Should I get a Transplant

[wcmjt]

I am a 73 year old male with Polycystic Kidney Disease (I have known I have PKD since my 30's).  My GFR has gone down over the years and right now and for the last 1 1/2 years has been hovering between 15 and 16.  I also have Dilated Cardiomyopathy, Left Bundle Branch Block and moderate Mitral Valve Prolapse.  I am NOT on dialysis and feel pretty decent over all.
I am on a Transplant list but since I am not on dialysis, I have chosen to be on the Inactive list (meaning I am collecting time on the list but if a kidney became available I would not be called).
Here is my question I would like to hear opinions on: Should I go active on the list?
I have been told by the Transplant Center I would probably be a person that would have some bumps in the road for a while after transplant due to my present health.  Obviously I know there are risks involved in getting a transplant at my age and with my health situation, but on the other hand, the longer I wait probably the risks get more.  On the other hand I am not on dialysis now and I think I have a ways to go before I have to go on dialysis.
Any suggestions or comments would be appreciated.
Thanks
UPDATE
Well here is an update.  I went for an annual visit to the Transplant Center (a well known excellent facility) and talked to the head surgeon who has been there for 42 yrs.  He said since I am not on Dialysis and am feeling well a Transplant would not match the way I feel now.  He also said I would undoubtedly be one of the 50% of folks who would end up back in the hospital multiple times due to complications.  I asked why he thought that and he said because of my age, heart disease, enlarged prostate causing some urine retention and because I have had a heart attack!!!!  I was floored and asked why he thought I had had a heart attack and he showed me my last results of a Nuclear Stress Test that showed a small area in the lower left section of my heart that no longer showed blood flow.  No one told me that before.  He said if I was his father (after some prodding), he would recommend I try dialysis (he recommended Peritoneal) and see how it goes.  If I absolutely could not stand it and was willing to take the risk I could go active on the list.
In the mean time I have called to get a copy of my last two Nuclear Stress Tests (one just recently and one in 2018) and made an appointment with my Cardiologist to see what he says about this 'Silent Heart Attack".  Upset and don't know what to think.

[MooseMom]

I would like to know more about which specific "bumps in the road" are anticipated.  Would those bumps be too difficult to manage successfully?

It seems to me that if said bumps were deemed too significant, you would not be on the transplant list in the first place.

Being active on the list does not ensure quicker transplantation; a lot depends upon where you are.  You might find yourself on dialysis before you get a single call.  It's hard to say.

This is a deeply personal question you've posed because the answer lies in how risk averse you are.  My mother and my aunt and my cousin all spent time on dialysis (their kidneys failed for different reasons), so I've seen dialysis as up close and personal as possible without ever having actually had to go on it.  For myself, the thought of dialysis was the stuff of nightmares.  Saying that, though, I do not have the underlying health concerns that you do.

There is no right or wrong answer unless you can see the future.  My crystal ball has a major crack in it, so I don't know what your personal "right answer" might be.

I'd like to hear more from other members and also more from you, wcmjt, as you work toward an answer.

[Simon Dog]

Acceptance/rejection of an offer is a continuum.   You need to learn about KDPI quality and other quality rating factors.   A middle ground would be to accept a reasonably high quality kidney if offered, but pass on those with a high KDPI number.

[Cupcake]

Is there any chance your cardiomyopathy is from CRF? I had congestive heart failure before the renal docs thought I needed dialysis; finally the cardiologist said that the only thing to help my heart was dialysis; it did the trick and I felt so much better. But--getting a transplant before you ever go on dialysis is the thing to do. You say you are otherwise feeling good, so I would vote to seriously consider transplant. I feel great 2 years out, my GFR is right at 60, no more heart failure.  Best of luck to you!

[iolaire]

Sorry you are listed already so the following is not relevant...  I'm pro transplant, especially if you are feeling your best right now, odds are with time it you will feel worse.
--
The transplant process in the US has wait time for kidneys.  Your wait time is based on when you are accepted to be listed by the the transplant team.  Its advantageous to list prior to your dialysis start as your listing date is the earliest of the date you were accepted or the dialysis start date.  You can be listed pre dialysis based on your kidney function.

Therefore I recommend starting the listing process and decided later if you want to accept a kidney.  If you start the process to get listed you will get a great health checkup at no charge to you - until you are transplanted.

[Michael Murphy]

While I am not transplant eligible I have a app from Emory University that has you enter age, race, cardiac condition and diabetic ststus then calculates your yearly survival chances on dialysis and after transplant.  Odds on dialysis is 1 in seven I’ll die any given year, after transplant it’s  2 in a hundred. 

