Dialysis or Transplant: the Big Decision

When I first went on dialysis, in 1995, I was in shock.  Though I had been building up to it for at least five years, the reality of the needles, the machine and the time it took from my life was almost overwhelming.  It was for Julie too: suddenly our life together was short-changed.

Everyone in this emotional cauldron feels the same, and like everyone, we cast around looking for any way we could make it all go away.

The obvious candidate was a kidney transplant.  When we looked into it, we quickly discovered the waiting list and that waiting time was measured in years, not months.  We also discovered the living donor scheme, where a generous friend or relative would donate one of their healthy kidneys to their friend or relative with kidney failure.

This certainly represented a way out, but there was no way I wanted to put a perfectly healthy loved one through the trauma of removing a kidney, and face the danger of joining me on dialysis if their remaining kidney failed.

But Julie felt differently: she felt that if she donated a kidney we could be whole again as a couple and have our life together returned to us.  So she offered me one of her kidneys.

After a while, I agreed.  After all, it seemed a common sense way to return to normal.  It was blindingly clear to us that a transplant was preferable to dialysis.

So we went through the live donor process.  We talked with my nephrologist; we were each interviewed twice by the transplant psychologist; we attended transplant education sessions with other couples going through the process.  We listened to people who had transplants (all of whom were better off because of it).

Talking to my nephrologist two messages were designed to temper our enthusiasm:

  • Firstly, a transplant was not a cure, but simply another method of treatment.  I still faced a lifetime of anti-rejection drugs and their side effects.  “So what?” I thought that’s better than 15 plus hours per week on dialysis for the rest of my life.
  • Secondly, not all transplants were a success.  I think the percentage was that around 85% of transplanted kidneys would still be working in five years.  OK, even five years sounds good to me.

After all, all those other people had transplants that had changed their lives, so why not us?

Within six months, we were ready.  We arranged for friends to mind our three children, were admitted, slept in beds next to each other and the following morning, were wheeled into theatre.  Next, I awoke after three hours of anaesthetic blackness.  Julie was already back in the ward.

The first thing I felt was that my teeth were back to normal.  For the previous six months, my teeth had become progressively more sensitive to cold.  Even a small sip of cold water would make my teeth ache like fury.  It would build up slowly and last about an hour.  I have rarely had such pain, and no amount of pain relief had any effect.  I was completely disabled.  Dentists could find nothing.  It got to a point where I was seriously considering having all my teeth removed if that would make the pain go away.  Then I had the transplant, and I knew that my teeth had returned to normal as soon as I awoke.  Obviously, it was caused by the kidney failure, but I have never discovered why.  After the transplant, I didn’t care.

I was sent to an isolation ward (the transplant drugs killed off most of my immune system, so the isolation was to protect me, not the rest of the ward) and several litres fluid were pumped into me to put pressure on the new kidney to get started.  I blew up like a balloon full of water and felt like one too.  I had a catheter running from my bladder to drain my urine as it was created.  And I had a regimen of anti-rejection drugs that would have dropped a gorilla.

Gradually the kidney began producing urine, and after a couple of days, everything looked on track.  Unfortunately, on the third day I had a large rejection episode.  The urine slowed and I felt lousy.  I was given new anti-rejection drugs, which made me worse.  The rejection slowed.  This happened several times.  Each time the rejection damaged the kidney.

I stayed in the ward for about a month, went home, then came back with more rejection.  I had three kidney biopsies (where they push a little bitey needle through the abdomen to the kidney and take a small bite, which is then examined for signs of rejection).  My kidney got and remained quite sore (and was especially sensitive to biopsies!).  This surprised me since it wasn’t part of me, it was just connected to me.  But presumably, there are nerve endings connected as well.

I had a large number of tests, unexpected bleeds and I was very weak, Julie was worried that I would not get through.  I was too sick to care.

Eventually, after three months the kidney was so painful and I was so sick that I was taken back to theatre and it was removed.  Julie and I asked to see it, to say our goodbyes.  They brought it to us in a polystyrene box.  It was black, shrivelled and rocky.  There were tears.

So ended the first transplant.  There was one upside.  My teeth were (and touch wood) they will remain pain-free and normal.  That was my big benefit from Julie’s kidney.

I returned to dialysis, not happy to be there, but relieved that the ordeal was over.  Gradually I recovered, and I settled into the BigD routine and returned to work.  After about a year, I was well enough to travel and start living again.  But I decided that I would not line up for another transplant for quite a while, if ever.

After about five years, I had heard that transplant techniques and technology had improved, so I decided that I would try again, and went back on the transplant list.  In July 2005, ten years after the first transplant, I got a call to say that there was a deceased donor kidney available for me, and should I choose to accept it, I must be at the hospital by 6pm that day.

The following morning I was wheeled into theatre to start the process again.

Unfortunately, within a day the rejection started again.  So did the medical responses: drugs, drugs and more drugs, tests and biopsies.  I was there another month.  When I got home I caught some nasty bug and went straight back.  More drugs and treatments.  For some reason, I lost the sight of one eye.  I was weak and fading again.  Julie was there every day and again worried that I would not make it.  But I did.

