Organ Donation — why people who do, are spectacular human beings — part 2
The Op
It’s 9am — I’m in theatre prep and someone has asked me to recite my name and date of birth for what must be the 100th time that day.
I chat with the anesthetist and the surgeon (another phenomenal guy) while they inject the milky fluid into my veins, I count to four — I’m gone.
I’m awake.
There is no pain, but a lot of people saying my name and asking me how I feel I’m asleep again
Awake, people asking me to stay awake
I ask someone to call my wife Jo
I sleep
Upstairs, in my room — Jo and my parents are close to breaking point. My wife is a GP, and she knows that I should have been back in my room nine hours ago, nine. She rings the recovery room regularly, my parents follow her everywhere and so she can’t ask the questions she really wants to, because my folks are listening.
The question she really wants to ask is, “What the f**k has happened, he should have been back nine hours ago, is he conscious, is the new kidney working, is he breathing?”
Eventually I am brought from the recovery area back to my hospital room, at this point I have no idea I’m late, and no idea why Jo is looking at me in that way she does when something is very very wrong. (That reminds me, I need to write an article about why you should never ask your wife to dress up as a Bear and have sex in the woods*)
*I didn’t do this really, it’s just a joke.
Turns out my surgery didn’t go perfectly to plan and I lost two litres of blood, which is roughly two litres more than they expected, so that took some time to fix. Then in recovery the pain killers they gave me made me stop breathing quite a bit, so that took some fixing too. Credit where it’s due here, the Freeman Transplantation Unit is an incredible place to be treated, the staff and facilities there were faultless.
The Recovery
Recovery was slow and unpleasant, the wound is larger than I thought, there were tubes and drains everywhere — you’re catheterised and you lose a lot of your core strength when they open your abdomen with a scalpel like that.
Interesting fact, the kidney started working pretty much immediately, it created over 12 litres of urine in the first 24 hours. This is normal apparently but I tell my brother it’s because the kidney was so happy to be out of his body and into mine. So happy it went on a pissing frenzy. Seriously how many other articles are you going to read this year with the phrase ‘pissing frenzy’? Hmm?
The Rejection
A month passes, I get stronger ever day and I’m at home relaxing and thinking about when I can start a phased return to work. I’m planning to work from home to start with to avoid being exposed to all the germs of an open plan office with air con.
I’m taking a lot of pills, that sounds vague doesn’t it, what does ‘a lot’ really mean, this ladies and gents - is a lot of pills
Most of them are to dampen down my immune system so my body doesn’t reject the new kidney — Unfortunately, chronic long-term rejection is a 100% inevitable conclusion for recipients of a transplanted human kidney, whereas acute rejection can sometimes be avoided. But not for me.
It’s Monday 6th June now, and I have a kidney checkup today. I wake up, go the toilet, standing over the bowl and… nothing. This has never happened before in 38 years. I know immediately that this is going to be the start of a very bad time, I know instinctively that this means the kidney is in trouble, and when it’s in trouble, it doesn’t clean your blood or create urine as a waste by-product. I go straight to hospital.
My blood is checked, it’s rejection, and it’s bad. There are two forms of rejection you can get; Cellular and Vascular. Guess which one I have. That’s right — BOTH.
I’m given a super high dose of steroids, and this has an effect, just not the one we wanted. I develop a rather fat face, people refer to this as ‘Moon face’, unfortunately the steroids do nothing to halt the rejection. They also perform another central line, you remember the central line from part 1 right? The thing with the cold metal wires down your veins and someone opening your jugular up, of course you do.
The next two weeks are the most mentally draining and emotionally terrifying of my treatment. I’m given an extremely strong drug called Anti-thymocyte globulin ATG for short, every few days. When I get the drug, it takes about 8 hours to be infused into me, during those hours, I shiver uncontrollably, a nurse makes sure I’m watched as apparently there’s a chance you should shake yourself completely off the bed.
My routine involves worrying, being infused with drugs, checking blood results for improvement, pacing. Again, I’m terrified of loosing this incredible gift.
This drug, does exactly what it’s supposed to do, it’s like bleach for your immune system. It rapidly reduces the bodies ability to mount an immune response. The idea of course is that your body will stop attacking the kidney, and it does. It stops attacking any germs or any thing, and so I spent 10 days in a room with no-one really able to visit for fear of passing me a germ, it’s 10 days and I lose 10 kilos. Someone needs to tell Dr Xand van Tulleken about this stuff. But then again perhaps not, it’s expensive — I worked out that my ATG cost the NHS over £20,000 in ATG medicine costs alone. For that, and to all those involved in my care at the NHS I am, and always will be — incredibly grateful, they save my kidney. They saved my life.
Part 5 — The UK Organ donor register and how to join.
Everyone else I met at the dialysis ward wants and deserves a kidney, they want to get better, they’re polite and respectful to staff and desperate for a chance to rejoin normality. They are people from all walks of life and all ages.
There are over 5,500 people in the UK waiting for a kidney right now, and a few of those people will die each day and be replaced with new people looking for a kidney.
99.9% of people reading this article right now will have two functioning kidneys, they will never have imagined that they could live on only one perfectly normally. I’m not suggesting that it’s a small thing to give a kidney when you’re alive, not at all. It’s a massive deal, it takes enormous courage, a slightly cavalier attitude to risk, balls of pure titanium and a level of altruism few of us could muster on a good day
But what is a small thing, a really really small thing, a tiny thing, is to register your desire to help others in the event of your death. How spectacular a feeling it is, to know that when you pass away, you could help a number of people live a better life, giving them the gift of normality and freedom we often take for granted.
You can join the NHS Organ Donation register here, don’t let your wishes go undocumented. Register today
For those based in the US, this site will help you navigate to how your state handles Organ Donor registration
https://organdonor.gov/index.html
Fin.