[kristina]

I am a 73 year old male with Polycystic Kidney Disease (I have known I have PKD since my 30's).  My GFR has gone down over the years and right now and for the last 1 1/2 years has been hovering between 15 and 16.  I also have Dilated Cardiomyopathy, Left Bundle Branch Block and moderate Mitral Valve Prolapse.  I am NOT on dialysis and feel pretty decent over all.
I am on a Transplant list but since I am not on dialysis, I have chosen to be on the Inactive list (meaning I am collecting time on the list but if a kidney became available I would not be called).
Here is my question I would like to hear opinions on: Should I go active on the list?
I have been told by the Transplant Center I would probably be a person that would have some bumps in the road for a while after transplant due to my present health.  Obviously I know there are risks involved in getting a transplant at my age and with my health situation, but on the other hand, the longer I wait probably the risks get more.  On the other hand I am not on dialysis now and I think I have a ways to go before I have to go on dialysis.
Any suggestions or comments would be appreciated.
Thanks

Hello and this is a most interesting question, especially since a transplant should give a chance to live longer and, if there is a bit of good luck involved, it could even create a better quality of living. But unfortunately there can be (and often are) complications involved and this could eventually create an unfortunate different thought-process.

Take my case for example: I survived quite well (as well as can be) on dialysis-treatments and was looking forward to a transplant-operation. My great hope was that after so many years of being unwell, I could have a chance to continue with my career etc. and I was really looking forward to the transplant.
 
But unfortunately, when it finally was my term, the most experienced and best surgeon became too exhausted to carry on operating on that particular day and so I only had “the second choice” of surgery and after my transplant-operation I noticed straight away, that “things” had not gone as I had hoped.

Furthermore I had also the very bad luck of receiving a transplant that would not even have been considered as a real option due to the usual donor-age-restrictions etc.  and of course, I only started to become interested in all that, when I noticed, that “things” did not go “according to plan” with my transplant ... and unfortunately ... I have had problems with “my” transplant ever since, not only straight after the transplant-operation but unfortunately ever since.

Would I go for a transplant again? I honestly don’t know and that is the truth. I also feel sad that luck was unfortunately not on my side when I received the transplant.
Mind you, it just could be that I was the unfortunate unlucky one and everyone else is happy and lucky with their transplant ?

Good luck and best wishes from Kristina.

[enginist]

Your experience, Kristina, is one of the reasons I'm not considering a transplant or dialysis.  Both of them have a risk of complications.  Seems like a lot to go through for what could be a lower quality of life.  Quality over quantity is specified in my paperwork.  When it's my time, they can float me out on a fluffy cloud of morphine. 

[Simon Dog]

I did D for 6 years 3 months and 5 days and have a very good quality of life during that time; even better post transplant.

One advantage of hemo D is that you can ride out until all your residual renal vanishes.   Then, if you discontinue, you get a quick kill rather than lingering for weeks as you slowly get sicker.

You also get to evaluate if death really is better than dialysis.   In many cases, the answer is "no".  Of course that can vary depending on your tolerance to the procedure; comorbidities; etc.

It would be a shame to throw in the towel without at least giving D a test drive of a few months.

[enginist]

The diet would be worse on D, and the renal diet is bad enough.  I like to run, and I probably couldn't run on D, which would be one less reason for living.  The virus is a factor too.  My health could fail at any time.  When it does, I don't want to stick around to see how bad it gets.   

[Simon Dog]

The diet would be worse on D, and the renal diet is bad enough.  I like to run, and I probably couldn't run on D, which would be one less reason for living.  The virus is a factor too.  My health could fail at any time.  When it does, I don't want to stick around to see how bad it gets.   

Yeah but why checkout now?   There was an article when I just started D about a guy who ran marathons on D.

If your health fails you can always check out. 

Would you shoot someone who might try to kill you in the future, or wait until he tried?

[enginist]

Good question, good arguments.  I don't want to check out now, but I don't want to live forever.  There's several books and movies about precognition and the question of whether it's morally wrong to imprison a future criminal. 

[Michael Murphy]

I have been 8 years on dialysis,  while I would not recommend the lifestyle for those without ESRD, with ESRD  the dialysis experience while not enjoyable is at least better than dead.  I spend about 20 hours a week at or on dialysis, that leaves me 148 hours a week to have a life.  The one single advantage of dialysis is the fact we go voluntary, if live becomes in bearable we can just stop dialysis.  I had a friend 20 years older than me have one of her doctors stop by at the dialysis clinic and tell her she had a very nasty cancer and had at most 3 more very painful months to live.  She stopped dialysis then and there and pasted painlessly a week latter.  While I love this site it’s name makes it seem to people that dialysis is a complete horror story.  It is a commitment to a rigorous life style with monk like diet and a limited life.  While I have had 2 heart attacks, the first 5 years prior to dialysis dialysis has allowed me 8 more years of life with my wife of 28 years.  8 years of retirement, many books, computer games, and just plain fun I would have missed out on.  My advice is don’t prejudge whether dialysis is for you but give it 6 months ( the first 6 months are the worst) if you try it and can’t live with it you don’t have to, you can quit any time.

[enginist]

Six years, eight years, and some on here with an even longer history of D .  You're all tougher than me.  You should be congratulated for your strength and determination. 

[Simon Dog]

Depending on your personality home dialysis can either make things much worse or much better - but be sure to get enough information to make a fully informed decision.

