Dialysis or transplant ?

[kristina]

Hello,
This is a question, but in a way it is more a point of discussion...
It is about dialysis versus transplant. On the dialysis-side I have been told by a nurse at my dialysis-centre that to their knowledge
no one has died directly from dialysis and I was also told that they know someone who has been dialysing for forty years...
... Obviously dialysis has its draw-backs e.g. the routine of regular dialysing and the subsequent dialysis-hangover (tiredness or a washed-out-feeling etc.).
So, dialysis keeps the dialyser alive, but one is tied to the regularity of dialysis...
With transplant, assuming the match to be ok, one has to deal with the (regular) immunosuppressants i.e. the side-effects
and the possibility of contracting some form of virus, disease, or the like. 
The benefit of a transplant is of course the freedom from dialysing and the freedom to eat and drink what one "normally" likes,
given the fact that one has to be very responsible as regards the transplanted kidney...
... So, the question or discussion revolves around what is better, dialysis or transplant?
Your thoughts on this would be very much appreciated.
Many thanks from Kristina.   

[Simon Dog]

Some of the risks of dialysis:

- Cardiac problems. particularly left ventricular hytrophy
- Amyloidosis
- Fistula problems (hemo); peritonitis (pd)
- Parathryoid and bone problems (renal osteodystrophy)

And of transplants:

- Skin cancer (high)
- Lymphoma (about 10%)
- Cancers you would get without a xplant can be more aggressive with immunosuppresents

Short form:

- No free lunch
- Prevailing thought is xplant increases life expectancy, with the only "overlap" being nocturnal giving about the same lifespan as a cadaver xplant.

[cattlekid]

Don't forget the risk of other issues related to immunosuppression:

Steroid-induced diabetes
Eye issues (glaucoma, cataracts)
Osteoporosis

[MooseMom]

Any treatment for any chronic disease will have its drawbacks and its side effects.  The $40,000 question is which side effects will affect you, and are those side effects treatable?

As you know, Kristina, I cannot speak to travails of dialysis, but my mother was on D for 5 years; she never had anything approaching a "normal" life, but then again, she was in her late 70s upon inititation.

Post transplant, I have labs done every month that checks my glucose level, among other things.  Steroid induced diabetes is a risk for SOME patients, but my blood sugars have been perfect (except for the one time when I couldn't keep any food down for 3 days yet still took my meds.  My blood sugar rose, showing me that prednisone really DOES need to be taken with food).

Osteoporosis is a risk, just like cattlekid pointed out, but I have a bone scan every year, I take calcium supplements, take weight bearing exercise and eat a high calcium diet.

There are risks, but we know what those risks are, and we know we can take steps to mitigate them.

I have not had any kind of infection since I've been on immunosuppressants.  I've not even had a cold.  I DID have a stomach bug once, but I think that was because I ate a lot of homemade salsa (though not from MY home) one time that might have been suspect.

Which is better?  For me, it was tx by far.  Dialysis primally frightened me.  Transplant did not.  I can't explain why I felt that way.  I am extremely happy with my treatment.  You know first hand what it has enabled me to do.  It was extremely important to me to have the freedom to get on a plane to London.  I did not care about the risks.  I knew they were real, but having my freedom was paramount.

[kristina]

Many thanks for your kind replies Simon, cattlekid and MooseMom, it is very much appreciated.
The reason for my questioning is because I have realized that I don't have as many problems on dialysis as I expected there would be
and they are manageable with the help of the renal unit... and, apart from the inconvenience of my regular thrice weekly dialysis-treatments,
I am very grateful for it and I am managing not too bad, although there are ups and downs...
This came as a complete surprise, because I expected the worst before even starting with dialysis
and especially because of my medical history I felt particularly vulnerable and dreaded the start of my dialysis-treatments ...
... mind you, I don't know what the future holds for me on dialysis ... (touch wood !)
Because things are not going too bad at the moment, it makes me question whether I would be better off - or not - having a transplant,
considering my drug-intolerance, allergies to so many different medications etc.?
Many thanks again from Kristina.

[Simon Dog]

I forgot to mention prednisone induced avascular necrosis.

