I had a heart transplant 15 years ago and although I’ve had a range of questions over the years, there are still some that most people are reluctant to ask me
Nearly 15 years ago, when I was just 11 years-old, I had a heart transplant. The heart I was born with was completely removed from my body and as per the words of my brutally honest yet legendary doctor, “put in the bin”. In its place, I received the heart of a complete stranger. It saved my life and has been beating inside me ever since.
Now, it’s not every day that you meet a person who has had a heart transplant, so there are probably a few questions already swimming around your head. There are some that you might want to ask me if we met in person, but are nervous about saying out loud.
I had the transplant because I was born with congenital heart disease and went into heart failure after a failed surgery. And yes, I’ll be on medication for the rest of my life that lowers my immune system to ensure I don’t reject my ‘new’ heart. And yes, I am really well now and living a happy healthy life and can do pretty much all the things that you can do.
READ MORE: Five myths about organ donation busted – from religious concerns to cancer scare
But there are also a few questions that you might think of that you perhaps wouldn’t ask me directly. Maybe its from fear of seeming intrusive or perhaps you wouldn’t want to appear ill-informed. Well, I am not easily offended and I personally think that we should talk about organ donation and transplants more than we already do, especially if it means educating people and breaking the taboo that often sits around the subject. This means, I am always willing to answer even some of the most unusual questions. So, here are the answers to five of them that you might want to ask me but probably never would.
Have you picked up traits from your donor?
We’ll start with an easy one. There is a common myth that when a person has an organ transplant, they pick up personality traits and characteristics from their donors. For instance, a person with a new liver may suddenly start eating a food they’ve never liked before or someone with a new set of lungs is suddenly into hardcore rock music despite being a classics fan before, all because their donor was. As most of know, our personality and preferences as well as our memories come from our brains. So unless someone has had a brain transplant – and no, that is not currently possible – then the answer to this question is a no. At least it definitely is for me.
Do you feel guilty?
Delving a little bit deeper here, this is something I have actually been asked a few times. Of course, it is in reference to the fact that my donor was deceased when they gave me their heart. In fact, most transplants are facilitated this way with living donor transplantation representing just 21% of transplant activity. It goes without saying that a heart can only be donated by someone who doesn’t need it anymore because they are no longer alive. Considering I was on my death bed when I received my heart and it literally saved my life, people often wonder whether I feel guilty about the fact that someone had to die in order for me to live.
The answer is no – and that’s because my donor dying and me getting a heart transplant were actually two completely sperate events. It is only after a person has been confirmed to be dead that organ donation is even discussed. My donor was confirmed as brain dead and their family would have been told that there was no chance they would live. Donation would have been discussed and its likely that my donor would have already expressed their wishes to donate at some point during their life, allowing their family to make that decision on their behalf. Then, I was found as a match and received the gift of life. Whether my donor had donated or not, they still would have tragically passed away when they did. But in this way, I am able to continue living my life because of them and in honour of them. For that, I will be forever grateful.
Will you have to have another heart transplant?
The answer to this is… who knows? If the statistics are anything to go by, then I most likely won’t go on to have a second heart transplant. That is because only around 2 or 3 people a year have second heart transplants in the UK. For the Royal Papworth Hospital, which is one of the busiest UK transplant centres, that translates to just 1.8% of their heart transplant patients ever having been re-transplanted. Sadly, this is because it is very uncommon for patients to be fit enough for a second heart transplant by the time they need one and so it is only possible in a very small number of people.
How long will you live?
Much in the same vein as the last question, there really is no way of knowing how long my transplanted heart will stay healthy. According to the stats, the average post-transplant survival rate in the UK is around 14 years whereas about 21% of patients live 20 years with their new hearts according to the international registry. I’ll celebrate my 15 year anniversary this September but I’m showing no signs of slowing down any time soon. I personally try not to focus on the figures or dwell on what the evidence predicts for me and put all my energy into just keeping myself healthy and making sure I make the most of every day I do get to be alive and thriving. I can only hope that I’ll get to keep enjoying my wonderful life for as long as this. The truth is, transplant or not, that’s all any of us can do.
Can you have kids?
Yes! There is no reason a heart transplant would ever stop me from having children as long as I am still healthy when I eventually get around to be ready for something like that. Pregnancy after organ transplantation does require a little more forward planning than usual, however, and it will be important for me to let my medical team know when I am ready. In some instances, medication might have to be changed for the duration of pregnancy and breastfeeding and I might need closer monitoring than the average expectant mother.
Although my heart condition was congenital, it wasn’t hereditary and so there is no reason a child of mine would have the same. Genetic screening, however, could be the answer to guaranteeing this in the future. But, all in all, plenty of people I know who have had transplants now have their own happy families and with a bit of luck, I could one day be the same.
All in all, living with a heart transplant is full of the unknown and plenty of simply hoping for the best. But, for me, its also a life full of excitement and gratitude. I love being alive and I appreciate how magic it is that I get to be alive – even if that does mean I don’t know what the future holds. But then again, do any of us? Oh and if you happen to see me around, don’t be afraid to ask me a question, even the weirdest one you have.