[kristina]

Your experience, Kristina, is one of the reasons I'm not considering a transplant or dialysis.  Both of them have a risk of complications.  Seems like a lot to go through for what could be a lower quality of life.  Quality over quantity is specified in my paperwork.  When it's my time, they can float me out on a fluffy cloud of morphine.

Hello enginist and I do apologise, that it is only now that I have come across and read your recent thoughts and please don't take my own thoughts & experiences as an example to follow, because it would not be fair to yourself.

Both our health-histories etc. plus different approaches etc. to dialysis and kidney-transplants in different countries may differ etc.

I also feel I must point out, that my own dialysis-treatments were not going too bad. And just because I was not particularly lucky with my kidney-transplant ... well ...  that does not necessarily mean that my unfortunate experience might be the rule ?

Would it not be a good idea if you would phone some dialysis- and transplant-centres, explain your medical situation and ask them, if you could visit their centre for more information and perhaps have a face-to-face-talk with some of the patients ? Could it not help you to make a much more informed decision?

As I have mentioned before, unfortunately "things", especially after my kidney-transplant have not gone that well for me. But just because my transplant-experience has - so far - not gone as I had hoped, that still does not mean, that everyone else's experience might be the same or similar?

It is, of course, very unfortunate, that not that many IHD-lers come back here and communicate about their transplant-experiences. But if you would go and visit some centres, you might get a more informed idea?

I wish you good luck with everything and please think it over and I send you all my best wishes from Kristina.

[UkrainianTracksuit]

I held off commenting on this post because I am not in the age group mentioned. It is pretty universal though to say "no" to dialysis until you go it a try through.

I was in my 20s when my first choice was conservative care: the nice way of saying no dialysis or no transplant. Naturally, the team thought it was just rebellious and perhaps I just didn't understand that I would die. That was clear as a bell but I just didn't want to live a life how I imagined it would be. I'd been around (older) relatives on dialysis and I felt it just wasn't worth doing. I panicked at the thought of how one could even have a life, even though my close contacts continued to live "as usual."

At the same time, I said no to a transplant as well. I had heard the awful side effects of medications and others that had been through it (and waiting for a kidney again) warned it wouldn't be sunshine and roses. As well, I heard the odd tale or two about someone that their kidney only lasted for like 2 years and then back on dialysis. The old adage, "You trade one set of problems for another" in tx versus dialysis debate led me to think, gee, well, blast all of it and just don't do either.

Then, I ended up on dialysis, and I felt better. At first, it was for an AKI (still had CKD, but kidney needed that bit of help to recover) and then it was a long-term/life support arrangement. The transplant question that I had initially (and boldly!) shot down was brought up again and I thought, hey, why not, this isn't as bad as I thought, so let's see. A single organ became a double organ transplant. If you asked me 10 years ago if this was in my future I'd have told you "no way."

And I am not a tough person at all. It's just matter of letting go and staying open to whatever comes my way. What I personally thought in my head was my limit was smashed down. Keep in mind, this comes from a person that screams around the house when I encounter an earwig.

Anyway, the point of this nonsense is at least give things a try, or be prepared to give things a try. A lot of what we concoct in our heads does not match what we see when our boots are on the ground. In the case of tx, there is adequate pre-testing to determine whether one can physically handle the surgery and recovery, though we don't know exactly what the "bumps in the road" mentioned would be. Do they mean the physiotherapy/weakness aspect?

Obviously, this means sweet turd all to someone that has felt their life complete or whatnot, but the advice rests to at least give things a shot. Preemptive transplants (prior to needing dialysis) occur once below a specific eGFR so that is something to think about if you would like to go active. If you are in stable health now, it may be worth considering, rather than decline that can happen as ESRD progresses or on dialysis.

Like, I am a young(er) person and recovery from muscle wasting would have been less a job had I head my head on straight and went for a tx sooner.

Just some really useless two centers over here, I guess.

[enginist]

Murph, you were 61 when you started, Simon even younger.  Age makes a difference.  I'm almost 73, healthy but in a more vulnerable population.  I talked to a transplant physician about three years ago.  He said that patients in their early seventies do well, while those in their mid-seventies do not.  I suppose that the same metric can be applied to D, which means that I'm about to age out of the more resilient category.

Kristina, I mentioned you only because your experience has been similar to mine.  I had surgery about a year ago and there were complications, which I don't think are all that rare.  If I do opt for a transplant, I don't expect it to succeed or fail based on your results.

UT, I've had two AKIs in the last 13 months.  The first one sent my GFR from 31 to 14, but then it bounced back to 36.  The second one knocked it down from 36 to 16, and it bounced back to 28, where it is today.  I think that each AKI makes you more susceptible to another.  My luck has been, and continues to be, extraordinary, but I know that it won't last forever.   

I should also say that, on the whole, I have benefited greatly from the doctors, nurses, and PAs at Northwestern Memorial. 

[Hereware]

If the transplant is the only way to be better, why not. But what you are doing is good. Get as many opinions as you can to help you decide.