Making sense of it all

I’ve had a few days back at home to let all the information from last week sink in.

I still don’t know what or how to think, to be honest. I have no option right now but to get on with my life and wait for more answers. The amazing news is I’m too healthy for a heart transplant at the moment, which is fantastic. However on the flip side, the more they let my heart deteriorate the greater impact this will have on my liver. I don’t want to have to have a heart and a liver transplant as there are more risks involved, both organs need to come from the same donor, and only around four have been done in the UK ever. Not only that, but because I have had open heart surgery in the past, a transplant would be much more risky for me.

For every person on the heart transplant waiting list, I have read that roughly one in six people don’t get a new heart and die waiting. One in four (25-30%) of congenital heart patients don’t survive a successful transplant, dying during or shortly afterwards. These are scary statistics. That said, it gives me more reason to fight.

In the meantime, there is talk of doing a different open heart surgery operation to prolong my transplant. My system is so complicated but the idea is to open up an obstruction – although medical professionals cannot agree whether this would be the best option or too much of a risk. Another cardiac catheter is needed to determine this, as the ECHO I had, revealed the obstruction could possibly be problematic.

I’m sorry, I’m not explaining this very well. But that’s only because I don’t fully understand it myself.

Anyway, the next step is to wait for cardiac catheter number two... There is going to be a bit of a wait on this, owing to the fact the machines and consultants get booked up weeks in advance, and there is uncertainty around whether I should have it done in Newcastle or London.

It is not until I have had my second cardiac catheter that I will know whether the second open heart surgery will even be possible.

It’s not the operations that scare me, it’s the waiting. I have reoccurring nightmares that I’ll go to hospital and they will tell me I’m too late for a transplant and I’ve missed the window of opportunity. I’ve noticed I’m more breathless and my lips go much bluer (see pic at bottom) for no reason at all.

People ask how I am and my natural response is, “Yeah, I’m ok, it’s been tough but I’m ok”. There are times I’m optimistic and believe I will be ok, and there are other times I crumble inside. I don’t want to face what’s to come – it’s unfair, I want to be normal. I’m told the angry feelings are natural but I’m not an angry person. In the end, it just comes out in tears.

I struggle with myself. My mind is active yet my body gets tired. For the first time in my life, I’m afraid of what’s to come, of losing my independence and having to rely – physically – on others. I get irritated with myself for not being able to do what I used to be able to, and that irritation turns to fear and sadness. I guess it’s grief. I have to go through the stages of grief until I come to terms with what’s happening. I can neither believe it, nor want to, but have no option but to process it, because I can’t run away from it.

I watched a documentary about heart transplants which was filmed in Newcastle where I was last week and will hopefully have my transplant. Watch it, it’s sad but incredible. In it, there is a lady who has had previous heart surgery. Sadly she does not make it, but you really see the amazing determination we all have in us to live.

https://www.bbc.co.uk/programmes/b0b3gfth

I’m not all doom and gloom. I want to raise awareness and that’s what I’ll continue doing with a smile on my face and hope in my heart. None of us know what life is going to throw at us so I’m carrying on living life, seeing friends, laughing and making memories.

Thank you for your continued support xx