TRANSPLANT INSIGHTS

[sandyHD]

HI everyone!

I am contemplating on getting a transplant.

Please tell me if it's far better to have a transplant than on HD. What I mean is, does it give you more freedom with life in general?

BEcause honestly, I am contented with having HD. it pretty much make me do whatever I want, except that I need to go the hospital 2x a week.

So please enlighten me as to life after transplant..

Are the risks really existent? I am totally scared of infections and dying instantly.

[MooseMom]

There are risks inherent in any treatment of CKD.  With HD, you run the risks of problems with your access, bloodborne infections and also the cumulative damage that HD does to your cardiovascular system.  There is a reason why transplantation is the preferred treatment.  A donor kidney is going to act more like your native kidneys than a machine ever will.

The issue isn't just one of freedom, rather, it is one of better health.  I'm sorry, but I just can't see anyone being healthy on 2x weekly dialysis.  Do you have regular tests to examine your cardiac health?  How about your bone mineralization...is that holding steady with such infrequent dialysis?

[sandyHD]

Nice points laid out.

I have to admit, I am aware of the long-term damage being on HD results. My doctors constantly encourage me to get a transplant because I am still  young but I just don't think I have the adequate resources to go through it.

It's unfortunate I am not covered with insurance so if I do get a transplant, it has to be on charity, and God knows how much bureaucracy happens in state-sponsored charities.

I have friends who are on HD for over 6 years now, and though the cardiovascular complications are catching up, she seems to have a relatively fine life.

But what you pointed out really makes me think right now. I have never been told anything as  straighforward as you did. I really need to work out on how to get financing for a transplant. Here in the Philippines it takes about $50,000 for privately funded transplant.

Good luck to me!

[MooseMom]

Yes, good luck to you.   You deserve a chance at a more normal life, a life that is healthier.  I have no idea where you would start to find out how to finance a transplant in the Phillipines, but perhaps you could start by asking your doctor/nephrologist.  Is there a chance that you could find a living donor? 

[sandyHD]

Getting a donor is not really a problem with transplant, but more on the financial aspect.
There is a state-run charity that sponsors transplant but it's like finding a needle in a haystack and the fact that I am single and only parents or husbands are allowed to process the papers on my behalf. I certainly cannot count on my parents for paperworks.

But the real chunk of my reluctance really is my fear I might die instantly because of complications. I had an uncle who had kidney transplant and died after 10 months, I know another patient who died after 3 weeks. but doctors blame they became lax in they medication and precautions.

[Chris]

If your only going 2x a week, then your either doing well or not getting enough. Seems the norm is 3x a week of in center hemo.
 
As for transplant, it depends really when you do get a transplant. By that I mena ones health at the time. The healthier you are the better I would sa, but not always the case since we all react differently. I still prefer havng a transplant over dialysis even with the hiccups I have had with my health tho.
 
However if you are comfortable with one treatment, one thing to keep in mind is is there a need for a change, wll my job support me by letting me be off, family support, friend support, self support

[sandyHD]

I used to get 3 times a week for over a year but switched to 2x because of cost constraints, also my labs are more stable and on the better side.

Sad reality is, in the Philippines, 2x dialysis is the norm, not because we are way healthier but because of how much it costs.. in my center, weekly dialysis costs around $100 and that's expensive in our standards.

can you tell me, what's life like after having a transplant? how you live, what you eat.

[Chris]

Well between the bumps in the road with the transplant portion (CMV, Pneumonia, etc), I also have complications from diabetes to deal with which the transplant has helped with some and also made healing a problem with eye surgeries. So as much as I tried to finish college, health and eyesight have gotten in the way. I see more doctors specializing in different parts of the body for complications I have, so that takes a lot of my time going to and freom doctors. That said, it is better than dalysis. I have more energy and freedom to do things and can eat anything I want so far because I need to gain weight and maintain sodum level (I hate eating salty products though). I do like to eat chocolate which I could not do before, drink coffee to no end, and eat ice cream if I choose. The one thing I do miss due to knee issues is riding my bike. I started back up while I was on dialysis, but years post transplant I developed knee problems and osteoporosis.
 
 
I am open to most questions, so just ask especially if I missed something.

[natnnnat]

Hi SandyHD.  My husband has had a transplant for 21 years, but I believe this is unusually long.  His kidney is now 'on the way out', failing slowly.  There are others here who have had a couple of transplants. So one thought is that a transplant is a temporary fix which might last quite awhile or might not.  Gregory vastly prefers his transplant to dialysis, I believe he was very fatigued on dialysis, and mainly slept, while after his transplant he finished a degree and got a job.  If you are going well on dialysis however, you may not have issues with fatigue.  Gregory takes a handful of tablets morning and night, which are subsidized here in australia, that is we get them for a nominal price.  Some of them still stretch our budget however, for example Aranesp is pretty expensive.  He has had trouble with skin cancers, and with his lowered immune system, he can have trouble with flus and chest infections.  Generally he is pretty robust, or was until he began having trouble with CMV (which came with his transplant but was dormant for a long time) and Pneumonia, last year.  He has issues with irritable bowel.  I feel I am rambling somewhat, so I'll leave it there.
As Chris said, post with more questions.


Modified to add:  I should correct that, he has had a transplant for 20 years, this is his 21st year. 

[sandyHD]

Hi Natnnat!

That's the upside in being a citizen in first world countries.

I have this thought that in third world countries like mine, the health system and the environment in general is not conducive for middle-class transplant patients.

I reckon first world patients have more than adequate support from the government and medical technology is state of the art, compared to what we have here.

But still thank you for sharing! I am more and more considering getting a transplant, the sooner the better.

I really just need to iron out so many things though.

I am fine with HD, but everyone else think I should get a transplant.

[Chris]

Only you and you alone can decide if a transplant is right. Do not let anyone else pressure you into something that you  do not feel right about.
 
 

[okarol]

I think it's good to hear from people who have experience.
Some people are doing fine on dialysis with no complications, so why rock the boat?
Others choose a transplant, and it can go great or there may be other issues.
Good luck with whatever you decide.