The new kidney was again damaged by the rejection and it lasted for only three years.  But I am very grateful for those years.  Julie made sure we did things while the sun shone.  We travelled and generally enjoyed our freedom.  That was the promise of the transplant, and it delivered.

In 2008, I went back on the BigD and again settled into a routine.  It took a year or so to get well again.  Now I dialyse five times a week.  It keeps me fit and gives me the rest of each day to live life just like any other normal healthy person.

Every now and then someone asks me: Is a transplant preferable to dialysis? Would you have another transplant?  My answer is no.  At least not yet.  I am well and stable and my BigD routine works for me.  For me, the risk is not worth it.

Maybe when medical science can offer a perfect match (possibly grown from my own stem cells) or if a new miracle technique appears that needs no anti-rejection drugs.  But not yet.

Why am I writing this?  Because I don’t know if it would have affected our decision, but maybe some people would like to read it before making theirs.

16 thoughts on “Dialysis or Transplant: the Big Decision

  1. Great testimony about a tough topic! Thanks for this posting. I pondered the issue when I began dialysis in 2008 and determined that I’d leave that to the younger people. At 60 (now) I don’t want to take the opportunity away from some who could really use a kidney. I’m happy to be on dialysis and probably can last a while. I’ve read of many going 20, 30 and forty years. For the 15 hours a week, it’s fine with me.

    If you don’t mind, I’d like to link to this posting from my blogsite, at http://www.DevonTexas.WordPress.com. It would be helpful to my readers and relevant to my “all things about dialysis” blog.

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      • I created a guest post for your “Dialysis and Transplant” post on my blog scheduled for tomorrow. I’m sending my readers to your blog. I hope that’s okay

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  2. Wow what a story I’ve been on dialysis for 4 yrs and on the transplant list for almost 8 years I am waiting for my first transplant. I never heard a story like ur side of transplant. It’s compelling. Thank u so much for sharing!

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  3. great post! my husband and i have been living with his End Stage Renal Failure, dialysis, transplant, dialysis again after the failure, and now with 2 toddlers. thank you for sharing your experience and putting words to why transplant is not the end all be all that everyone thinks it is.

    may i also link back to your post from my site? http://eleisawifelife.wordpress.com/about/

    I’d also like to post your blogpost on my facebook wall. It really hits home. and also why I have subscribed to your blog. If you approve this comment can I assume it’s ok? even if you don’t, i’m glad that you can read my comment and know that your posts make us feel that we are not alone in some of the crazy emotions that are tied to the Big D.

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    • Thanks Eleisa. Please feel free to add the post to your Facebook page. I will be showing your blog to my wife. I’m sure you both have a lot in common! Regards, Greg

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  4. Pingback: Dialysis or Transplant – Which is the lessor evil/better salvation? « eleisawifelife

  5. I was interested to read of your experiences, and I am sorry to learn about your failed transplants. I have been a patient since I was 15 (30+ years ago now) and my thoughts regarding transplant are this. Dialysis is ok – it keeps you alive; but you are not living. This is my 3rd spell on dialysis after my 2nd transplant failed (after 20 years) and I can’t complain. When I attend haemodialysis I get talking to the other patients and many are either afraid of transplantation, or stuck in the routine of dialysis and are not sure whether they would accept a transplant if it appeared.

    I know transplantation is a risk, and there are no guarantees – such is life. But it is the only chance we have at the moment. Yes, one great day stem cells and pig transplants may just be what the doctor ordered. But I can’t wait that long. I detest what renal failure does to you; I can’t think properly, I have no energy, and other parts of my body start playing up because of it!

    I am very, very lucky that my partner and my adopted sister are both good matches for a live donor transplant next year. I know things can go wrong with transplantation and surgery – but to feel great, to be a fully functioning part of my family again, and be able to drink and eat freely would simply be the best! Good luck to all waiting for a transplant…

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    • thanks for sharing your perspective too paul!

      my husband feels the same way “I detest what renal failure does to you; I can’t think properly, I have no energy, and other parts of my body start playing up because of it!”.

      i don’t have as much of an opportunity to discuss as you mentioned “When I attend haemodialysis I get talking to the other patients and many are either afraid of transplantation, or stuck in the routine of dialysis and are not sure whether they would accept a transplant if it appeared.” but you hit the nail on the head on how I feel. I am afraid. But, i’m not the one who has to do the dialysis, so i try to keep my fears to myself and don’t share them with my husband.

      I share them in my own blog as a way to vent, document, etc my journey as the care-giver/wife/. you can read it here if you care to read:
      http://eleisawifelife.wordpress.com/2012/10/14/dialysis-or-transplant-which-is-the-lessor-evilbetter-salvation/

      you made a point has really struck a cord in my hear and to conquer some of those fears: “Dialysis is ok – it keeps you alive; but you are not living.”
      it will change the way i think, feel, and maybe our lives.

      Thanks Greg for starting this discussion with a fantastic post!

