Thriving on the heart transplant pathway
Empower - Share - Demystify
28th February 2025
February is Heart Month - What's the big picture for heart transplant in the UK?
So imagine that you are assessed as needing a heart transplant. Having got over the initial shock, I imagine that most people think that they then go home, pack a go bag with their pyjamas and a toothbrush and wait for a phone call.
Not quite.
Whilst it CAN happen that way and does happen, the reality is that some patients will be admitted to hospital to await their operation.
According to the February 2025 statistics from the NHS, there are over 300 people in the UK awaiting a heart transplant. The majority of those are on the so called "routine" list, typically waiting at home and regularly monitored for any change in their health.
A smaller cohort of patients will be admitted to the "urgent" list, as and when their health meets certain criteria. These patients will usually (but not always) be admitted into hospital to wait. They may need certain therapies such as powerful drugs to support the heart, which require supervision.
An even smaller cohort may reach the criteria for the "super urgent" list, where, as the name suggests, the need for a transplant is of the highest order.
There are 7 centres for heart transplant in the UK, these are Birmingham, Glasgow, Great Ormond Street, Royal Brompton & Harefield, Manchester, Newcastle and Royal Papworth. Of these, children are seen at Newcastle and GOSH. If you are an adult and were born with your heart condition, you will likely be referred to Newcastle, although there are exceptions.
The time that patients (on the urgent list) need to wait for their operation can vary enormously, from a few days, to over a year in rare cases. There are many patient characteristics that can influence the waiting time, from body size and blood type to the inherent levels of antibodies that each of us have.
One of the limiting factors for reducing the numbers on the waiting list is the availability of suitable donors. You may be aware that the law changed in the UK in 2019, whereby unless you are in an excluded group, or have already opted out, it will be considered that you agree to donate your organs when you die. (Organ donation (deemed consent) Act 2019.)
So you might be thinking "what's the problem? Surely there must be enough organs to go around?" It's a little more complicated, in that often the donated heart may not turn out to be suitable for transplant. In addition, even with deemed consent, healthcare professionals will usually still consult with the deceased person's family to discuss organ donation and address any concerns that they may have. Therefore, ultimately, the family have the discretion to say whether donation may or may not go ahead. In my own case, I think it was on my second or third "offer" of a heart, where initially consent had been given, only to be rescinded hours later, on the decision of the family. That was a fun day, although I respect the family's decision.
Statistics show that where a individual has specifically expressed their wishes to their family beforehand, the probability of donation increases substantially. This is my main message for this month, which happens to be Heart month globally.
If you are someone who is minded to be an organ donor, and potentially save or enhance many other lives, I would strongly encourage you to Share Your Wishes with your nearest and dearest. Having been what I've been through and had the privilege to know many other transplant patients, there isn't one who has not had their lives transformed by donation and they can't speak highly enough of the kindness and generosity of the donor and their families. It is literally the greatest gift of all.
You can enhance your commitment to becoming a donor by registering for organ donation, online or via the NHS App.
For this month's tune, I heard this spiritual Whitney banger recently and it strongly resonated with the transplant journey. Step by step, inch by inch, mile by mile, go your own way. Whitney even sneaks in a cardiology reference when she sings "I know you're blue." Well, Whitney, I used to be, but actually I'm not any more, but thanks for asking.
Until next time, Spring is on it's way - Peace!
Comments