Wondering wether to carry on if not suitable for transplant.

[Mutley]

So I'm thinking and reading everything I can find on having vs. refusing dialysis. I suppose the main points to consider are what this treatment is actually doing for me. I am under the impression that dialysis is really a supportive / palliative measure for myself, as opposed to curative. The survival rates for someone like me (high blood pressure, diabetic, on Tacrolimus which is hard on kidneys) is about 10% of reaching 10 years.
My kidneys were fine until 2012 when I had an accident. I broke a leg (double comminuted fracture), which sent me to a rehab centre post operation to pin it and learn to walk on it as it was a very bad break. While there I contracted a streptococcal infection that spread to my brain. I had a craniotomy to remove an infected mass from the brain and continued to deteriorate after the operation. The infection spread to my liver and killed it off, meaning I needed a liver transplant. The leg was amputated below knee to get rid of the infection so I could have the liver TX. My kidneys had "shut down to protect themselves and not really fired back up properly" according to my doctors, so I had dialysis before the transplant and for 4 months after, when they got up to 25% functionality. I have had to go back on dialysis a couple of times when infections / c diff have struck, but got back to about 20% to not require it any more.
Now, the Tacrolimus (liver anti rejection medication) has finally driven my functionality down to 7% meaning it's going to be a permanent thing.
All I want to know from my nephrologist professor is wether or not I am a candidate for transplantation. If not, then what's the point? I'd rather go from toxicity by refusing dialysis that keep on with the endless travelling, waiting for transport, being chained to a bed and then a day recovering in between. It seems that death by kidney failure is a relatively pain free and peaceful way to go rather than suffering the tedium and effects of dialysing 3 times a week only to get caught by something painful like cancer, lung disease, heart attack etc.
Even if I were a candidate for transplantation, seeing as I'm on Tacrolimus, won't the new kidney just be hammered by the drug anyway (?), and transplants only give you one kidney so you start running anew at only 50% maximum.
The more I think about it, the more sensible decision seems to just give dialysis up and let my body naturally shut down. It could take 2 weeks, it could take up to 14 months. Who knows, as long as I prep everything before quitting dialysis, I can say my goodbyes to everyone and have a comfortable "time remaining". Of course the other thing that plays on my mind is the liver transplant. I feel as if I have a "duty of care" to keep going as long as possible because I've been given this amazing second chance and I would be selfish if I quit dialysis as it would be seen as a waste of a transplant. I have had an extra 3 years though which means it has definitely served a purpose. It sometimes feels like a burden though, with the responsibility to look after it (I don't drink / do drugs, but you know what I mean).

[Simon Dog]

The 50% maximum is not a problem - transplant patients (and donors) typically have creatinine in the normal range.

Tacro is nephrotoxic, however, you would be on it (or similar class drugs) after kidney transplant even if you didn't already have a replacement liver.  It's one of the big reasons transplanted kidneys have a finite shelf life, and often do not last the life of the transplantee.   Don't take it as a given that the liver xplant will increase your risk of kidney rejection.   You are in an interesting situation as the kidney transplant will not increase your risk of carcinomas as you are already on the anti-rejection protocol.

Dialysis is not terrible if you do it on your terms.    I'm leaving work in a bit, will have a quick dinner with the wife, then upstairs to the clinic for an evening of laptop work, phone calls to friends, and Netflix.    Some people spend as much couch potatoe time who don't do dialysis.   My clinic is a one bed unit located in my house  .  If I yell at the tech, my wife will come running wanting to know why I am talking to myself.

There are VERY easy ways to commit suicide painlessly, and those with fistulas and lines have one more than most people, plus there is the "legal way" of just stopping dialysis.   Knowing I don't have to put up with dialysis makes it a choice, and so far, I find choosing life very worthwhile.

And finally, renal transplants are much less risky than liver xplants.

[Hootie]

Cannot answer the question about your transplant situation and the drug impacts....But I can say what in home Hemo Dialysis on the NxStage system has mean to my wife and I. After our significant research on all the options for dialysis, we concluded that home was for us. Our nephrologist wanted us to do in center three days a week to start to get used to it. We started that and after 90 days we started training for in home. My wife knows the feeling that you mentioned about being washed out and recovering the next day from dialysis from in center. It was better than the Stage 5 pre dialysis feeling, but not good.

Once we got home, she is a different lady in a fantastic way. She has been a battling Type 1 since she was 13 and started dialysis at 60. We have been at for 6 months in home and would not do it any other way.

Everybody is different and the options are multiple....Think about those options rather than living with the in center wash out. You have dealt with a lot in your life and you deserve a better outcome. Work at the solution with others and there could be some sunshine for you ahead. We are all here to support you!

[kristina]

Hello Hootie,
You certainly went throught it in a big way and I feel very sorry about this.
... But I still could not give you any idea what to do or how you could go from here because that is your own decision ...
... I personally would be much too inquisitive about life and the future and what could be in store, to entertain the idea of stopping dialysis...
... But mind you, I have my sad moments as well about my dialysis-situation, my bad days and my dialysis-routine etc.
... but there again dialysis offers me a chance to continue my life nevertheless and I am grateful for it ...
... I am also grateful how much easier dialysis has become these days,
if one thinks about how people struggled on dialysis say 10 - 20 - 30 or 40 years ago...
... and dialysis-treatment as a whole has certainly become a little easier to take these days ...
... and through the Internet there are also many interesting offers in - for example - how to start and develop a new hobby etc.
For example, I have started to study how to read music and how to play the piano with the help of youtube,
by listening to pianists on the Internet and study how other pianists interpret certain piano-pieces etc.
and all that offers me a new way of learning etc. because dialysis and my health-situation are too unpredictable
to ask for the help of a piano teacher...
... These are my thoughts and I do hope you re-think your situation, because all in all, despite of what you have gone through,
you are still here and I am sure that with the help of your doctor there is a way forward for you ...
I send you my kind regards and all the best from Kristina.

