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Stage 4 kidney disease
brodex posted:
I am a 54 year old woman with kiney disease from a unknown origin. My GFR is currently 24. I have extreme anxiety about my future. I am hoping that a family member is a match and I could get a kidney without ever having dyalisis. I would like to hear other stories regarding transplants and how they are doing and what is recovery time actually is. I am healthy in all other ways (except for bad knees) and would just like some input. Also any symptoms when you GFR is in the low 20's. I am fairly tired and itch a lot. (I do not smoke or have diabetes)
john-skpt responded:
I had a combined kidney pancreas transplant in 2000, and things are generally doing well. It is not perfect, the required drugs can have some significant side effects, but I wouldn't be here today without the transplant.

My recovery time was probably rather longer than average, but my surgery was more intense and took longer, than a kidney alone. I was hospitalized for about 10 days and needed to take it easy for a couple of weeks at home. Most kidney transplant patients get out of the hospital in4 or 5 days, though every case is slightly different.

Symptoms vary for each individual: some experience only fatigue, some experience generalized itching, mental confusion, loss of appetite or nausea. It's different for every one.
mrscora01 responded:
I got my kidney from my cousin in 2002. She gave me a kidney on her birthday. Isn't that amazing? I hope someone is able to come through for you.

As for how the transplant goes, every person is different. I had a pretty rough time compared to most, but by the 3 week mark post surgery I was feeling better than I had on dialysis. You do get used to the drugs although sometimes there are side effects that you just have to get used to. All in all it was a great experience and I am grateful to my cousin all the time.

If you have any questions, feel free to ask. Don't forget that there is also an organ transplant exchange and you may find additional info there.

An_206632 replied to mrscora01's response:
amazing story! you are so lucky to have such wonderful cousin!
brodex replied to mrscora01's response:
Can anyone tell me how they felt prior to the transplant? Did anyone go straight to transplant without dialysis?
john-skpt replied to brodex's response:
I felt like hell, though I had continued to work. But I was sleeping a lot more and was always fatigued.Appetite had fallen off significantly.

Everyone is different.

I waited on the cadaver donor list for a long time, as most people do. Often candidates with a living donor can skip dialysis, and very rarely cadaver recipients get donors unexpectedly soon, if something in the donor tissue type happens to be a spectacularly good match for a recipient.

I opted to start dialysis somewhat early because my docs thought it a better choice than letting the body continue to degenerate on a gamble that a rapid donor match might crop up. It was a conservative choice, and it meant that I was on machines for a while, but in the long run it was a better one.
An_206633 responded:
I know the anxiey you are going through I am 52 and I am in in stage 4 my gfr is 22 I have no insurance and I lie awake at nite wondering what my future holds..are you in dialysis yet?
brodex replied to An_206633's response:
I am not yet in dialysis. My doctor says that I will be referred to the transplant team at 20, and probably looking at dialysis at a GFR of 15, if I have no family matches. I'm so sorry for your situation with insurance. It is one thing you should not have to worry about. I know that I am really tired and sometimes wonder if I would rather get it all over with. But, I guess there are no guarantees even if there is a good transplant. Do you know how your costs will be covered?
john-skpt replied to brodex's response:
There is a special subchapter of Medicare that can cover dialysis and some transplant costs. It does not matter if you are under 65, but once your doctors certify that you qualify as ESRD, usually creatinine clearance of 15, 20 if diabetic, you can get this assistance.

You need to find out about this and get the paperwork set up if you can, because it takes a while to get it started once you meet the criteria.
086nora replied to john-skpt's response:
hi i have 33 percent kidney function at the moment .
i am always tired need about 13/14 hours sleep am getting so frustrated because always tired
am losing a lot of weight as always feeling sick or get sick cant eat because of this .always skin iches drives me nuts how do u cope with all this.
feel so alone because am the only one in family that has it so cant compare stories with anyone to see how they cope with this

every time go back to doctors they say im getting worse but cant do anything until im about 15 /20 percent.
john-skpt replied to 086nora's response:
The general docs should at least refer you to a nephrologist. And there are dietary modifications that--with a doctor's supervision--might slightly help some of your symptoms.

How are hemoglobin and hematocrit doing? This might be part of the fatigue. It's treatable but most insurance will not cover the drugs until your condition worsens. It's possible, but the drugs can be ultra-expensive.
brodex replied to john-skpt's response:
I personally am hanging in there with a creatinine in the mid 20's. My main problem is fatigue. My H&H aren't that bad though. But...more blood work in Sept. Always an anxious time. But there are times that I think if I knew I had a match, I would like to get it over with. The fatigue can be really overwhelming. I try to go on bike rides and I end up sweating, heart pounding and dizzy. It used to be so easy. It sucks pretty much.
ljsupport replied to brodex's response:
I undestand what all of you are going through. I have PKD(poly cycstic kidney disease. My GFR was steady in the 30's and is now at 20. My neph says that I need to start asking my friends and family to see if they want to be a donor. My dr. wants me to have a kidney transplant instead of dialysis. I am so uncertain about my future and how do you go about asking for a kideny. My husband said he would and so will my brother, they might not be the right matches. I feel tired all the time and I have a three year old son. I am scared....I try to remain positive but it is so hard.
99tr20 replied to An_206633's response:
you should have started on medicare the day they told you that you were bound for dialysis. i did.
99tr20 responded:
just joined this community a few moments ago.i have noticed its been 7months since you posted this.that is a very short time when you are fighting for kidney fuction.i do hope you are doing ok. i have been in the same boat you are in(without a paddle) the itching as you probably know by now is from your eating habits.too much phosforous will make you itch also has everything to do with your bone health.they should have given you a list of thing not to eat. if they have not,ask for it. the closer you follow this diet,(and believe me when i tell you it is hard) the better you will feel as far as the itching is concerned. being tired all the time...dont think there is anything you can do about that, its just part of the game.that was one of the worse things to me. i use to go hunting and bass fishing with my husband all the time. when you saw 1, you saw the other, for many yrs.then it got to where i just could not keep up and i refused to hold him back.i went on home dyalisis(peritoneal) in 2005 and got some of my mojo back. to me it was MUCH better than going to a clinic 3 times a wk. it is very simple, and they train you well before you have to take care of yourself. it was crazy scary at first, but it wasnt long and i could have set that machine up with my eyes closed. you dont deal with your blood,they insert a tube in your lower belly area for you to put fluid in. the fluid sets awhile in your peritoneal cavity and cleans your blood. you drain it out and put more in. it depends on your prescription as to how much fluid,how long it sets,and how many times a day you have to do it. i myself did it at night when i slept. that worked until i had to have both kidneys removed. then i had to go to the clinic.just before i thought i would die from depression i was able to go back to my home treatments. then right after that i was blessed with a transplant. its only been3 months for me so,cant tell you much there:)it has been going well so far.the surgery was hard to get over then the meds were even worst to get use to. i wondered a time or 2 if it was worth it all. in the long run, i think it will be... keep in touch. i would like to hear from you how you are doing.hope i did not bore you too much with my semi-life history

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