Transplant diary 1

On January 27th this year, I was fortunate enough to receive a kidney transplant after just over 2 years on the waiting list and 6 months on dialysis. This is the first part of my record of the experience.

No one likes the middle-of-the-night phone call, do they? You jerk awake and shoot out of bed to answer, all the while running through your mental tick list of potential scenarios involving serious illness, accident or death.  That being said, when my own phone rang at 4am one Friday at the end of January 2017, my first thought was ‘Better get that,’ swiftly followed by ‘Oops, I can’t.’  I was on overnight dialysis, and although I was well versed in the routine for detaching myself from the machine, it wasn’t something that could be accomplished within the 8 rings before the answerphone kicked in.  The caller hung up, but as I lay there with my heart thumping, I noticed that the light from my mobile next to the bed was also flashing.  The news that followed was, thankfully, not about accident or death: the caller was one of the transplant coordinators at my local renal unit telling me they had a kidney for me. Could I get myself ready to be collected by 5.30?

It helped a little, I suppose, that this was not the first such call that I had received. A similar call the previous September, albeit at the more sympathetic hour of 9 in the morning, had led to a day of waiting around, tests, and yet more waiting around in the renal ward before being told that the kidney was not good enough for transplantation.  Nonetheless, this time I spent a good 10 minutes staring blankly at the ceiling and mentally working through the things I ought to have been doing that day before moving into action. Work was at a frantically busy stage, and my team mate was about to go on maternity leave, so I even briefly considered saying ‘Thanks, but no,’ before realising just how dumb that would be. By 5.30, I had packed a bag with everything I might possibly need for a stay in hospital, shaved my legs (well, of course!) and done the previous night’s washing up, and all that was left to do was to jump in the waiting taxi and head off into the darkness.

Hospital routine marches to the beat of its own peculiar drum, and so it was that, having arrived at the renal ward at 6am, at 7pm I was still lying on my bed, hungry and thirsty and attractively attired in blue-and-white checked hospital gown and elasticated stockings and wondering if, once again, it was to be a no-go. There being no mobile phone signal in the ward, I had spent the day wandering around the hospital trying to update friends, family and work as to where I was and what was happening, and cancelling arrangements for the coming days. Periodically someone from the medical team would come and either take blood, give me an injection, feed me drugs or have a chat about what to expect, but come the afternoon most of the activity had tailed off. I was just resigning myself to the possibility that I might be sent home again when two nurses turned up and told me it was time to go to theatre.

Here’s something I have discovered about people’s expectations of how dialysis patients will react when they get to transplant. When I was called in for the transplant that never happened last September, two nurses in succession asked if I was excited. People know that being on dialysis can be hard and disruptive to normal life, so they think you’re bound to be ‘woop woop’ at the prospect of a transplant. Well, I wasn’t ‘woop, woop’, actually I was really scared.  One thing is certain once you have kidney failure:  from that point on and for the rest of your life, nothing is certain at all. A transplant can mean being relieved of the routine and restrictions of dialysis and a return, to a large degree, to ‘normal’ life. But I had started dialysis just 6 months earlier which was in itself a huge and difficult transition, and I had only recently begun to feel at ease with the new routine and the effect it had had on my body.  On top of that, it can take months to recover from a transplant and to adapt to a lifetime on a strict drugs regime. Transplants can also fail, and there are no guarantees of how long they will last – it’s not uncommon for a kidney patient to have more than one transplant in their lifetime.  As I tearfully explained to the anaesthetist while waiting to go into theatre, my family history doesn’t help much: my aunt almost died post-transplant back in the ‘90s, and my mum’s new kidney lasted just 8 years before it began to fail.  Both they and their middle sister ultimately died of the effects of renal disease.  The medical team who have looked after me in recent years have been brilliant, and the services efficient and well-organised. However, in my experience the focus is entirely on the physical aspects of treatment, with little or no attention paid to the emotional or psychological effects of going through such a huge life event; nobody asks you how you feel about what’s happening to – or being done to – your body. And all these things are hard to say when you know that the reason that you have this sudden chance at a new life is another family’s sudden and tragic loss of a loved one; I had chosen not to hope for a transplant for that very reason.  In the end, all I could do was choose to trust the medics who said that this was the best long-term solution for me, and grit my teeth and go ahead.

Coming round in the darkened recovery room after the transplant is a succession of blurred images.  I strain to see the clock, and realise that it is just after one in the morning. I have an intense pain in my right side and groin, and any attempt to move induces nausea.  My mouth is like sandpaper, and a nurse periodically offers me sips of water through a straw. The nurses want to give me a chest x-ray, which will involve lifting me up to put a metal plate behind me. Each time they go to move me, I ask them not to, but eventually they have to go ahead, and the movement makes me retch painfully into a cardboard bowl.  Once back on the ward, and despite the anaesthetic, I wake repeatedly as the monitors for my drip, heart and blood pressure ping and bing throughout the night.  That was day one.

Information about organ donation: https://www.organdonation.nhs.uk/

National Kidney Federation: http://www.kidney.org.uk/

Polycystic Kidney Disease Charity: http://www.pkdcharity.org.uk/

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One thought on “Transplant diary 1

  1. Louisa
    This is a thought provoking read as a nurse! As a friend it inspires me and challenges me to pray and do something, anything that may make this journey better. I don’t know what? Will you help me be a better friend? What can I do?
    I think this would be an excellent piece to publish in the renal literature, have you thought about sending it to the transplant team?

    Love you
    Karen

    Like

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