Dialysis or Transplant: optimism versus experience

I had my three-monthly appointment with my nephrologist on Tuesday.  Unlike many of the previous times I have sat in that chair, things seem to be going along OK.  My phosphate and calcium are vaguely under control; my haemoglobin is good, weight control, dialysis adequacy, blood pressure all on course.  And at a personal level, most days I feel about 4 out of 5 (five being the best) on my Life On Dialysis Wellbeing Scale.

Nothing to worry about; nothing to fix:  steady as she goes.

So, after some pleasant chit-chat, feeling pretty pleased with myself, I rose from the chair, to make for the door.

“There’s just one thing.”

(Don’t you hate that?)  Oh?  What thing?

You have been back on dialysis five years now.  Your transplant gave up the ghost in 2008 and you had the kidney out in 2010.

Yes…?

Its time you thought about another transplant.  You turned 60 last August.  Once you are on the transplant list, it may take 5 years to get a kidney.  If you keep putting it off, your age may become a factor in being selected to have one.

Also, though you feel well, dialysis doesn’t clean the blood as well as a kidney.  It leaves some toxins and harmful molecules behind that accumulate after five or more years and gradually wear you down.  Bones become brittle, skin gets thinner, muscles take longer to respond to exercise; that kind of thing.

You don’t have to do it now, but you should think seriously about going back on the transplant list.

My stomach fell to my bowels, and they turned to water.

Another transplant.

Transplants and I don’t seem to get on.  My first, from Julie, was massively rejected at the outset and failed after three months.  The doctors fought heroically, using large doses of old and new drugs that made me sicker than I had ever been.  I spent days pumped full of fluid that had nowhere to go, staring at the ceiling without a thought in my head.  I had bleeds in scary places, examinations via every orifice, biopsies galore.  Finally I went back to theatre and the dead and toxic kidney was removed.

It took me a year to recover.

The second transplant, 10 years later, was a very similar ride.  Rejection, more drugs, more tests, biopsies, bloods, unexpected unpleasant things.  During the transplant operation, the surgeon cut some nerves that removed most touch and feel sensation from my left foot.  With no immune system to speak of I caught many bugs, including one that attacks the brain.  More drugs fought it off, but not before I lost the sight of my left eye.  Eventually the kidney was stabilised and I went home.  But damaged by the rejection episodes, it limped along for three years.  Then it failed and I returned gratefully to dialysis.

Both transplants were tough for me, but they were diabolical for Julie and our kids.

So I reminded my nephrologist of the many reasons why we are both quite shy of another transplant.

I know, he said, but the fact remains that statistically, people live longer with a transplant that they do on dialysis.

All statistics have outliers that defy the trend.  Maybe I can be one of them?

Maybe.  That’s a judgement for you to make.  Besides, you have a choice when the kidney is offered to you.  If it’s not a really good match, don’t take it.  Hold out for a better match.

Julie and I discussed it that night.

She’s as nervous as I am, but thinks I should go back on the list and be very picky about the kidney.  It makes sense to stay in the game, especially with that safety valve.

I think she’s right, but I still dread the day I’m back on that trolley being wheeled into theatre.  And waking up with a body full of fluid trying to kick start the kidney.  And the hospital routine, smells and tastes.  And sleeping alone.

But I’ll start the process.  I’ll have plenty of time to get used to the idea.

Maybe it will work out OK.

15 thoughts on “Dialysis or Transplant: optimism versus experience

  1. You are a very brave man. I have a 32year old daughter who lives at home so that i can do her haemodialsis 4 night’s a week. We have been doing it for just under a year and before that she did 3 times a day at the renal unit . She seems to fair better with the home haemodialsis, and is reluctant to think about a transplant yet . She has only had renal failure for just over two years.i have been reading your blog for a while now and it has really helped me to understand a lot of things. Thank you so much for taking the time to help other people in this situation.

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  2. Good luck with the waiting and transplant when it comes. After my transplant failed, and I was told it was a good match, this time around (if I ever get one) the kidney needs to be a perfect match as far as I am concerned. Ros

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  3. Good luck! I so hope this one goes better for you than the others have 🙂 Although I’ve never had a transplant before so know nothing really about rejection, my doctors are trying to arrange one from my uncle and I’m already nervous so I vaguely know how you feel! These posts are great, thanks 🙂

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  4. Hope it all works out for you. I took the decision some time ago not to expect a kidney. This is my second period of dialysis since my transplant failed after 7 great years. I have been dialysing now for 13 years this time around, and do daily dialysis – helps you to feel great. I have antibodies remaining from the previous transplant so likely I would not have a successful transplant in the future. The point of this comment, to underline your first thoughts – it is about making the decisions for yourself about what you expect and are prepared to accept – once you have that straight in your head, then the rest of your life becomes a lot easier.

    I see others on home hemo who still treat it like they were in a unit and just do the 4 hours 3 times a week – somewhat missing the point that if you do not have a transplant then make dialysis as effective as possible – they need to get their heads around their situation and make the most of it. And…. a transplant is not always the best solution!

    Keep well, and trust for you that third time is lucky! There are many great stories of people who have had their transplants who live well, and long! Hoping yours goes the same way! Steve.

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    • Thanks Steve. I appreciate you thoughts It’s always encouraging to know that we are definitely not Robinson Crusoe. There’s always someone who’s been there and still around to tell the tale. Greg

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  5. Im going for my 3rd transplant soon (from my partner) hope all goes well for yours. Lets be positive and hope for the best!

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  6. Greg, discuss with your doctor, if and when they will have molecular level cross matching in place for deceased donor kidneys. As a sensitised candidate, you need this in place to have a better chance of a better transplant outcome. It’s an expensive process that takes time to do, time deceased kidneys don’t have. It’s part of the protocol for living donor and paired exchange programs. However, they’re working on speeding up the process and approving it for the deceased donor program. But it could still be 12 months before approval is granted.

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  7. Pingback: Struck by Lightning on Dialysis | Big D and Me

  8. I just recently turned 65 and I have been on dialysis for 18 months now. I have polycystic kidney disease and one of my larger kidneys is causing me grief. I have been in ER several times in the past months with nasty pain. Also, the kidney sits on my stomach and very often I can’t eat. The Urologist wants to take it out – but I guess am nervous. Has anyone else been through this and could give me some advice. What are the pros and cons and would they recommend it? I live in Calgary, AB, Canada. Thank you.
    Greg, Thank you much for your wonderful blog and advice.

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    • Hi Susan. I can only speak from my experience. I had my first kidney out when I was 48. It had grown progressively bigger (due to damage from trauma, it was not polycystic), progressively less functional and more painful. My doctor recommended removal. I agreed and I had no problems. My transplanted kidney kicked the bucket 8 years ago, and made me quite unwell until it was removed 3 years ago. For me, if it is not functioning and causing trouble, have it out. Greg

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