Getting a kidney transplant from a loved one

I’ve had kidney problems since 1972, when I was 20.  Through some luck and good management (by Dr John Dawborn, my renal specialist), I hung on to my free and easy life style until June 1995, when I finally joined the BigD club.  Julie and I had been married for 21 years and we had three children.  Neither of us was happy about the BigD and me, and after much thought, Julie conceived a cunning plan to get me out: she would give me one of her kidneys if she was compatible. 

She was!  So began the long workup process: blood tests, counselling, psychological interviews, physicals, transplant workshops, the lot.  At this time, living donor transplants were rare (donor kidneys were mostly from cadavers), and we were the Austin Hospital’s first husband – wife transplant. 

Then, in November 95, after only six months on dialysis, we found ourselves in adjacent trolleys, being wheeled to theatre, first Julie, then an hour or so later, me.  We went in to the operation with high hopes and no thought of failure.  It was to be a real life fairy story, with me off dialysis after receiving a unique, life-changing gift from Julie.  It was an exciting time.

Apart from the family trauma (our children were then aged 15, 17 and 19 had the worry of both parents in hospital for serious operations), the operations went well.  Julie recovered quickly, as did I.  

However, within two days my body rejected the kidney.  In spite of massive doses of drugs (and the harsh side effects), the toxic kidney was removed after a very unpleasant roller coaster ride, three months later.  As part of the closure process, we asked to see it.  It arrived a few hours later in an otherwise empty Styrofoam six pack cooler.  It was small, black, sad and quite dead.  We said our goodbyes.  It was a difficult time for both of us.  

I went back on dialysis.  

But take heart, this is not typical.  Failure rates at that time were around five percent, are less now and continue to fall.  And I have since had a successful transplant. 

So, what are the lessons from my experience? 

Firstly, while no two people are alike, expect rejection.   Some of us reject right from the outset, others breeze through the first few weeks/months.  But either way, don’t think you are in the clear once you leave the hospital.  On average, heart transplant patients have 2.5 rejection episodes in the first year.  Kidney transplants are no different.  

Secondly, expect infection.  Your immune system will be heavily suppressed.  While you take as much care as possible, you should also expect some kind of infection during that early period, typically one that your body would normally brush off.  

Chances are you will experience both rejection and infection in the first year.  Their severity will vary depending on your personal make up and any random factor you care to mention.  But, if you are mentally prepared, and something happens, you are ready.  If nothing happens, well that’s one of life’s little bonuses. 

Thirdly, persevere.  There may be days when you wonder what the hell you have done.  You find you are in limbo for hours, sitting and waiting; sometimes in pain, sometime not.  I called these days donkey days, where you keep going, even when you are unsure why.  But take heart!  Things improve eventually, either with the kidney, or without it (but mostly with it).  

So, if you take home one thing from my experience, it’s this:  a kidney transplant is another form of treatment, effective, but with side effects; it is not a cure. 

If you can think of it like that, you are ready to start your transplant journey.

Next post: Dialysis and holiday travel

3 thoughts on “Getting a kidney transplant from a loved one

  1. Memories come flooding back…it was an unforgettable time for us all…we all learnt so much about transplants, kidneys, the Austin and each other…the first time for anything becomes the reference point for the second and consequent times….it enables you to advise and prepare others and so reduce that ‘first time fear’….good valuable advice….lots love Marg x

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  2. The Donor’s perspective.

    When we found out Greg had to start dialysis we were also told there was another option, a living donor transplant. I though that if I was compatible then I would certainly give him a kidney. I did not really think I would be compatible, but I started going through the process.

    I though the process was to see if I was compatible, so every time I went for a test, or investigation or medical review I asked only questions about compatibility. At the end of this process, which took about twelve months, I found out I was compatible and that I could donate a kidney to Greg, as we were a good match. When I found this out I realized that the process I had just been through had two objectives: to see if I was compatible and to find out what it meant for me to donate a kidney. It was only at that stage I realised that I really had no idea what I was getting myself into as I hadn’t asked a single donation-related question on the way.

    Anyway I donated the kidney.

    The first thing Greg said to me after the operation was “my teeth don’t hurt”. Greg had been having terrible teeth pain, it would stop him dead in this tracks. He had been to doctors and dentists and no one could explain the pain or offer any suggestions to ease the pain. The pain was not there all the time but when it came, it was terrible. I had never seen him in pain like that before and he previously experienced lots of pain for one thing or anther. No one could say what was causing the pain, in fact I felt everyone just dismissed it and as long as Greg did not mention it they would not have to worry about it. So for me to hear that Greg was not having the pain was music to my ears!

    The kidney started rejecting within the first few days. The next month or so was probably the worst time in our lives but once the kidney came out things started to settle, with Greg having regular dialysis he started to feel better and gradually returned to normal. Even though the kidney did not work as it was expected to, my kidney relieved the teeth pain and he has never had that pain again. So for me it was a successful transplant and I would do it again.

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  3. So often the outcome is not what we expect but sort of to the side of the main plan and hindsight gives us a great opportunity to reevaluate what was good or why something didn’t work out as expected. It WAS a wonderful result that the teeth pain disappeared (Greg will back me up on that I am sure!) and yet in all the drama that followed it could have been dismissed. And yet when we look back it was as central to Greg’s life as dialysis…so thanks for your perspective and insight Julie …love Marg x

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