[coravh]

It's a very personal thing. Some folks (like me) don't do well on dialysis. I really was dieing on dialysis. And some folks live quite well for 40 years. There is an ever growing club called the quarter century club - made up of people who have had their transplants for 25 years or more. I don't know what the stats are now, but when I was looking into things before dialysis/transplant about 15 years ago, the numbers were pretty clear. Average longevity was much better for transplant patients than for dialysis patients. The bottom line is that "averages" don't apply to any one single person. I enjoyed the freedom of not having the part time job of dialysis (in center hemo took 15 hours a week plus travel time).

[cassandra]

Hi Kristina I've enjoyed my dad's kidney for 12 years and have been living now for 19 yrs on D. Although PD was pretty okay so I could still work, and feel less of a 'patient', I'm still leaning (most days) towards saying "yes please" to a cadaver kidney transplant. I understand your fears for the meds and stuff, although some allergies are actually suppressed by those immuno suppressants, of course depending on what kind of allergies.
Living on home hemo is in a completely different league from in-center HD though.
It's difficult though, neither is easy. I think both have negatives and I haven't found the positives of D yet, bar staying alive of course.

In short, I don't know, I've decided I don't want to think about it anymore   

[Michael Murphy]

The most compelling reason I know of that factors in this decision is the Emory University app that predicts mortality for dialysis and transplant patients. It asks a series of questions about age, sex, and health.  For me the results are stark, I have a  14% chance of deign dead on dialysis, with a transplant my odds change to 2% chance of death.  I am not on the transplant list because every other year I have a cancerous mole removed.  So the transplant is not open to me.  However according to Emory the transplant solution gives better survival odds.

[kristina]

Many thanks for your comments Simon, coravh, cassandra and Michael,, it is very much appreciated.
Your replies are helping me to build on the pros and cons of dialysis and transplant.
I find it most interesting how very individual this matter is and on how different grounds decisions are based.
All the best wishes and thanks again from Kristina.

[SooMK]

Having had a pre-emptive transplant I don't have experience with dialysis myself but my mother was on dialysis the last 7 years of her life. Her decline and despair were heartbreaking. She had other health issues and enough stress in her life for ten people, none of which helped. So that was my view of dialysis. Even recognizing the drawbacks of transplant I know it was the best choice for me. I do not find it difficult to follow all the rules and take the meds and so on. Until an actual cure is found for CKD, each person has to decide what is best for themselves but there is a long waiting list for transplant for a reason.

[kristina]

Thank you for sharing your experiences SooMK.
I am very sorry what your mother went through. It must have been heartbreaking
and I can understand your decision and send you my kind regards and good luck
and thanks again from Kristina.

[Deanne]

I was fine and healthy for the brief time I was on dialysis (6 months). In many ways, I didn't see the point of fixing what wasn't broken by getting a transplant. It was the pros and cons of my future that led me into transplant. While I was doing great at the time, statistically, I would be be better off and healthier for a longer period of time with a transplant. In the end, the first 18 months of my post-transplant life were rough and many, many times I regretted my decision to accept it. I even talked to my neph once about letting it go (stopping anti-rejection meds) and returning to dialysis. The transplant itself was working great. No rejection episodes. Creatinine of 0.8 - 0.9. There were just so many other issues that cropped up from it that I was constantly battling something and barely able to function. I think things have finally calmed down now over the last couple of months. I'm starting to feel like a healthy person again and am looking forward to doing things I would have struggled with on dialysis. If life continues relatively smoothly going forward, it'll have been worth it.

I don't think there are any right or wrong answers. Either way, life is a gamble. It's a gamble to stay healthy for a long time on dialysis. It's a gamble to accept a transplant not knowing how your body will react to it. All you can do is look at the life you want to have and consider which is more likely to provide it to you.

[MooseMom]

Kristina, by what I understand, you will be spending a couple of years on the wait list, so you have time to make this decision.  I am very glad that D is going well for you right now, and hopefully in two years' time, you  will still feel the same way.  But if you do not, you will hopefully still have the option of transplant.  Your medical team seems to think that tx could be a good treatment option for you, but it is true that they do not have a crystal ball; none of us do!

[kristina]

Many thanks for your kind replies Deanne and MooseMom.
Although there is no definitive answer to this problem, it has allowed me to compile a list of questions to discuss with my transplant-team
and it has also brought me into a more balanced frame of mind such that I can look at both options in more realistic way
and this I appreciate very much.
Many thanks again from Kristina.

[DialysisGoneFOREVER]

WHY on earth would ANYONE choose to be on a machine than live a NORMAL life?? I choose transplant 100/100 times! 