[Sugarlump]

Transplants aren't a guarantee to a better life.
They don't always work, or work well ... and the side effects of the drugs you need to take are a big consideration.

Better to try for decent dialysis in the short term than focus on transplant as the end game.Find a way that you can manage and improves your quality of life.

As far as I am concerned 50% function would be just great as would 25%.
I have less than 5% these days...

[Athena]

Mutley, I am very sorry to hear of the pain and suffering you have endured after your accident and the ongoing anxieties this is causing you. Anyone in a situation of trying to make an end of life decision needs to be in a relatively sound frame of mind in order to be able to make that decision. No one can make that decision for you.

It does sound to me like you may be suffering unnecessarily from less than satisfactory in centre dialysis treatment. Many members here have found better dialysis options. Are you able to do the same? From what I gather home dialysis seems to be the most favoured option. Also, don't assume you may be rejected for a transplant either. From your post, you have not yet received an answer to this question so there is one more thing to potentially hope for.

Wishing you the best of luck in your ongoing medical treatment. Please continue to ask your Neph questions as demonstrating your commitment to improving your health always seems to receive a better response from doctors 

[Charlie B53]

What I say may seem harsh, but I won't pull any punches.  You are far tougher than you think yourself to have survived these tests so far.  Depression is expected as a result of these trials.  Do NOT be afraid of admitting that these are a major cause of your depression.  Learning to cope, and to find or re-find, the true meaning of life is essential to regaining that inner strength that it seems you are losing.

Many here have had there own experiences with similar depression, some did give up, but most have gotten past it and are managing. Some totally thrive on the adversity that they deal with daily.  Sharing your concerns here was a great first step, reaching out for the support of others.

We will ALWAYS be here, ready and willing to lend an ear, share experiences, and hopefully helpful advise you may use to lighten your spirit, gain the strength to make decisions that are right for you and yours.

You haven't stated your views on suicide.  I don't know if you have Religious beliefs, or if it really matters.  Giving up, quitting treatment could easily be considered a form as you would NOT be doing anything to help prolong your life.

I happen to believe in all things for a reason.  Even though I do not understand why, somewhere, somehow, there is reason and meaning, so I MUST continue on searching for knowledge and understanding.  Hopefully, one day I will learn the answers.

I hope that type of desire is found within you, because you seem very lost right now and are not sure which path is best.

Trust, and you will learn.  Seek and you will find.  It won't be easy.

Take Care,

Charlie B

[Michael Murphy]

Mutely what you have gone through would depress a saint.  The never ending roll of dialysis is depressing by itself.  My advice is take it a day at a time.  While you  have a sustainable quality of life go to one more dialysis,  make sure you do things you enjoy and live for the day.  Dialysis is only a treatment to let you live for a couple of days.  Take advantage of the extra time, visit love ones, go to the beach,  do the things you love.  If and when the quality of your life becomes unsustainable then start looking at your options.  I am not transplantable since every year I have melanomas removed,  however Dialysis takes me 18 hours a week, that leaves 150 hours to have a decent life. ESRD is a kick in the butt but it's  livable, is a transplant better than dialysis certainly is it a guarantee of a perfect life, no.  I know the mortality rate for dialysis,  but follow the restrictions, and you can increase your odds.  Personally I want to live long enough to see the new star war series.  Stupid goal but to each their own.  Good luck I hope every thing works out the way you want.

[Mutley]

Thanks everyone for all of your input, thoughts, comments & experiences. I got the news I'm a suitable candidate for tx so that's one positive. After the liver I suppose this will be a walk in the park as operations & stresses go!
Thanks again everyone. Interesting reading and much appreciated. I need to remind a couple of the male nurses that it is going to be on my terms as there is one who likes to feel he has a hold over you. Not taking that any more, so will remind him we have to work together. Take care all.

[Mutley]

Michael Murphy, that's how I've set my life out at the moment....will review when the Bond film has been released, then the Star Wars one and then if there's anything interesting in the news I want to see the resolution of (was that MH370 they found or is that my next review postponed?)!
Charlie, no I don't have particular religious beliefs....I just believe we are not the only life in the never ending universe. No specific thoughts on suicide either, except I would never involve someone like a motorist or train driver.
Simon. I would love home dialysis, but don't think I could needle myself, either accurately or just being able to do it to myself! I'd kill myself someway by messing it up it I was at home. It's a lot more difficult to get home dialysis in UK.
Sugar lump - thanks sweetie.x

[Simon Dog]

Simon. I would love home dialysis, but don't think I could needle myself, either accurately or just being able to do it to myself! I'd kill myself someway by messing it up it I was at home. It's a lot more difficult to get home dialysis in UK.

Unless you have a physical or mental disability, you can do it.    Once you learn it's much safer than having a different nurse or tech do it each time you go to the clinic.

I knew I would hate doing it.   I was right    But, I learned, got very good at it, and while I still don't like doing it (anyone who does needs a psych consult), it beats the heck out of the alternatives (death and letting a clinic worker do it).    When I am traveling or in the hospital, I insist on doing the needle work myself as I feel much safer.

[Sibella]

I just finished reading Atul Gawande's "Being Mortal: Medicine and What Matters Most in the End" and found it very helpful in creating a structure for my thoughts about how much medical intervention is right for me. I recommend it highly.