't know what to say, dear KK.
I am thinking of you daily. I wish I could fly out there and fix you up a wonderful meal (or several to put in the freezer!).
Sending love.
Aleta
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So sorry to read this KK. I hope you feel better soon and the antibiotics can work some bit of magic. Thinking of you with my very best wishes.
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I hope a visit from your daughter and a nice lunch out have made you feel a bit happier.
Have you started the antibiotics yet? I hope they will help.
What will your docs do to treat your CHF?
Love to you, along with a lot of prayers and happy thoughts. :cuddle;
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Dialysis will work on pulling the excess fluid from me as much as possible to treat the CHF.
The antibiotic should kick in over the next few days I hope.
Plus- my girls who have not spoken to each other in ten years a re speaking to one another. Hurray!
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Dialysis will work on pulling the excess fluid from me as much as possible to treat the CHF.
The antibiotic should kick in over the next few days I hope.
Plus- my girls who have not spoken to each other in ten years a re speaking to one another. Hurray!
:cuddle; Hope they get you more comfortable.
Yes, having the girls speak is PRICELESS! :flower;
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B-u-m-m-e-r about the CHF. Sorry to hear that. Guess no dancing at the Copacabana for a while...Hopefully the antibiotics will dry up the pneumonia and keep you out of the hospital. Maybe your daughters are talking because they're worried that you might be crazy since you GAVE AWAY your Barry Manilow tickets. GET WELL SOON!
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I hope you can feel better soon. Pneumonia is awful. CHF can't feel good either.
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Me not going to the concert I waited on for two months and wanted to go to so badly really got Danielle worried enough to Facebook my younger sister who got a hold of my youngest daughter in Oklahoma. The girls then Facebooked each other and then had an hour's phone call at my house yesterday afternoon. Now whether it was bullshit or not it makes me happy these two are at least talking again.
I missed the concert but my daughter let me put Manilow onCD in her car when we went to lunch yesterday. I had him playing on my computer until I went to D last night.
Oh how I hate this damn dialysis and all the shit that comes with it!!!!
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I was once told by a very wise man that things bother us, any things, only so long as we allow them to bother us.
I feel or have felt every single thing you are feeling. The more I meditate on my "plight", the more it all hurts.
When I am with friends, doing something, living life - it doesn't bother me as much.
Get angry, and do not despair, the worst is death, and it stops for no one.
angroid
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Barry Manilow is fabulous! I'm so sorry. At least you can listen to your CDs.
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Update: I down from 98 kilos to 93.4 kilos, almost 11 pounds taken off in two to three weeks. Fluid overload I would guess. D doctor thinks I am losing weight and we just did not catch up with it. I am really careful with fluids and then try to take an extra kilo off in addition to what I bring in.
Pulmonary ordered Pulmonary function test and a CT chest xray.
I see cardiologist on Wednesday.
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I hope taking that fluid off helps you. It's great to have a doc who works with you.
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I'm eager to hear what the cardiologist has to say on Wednesday.
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I'm eager to hear what the cardiologist has to say on Wednesday.
me too :-*
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The cardiologist says my coughing is related to dialysis and fluid overload lately. I must be losing weight and not known it until fluid overload landed on me. He says the aortic stenosis related to the heart valve is not any worse than it was a year or so ago. Just keep keeping on and see him as needed. He will order and echocardiogram for next year. He says dialysis will make the aortic stenosis worse with time as calcium lands in there. One day they will have to go in and fix it, but not now. He was not worried.
On another note he did tell me my nephrologist has left Kaiser. Kaiser has done nothing to give me a new nephrologist. For someone on dialysis for sixteen years they seem to not care for giving me appointments. I had to call nephrology and get my own damn appointment today. They did not even inform me my old nephrologist left.
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Helllo kitkatz,
I do hope you can consult with your new nephrologist soon and I am glad
that the echocardiogram turned out with a manageable explanation.
The question is now: why are you losing weight? Are you on a slimming diet
or is there another explanation for your sudden weight-loss to be found?