[Michael Murphy]

Some of us have no choice we are precluded by a medical reason so we are not canadates for transplants, you are 7 times more likely to die on dialysis then after a transplant.

[MooseMom]

Some of us have no choice we are precluded by a medical reason so we are not canadates for transplants, you are 7 times more likely to die on dialysis then after a transplant.

And this is exactly why we must continue to find better and more efficient ways to dialyze.  Dialysis is the only RRT option for many, many people and thus cannot be thought of as merely a "bridge" to tx. 

[kristina]

Many thanks for your thoughts FailingTransplant, Michael Murphy and MooseMom
and thank you Michael for answering FailingTransplant’s question about why anyone would choose a machine instead of transplant...
... Sometimes things do not work out as hoped for and sometimes there is no choice ...
... and I have read that sometimes the necessary transplant-medication can be very trying for a long time  ... 
And thank you MooseMom for mentioning, how important it is to find better ways to dialyze,
so that dialysis seizes to function as a “bridge” to transplant.
... Please, MooseMom, what does "RRT" stand for?
Many thanks again from Kristina.

[Jean]

Dear Kristina,

During your time at IHD, and mine too, we have learned a lot from others. In your case, keep in mind the medical allergies you have. They are so bad I flinched when I read you might think of a transplant. I am not trying to influence your choice, sine I am not on D yet and dont know much of anything, just trying to relate to you and the things that could go wrong. On the other hand, you are so good at diet, taking your pills and doing what you need to do, that it may not be problem for you. Whatever you decide, I know it will be the right thing for you and you will be successful.

[kristina]

Thank you Jean for your kind thoughts and concern, that with all these drug-intolerances and allergies
my approach to be listed on the transplant-waiting-list appears like a challenge ...
... but the fact that my body tolerates dialysis reasonably well creates a feeling of hope ...
Good luck wishes and many thanks again from Kristina.

[kickingandscreaming]

Does anyone on this forum have experience with the transplants from old kidneys?  I am a pretty young 74.  I certainly don't think I should monopolize a donor kidney that could help a young person with much more life in them than I have.  My neph has mentioned, several times, that there is a secondary market in kidneys from older people that may not be tip top, but are good enough for another old person.  Given that my quality of life was quite good when I had 15% and up of kidney function (actually even until it hit 6%), I would think an old person's 30-50% kidney would be quite adequate. 

Anyone with experience in this?

As for me, I'm on in-center hemo awaiting getting my PD cath fixed.  I have avoided thinking about a transplant because I have a primal resistance to taking immuno-suppressive drugs for life.  And it also sounds like going the transplant route thrusts you even more into the medical-industrial complex than even D does.

[Michael Murphy]

One of my fellow patients who was reluctant to get on the list just had a double kidney pancreas transplant. He stopped back to visit the center and was bouncing with joy.  It was nice to see some one graduate from dialysis.

[SooMK]

I don't know if this would be considered the same thing but my wonderful live donor and I were both 65 at the time of my transplant. I am sure that some of the kidneys that become of available from older people are still in good shape with many years left on them. I understand your concern about lifelong pharmaceutical dependence but you have lots of company in that department. Best of luck.

[MooseMom]

Does anyone on this forum have experience with the transplants from old kidneys?  I am a pretty young 74.  I certainly don't think I should monopolize a donor kidney that could help a young person with much more life in them than I have.  My neph has mentioned, several times, that there is a secondary market in kidneys from older people that may not be tip top, but are good enough for another old person.  Given that my quality of life was quite good when I had 15% and up of kidney function (actually even until it hit 6%), I would think an old person's 30-50% kidney would be quite adequate. 

Anyone with experience in this?

As for me, I'm on in-center hemo awaiting getting my PD cath fixed.  I have avoided thinking about a transplant because I have a primal resistance to taking immuno-suppressive drugs for life.  And it also sounds like going the transplant route thrusts you even more into the medical-industrial complex than even D does.

I was on the "extended criteria" list but ended up getting a tx from a younger person.  The secondary market you refer to is the extended criteria list.  Also, new protocols from OPTN will help to ensure that donor organs and recipients are better matched in order to get maximum life from the organs.

As for being on immunosuppressants for the rest of your life, I can't imagine being more dependent upon the medical industrial complex than being a dialysis patient.  I take a handful of pills each day, I go for labs once a month, and I see my tx neph once a year.  That's pretty much it.  I suppose everyone with a chronic condition is on some medication forever, particularly once you hit 50.