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  6. THANK YOU so much for this post, Greg!! We have recently been informed my bf is not a candidate for transplant, so hearing over and over about the wonders of transplantation over dialysis can be disheartening. Thank you for writing about the other side of the story.

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  7. Pingback: #Dialysis or Transplant – Guest Blog | DevonTexas

  8. Great post, Greg!! I got to you through Devon Texas a co-Ambassador with DPC. Most people look at a transplant as a cure all in the beginning, but as you so aptly commented, it is another treatment with its own problems and issues, including rejection. I visited the hospital in my city for an evaluation and never got past the interview with the surgeon. My other conditions and age, I’m sure made me ineligible for a transplant and it was over in fifteen minutes. I am happy with the life I am able to live on dialysis and just consider it almost like a social morning with friends. It is my belief that as many people as we can educate on every aspect of this horrible, life-altering disease the better. As an advocate for kidney disease education to all, healthy or already having CKD, I want to say thank you for speaking frankly about a very serious decision for anyone who is on dialysis. You have done a great service. Thanks!

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  9. Greg,
    Your story sounds like mine. When I read your blog it took me back to when I had BOTH of my transplants, one with my stepdad and the other with my brother. I am in the same boat with you. Would not want to go thru all that again. Both transplants only lasted less then two weeks and I got very sick from both. Sicker then I was on dialysis. I am happy and healthy on dialysis doing it at home every other day(home hemo). I too will wait for maybe one day when stem cell research will off something or maybe an artificial kidney with NO immune suppresents are available.
    Thanks for this post! I think it is food to get the real truth out there about these immune suppresent drugs. It is scary of all the side effects and high blood pressure I see with my friends that have transplants. Are you really healthier with a transplanted kidney and low immune system or heathlier on dialysis with those complications? I guess it is an individual decision BUT patients need to be educated on all areas when it comes to having a transplant:) thanks for your blog greg and I hope you continue to keep on keep’n on!!!!;))

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    • My first reaction when I found out that I had CKD was denial, because that was my doctor’s stance. When I started getting sicker I started studying dialysis, but was still told that it probably wouldn’t happen. It did, and quite dramatically, too. My kidneys failed acutely and by the time I got to the hospital I did not know who or what I was. I was rushed in for a permcath and then wheeled into dialysis. I didn’t know who I was for five days, but finally began to feel better when the toxins were getting out of my body and all the fluid I had put on in two weeks prior was leaving my body. A lot happened during those 12 days in the hospital, both physically and spiritually. My relationship with the Lord was so much closer and I began to see that this was His purpose for me. His Plan was for me to become an advocate for kidney patients. The education took a long time; much longer than if I had been instructed beforehand, talked to a person who could instruct me before my kidneys failed. I received nothing. But I am so glad that my Nephrology Practice has education classes finally while a person is first diagnosed.
      I am very happy to read about you and hope that we can stay connected and learn from each other about the challenges of this life-changing disease that we are involved in. Blessings to you and your family as you go through the daily challenges. My prayers are with you.

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  10. Thanks for the excellent post “Transplant or Dialysis” and for sharing all the comments it inspired. I am currently going through pre-transplant work-ups after 1 1/2 years on hemodialysis. The past year has been a stressful one. I underwent triple bypass surgery two months after I went on dialysis then found myself back on the table for a colsotomy last February.
    Despite this and my age — 72 — the doctors have assessed me as a prime candidate for transplant.
    Like several of your readers, I am reluctant to subject willing relatives to act as living donors and have some qualms about depriving a younger recipient of a deceased donation. At the same time, the doctors assure me the decisions are based on the possibility of successful outcome. And that, they say, is determined by the patient’s health, willingness to follow a diet, drug and exercise regime.
    The current three-afternoon-a-week treatment routine is inconvenient but by no means unbearable.
    The main problems involve severely restricting my ability to continuing teaching continuing ed courses and travel beyond two days. Then, there’s the challenge of complying with a renal AND ileostomy diet.

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    • I am delighted that after 1 1/2 years on dialysis you have been given the go ahead for a transplant. I was 68 when my doctor approached me about a transplant and set me up for the initial meeting with the surgeon and the beginning of the tests. I did not get out of the surgeon’s office. I was told that because of a double bypass in 1958 and the other health problems I have, he was going to put it truthfully to me. The answer was less than I expected……It was I wouldn’t be a good candidate for a transplant because of those things and my age. I exercised, even though I have a bum knee and my blood pressure had begun dropping during treatment even then. I am 70 now, still on dialysis, but I do believe things happen for a reason. The hospital here had lost a few older patients and have been turning people down still, even taking them off the list.

      My sincere congratulations on being a prime candidate and I want you to know that my prayers will be with you, Carl as you begin this journey of a lifetime. I just know you will do well, based on your activity level and travel. It will be great for you and life will be more precious than it has ever been.

      Take special care of yourself and just follow the instructions well. I know a lot of people with transplants that are doing well with a couple of diets, including the renal diet after dialysis and are living excellent lives.

      God Bless you and don’t forget that He is with you all the way.

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