Best wishes from Kristina. :grouphug;
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The cardiologist says my coughing is related to dialysis and fluid overload lately. I must be losing weight and not known it until fluid overload landed on me. He says the aortic stenosis related to the heart valve is not any worse than it was a year or so ago. Just keep keeping on and see him as needed. He will order and echocardiogram for next year. He says dialysis will make the aortic stenosis worse with time as calcium lands in there. One day they will have to go in and fix it, but not now. He was not worried.
On another note he did tell me my nephrologist has left Kaiser. Kaiser has done nothing to give me a new nephrologist. For someone on dialysis for sixteen years they seem to not care for giving me appointments. I had to call nephrology and get my own damn appointment today. They did not even inform me my old nephrologist left.
You can probably expect to have an echocardiogram every year from now on to monitor your heart. Hope your symptoms improve soon with fluid removal. Can't believe you weren't informed about your nephrologist! WTH?!! It's things like that that anger AND scare me! Geez, we really do have to stay up on everything ourselves. I've had my share...from being incorrectly told that I needed surgery when come to find out, it was another patient who happened to have the same name as me who was actually the one who needed surgery. Glad I had them "triple check" their records! Another time, several months had passed by before someone realized that no one had called me about some suspicious lab results and to be retested. Thank goodness it wasn't cancer. Anyway, I know medical offices are overwhelmed but that is no excuse for them to not assign staff to notify patients when their doctor has left, no matter how busy they may be....as if the patients themselves don't already have enough to deal with! I wonder how long they would have let you gone without an appointment before realizing they had not set you up with a new nephrologist. Well, you're right...just gotta keep on keeping on and seems you are very good at that. Next time you go in, give ''em "a look". >:(
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The cardiologist says my coughing is related to dialysis and fluid overload lately. I must be losing weight and not known it until fluid overload landed on me. He says the aortic stenosis related to the heart valve is not any worse than it was a year or so ago. Just keep keeping on and see him as needed. He will order and echocardiogram for next year. He says dialysis will make the aortic stenosis worse with time as calcium lands in there. One day they will have to go in and fix it, but not now. He was not worried.
On another note he did tell me my nephrologist has left Kaiser. Kaiser has done nothing to give me a new nephrologist. For someone on dialysis for sixteen years they seem to not care for giving me appointments. I had to call nephrology and get my own damn appointment today. They did not even inform me my old nephrologist left.
Is there no neph in your clinic who checks you once a month? I thought that was required? Are you still doing nocturnal?
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There is a neph at dialysis clinic and yes, I am still on nocturnal. The neph and I at dialysis are having a great time with blood pressure meds. My body does not like anything. So we try all sorts of stuff.
I am down from 98 kilos to 90.4 as of last night. That puts me around 200 pounds. I have not weighed that little in twenty years. I saw the Kaiser neph. SHe recommends trying for transplant again. Sigh. We shall see what happens this time. I supposed to hear from transplant coordinators sometime soon.
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:grouphug;
What a story! I can't believe they didn't tell you your neph had left and didn't set you up with a new one!!!!! :banghead;
Are you trying to lose weight? That is alot of weight loss if you aren't trying! But at least you know why you were fluid overloaded!
I'm pulling for you.
Aleta
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That is positive that they want you to try for a transplant. I'm praying for that.
:thumbup;
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Several years ago was heartbreak city for transplant when they said no unless you get serious back surgery for a mass I have always had and has not done anything for years but sit where it is. She said she would look into my files. I wished her luck. She said yes you have a large medical file. No kidding. She seemed pretty postive about it. We shall see. I am going to be proactive and see my dentist and get clearance already in hand.
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Hello kitkatz,
I wish you good luck and send you all my best wishes,
Kristina. :grouphug;
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Best of luck kk! You are an inspiration to all of us. You are so strong to have been through so much yet still keep pushing forward. Sending positive thoughts to the transplant team you are working with and you! :thumbup;
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Good luck with getting listed for a transplant! That sounds hopeful. Maybe that spreadsheet of yours and the writing helped to put some fight back into you. And of course, the Barry Manilow CD's probably act as positive affirmations. Here's to producing more endorphins! :beer1;
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Thoughts and prayers that you win the transplant lottery and have a long and happy life!