As you will have seen from the dates, I have not written my blog in a while for three simple reasons:
1. I forgot my login details
2. I have been very busy (debatable)
3. Because I felt that what I had to say wasn't important...
All of which are just excuses and, in reality, the last one is quite the contrary. I have a piece of artwork hanging in my living room that reads “be stronger than your excuses” so here goes...
To tell this story properly it needs to be told in three parts.
Part one: Post-transplant
Part two: The six months after it
Part three: Where I am now
I tried to write all three pieces in one but it would’ve taken you all too long to read and you would’ve been bored, so here is part one!
Before I begin, I should point out that organ donation is one of the best things created by modern medicine. It saves thousands of lives a year but the more I talk to people who have received a transplant, the more I realise that everyone has absolutely no clue what to expect.
My story isn’t your average, run-of-the-mill transplant anecdote but there are bits in my next three posts that everyone who’s had a transplant will be able to relate to on some level. I feel it’s so important to talk about what happened and to show other patients (and in fairness, everyone else) that you’re not alone.
Plus, honesty is the best policy. Even though this wasn’t easy to write, and probably won’t be easy to read for some either, I feel that what I have to say is pivotal to transplantation. And, in fact, life.
The last time I published anything of note was over three years ago. I was sitting in a hospital chair attempting to get some sort of positivity from the story I was writing. I was six weeks post (second) transplant and I was still in hospital because my new kidney had rejected, twice. I was under the assumption, like most, that once I had my transplant my life would be wonderful. As if Jesus would put his healing hands on my forehead and give me the gift of immortality.
I had all these wild, romanticised ideas about what my life would be like post surgery. I would be healthy, happy, get to lead a normal life again. I could plan holidays without making them near a dialysis centre. And I could finally finish university without any hiccups. My life plan finally seemed to be coming together.
However, this was not meant to be.
I remember waking up after my transplant in the high dependency unit with all sorts of tubes coming out of me – never fun – with my Mum and my boyfriend at the time, A, sitting next to me.
I remember thinking morphine ruled (totally does) and being on the phone to all my friends and family telling them the good news.
They all cried – needless to say!
I remember swearing profusely at my then 12-year-old cousin along with many other family members telling them how “f**king awesome” morphine was.
I also remember waking up just out of surgery and having a chest X-ray done. I was lying in bed and a cluster of nurses appeared out of nowhere, lifted my back up and propped a metal plate underneath me. Now, bear in mind I’m like... less than an hour out of surgery, higher than Pete Doherty during most of the early noughties and my scar is new. Even though I was on a ton of pain killers (woohoo), I could still feel my stitches pulling apart. In pain, I dug my (very long) nails into the nurse that was holding me up. She shouted: “Ouch! That hurt.” To which I replied: “Sod off. I’ve just had a transplant. You got nothing on me!"
Still possibly one of the best things I’ve ever said.
Anyway, I digress!
As the days rolled out after the transplant and I became far more sober, it was agonisingly obvious that the kidney wasn’t working. Having slept for nearly four days (and spending one burping out all the gas they'd pumped into me during surgery), it was time to do some tests.
I was naive to be honest with you. I thought that everything was going fine, that it was just a lazy kidney and had taking after me. But sadly, it wasn’t.
Less than 12 hours later, two doctors swung open my hospital room door and told me: “Your kidney is failing so we’re going to give you anti-rejection drugs. This is your only opinion but you may die if we do it. Let us know your thoughts”.
Well... they didn’t say those exact words but they definitely said “die” and “only option” which is never reassuring.
They left me in a state of absolute panic. I called A and told him what the doctor said. I honestly thought I was going to die. This was it. If they couldn’t save my transplant I would be bereft of life, as John Cleese would say!
Frantically, A rushed to the hospital and was able to calm me down. Turns out, after minimal research(cheers Google), that the anti-rejection drug the doctors wanted to give me (that they said would kill me!) is given to almost every transplant patient in the US as a precaution. Honestly, doctors have no bedside manners sometimes...
This death-defying drug is known as ATG, antithymocyte immunoglobulin. It is essentially used to tear your immune system apart, which is exactly what it did to mine, so your kidney has a fighting chance.
For the next eight weeks I was in isolation battling severe rejection, contemplating life and wondering if it would all be worth it. Years later, I still asked myself that same question but we’ll get onto that in part three!
Because of the ATG, my immune system is still weak even now, over four years later. By May, 2019, I was on my eighth urine infection of the year. I was in hospital for six weeks just after New Year in 2019 with a stomach virus which made me lose almost 4kg in two weeks, and I was only 51kg to begin with. On top of that I had the flu. In 2018 I had the flu, numerous UTIs and a chest infection. The year before that was the same.
This story hasn’t been written to scare people out of getting a transplant, or becoming an organ donor. It’s to let them know what can happen and to not be scared if a transplant doesn’t go to plan. Life is life; it isn’t perfect.
I will no doubt be ill for a long time to come but I can’t help that. The way I look at it now is that everything will get easier as time goes by, not because I will actually get better but because I will learn to deal with what comes my way and remember that I’m no longer attached to a machine for 12 hours a week!
My advice for anyone waiting for a transplant is to get as much information as you can from transplant patients. You’ll have a better understanding of what may happen, how you might feel, what will happen if the kidney doesn’t work right away, all that jazz. And just because the kidney doesn’t work immediately doesn’t mean it’s rejecting. I know someone whose transplant didn’t kick in till eight months later and they spent that whole time on dialysis again.
If you’re worried or just want to speak to someone, contact your local kidney patient association (KPA) - almost every renal unit in the UK has one and I’m sure other countries will have an equivalent. Each KPA is made up of staff and patients who are there to support all renal patients, my one is the Grampian KPA. There are oodles of other incredible charities that can help as well, like Kidney Care UK, the National Kidney Federation and Kidney Kids Scotland for paediatric patients, as well as online patient groups.
Us organ failure patients get ourselves into all sorts of situations but know that whatever happens, it will get better. It’s tough but you are not alone!
