Organ donation: why it matters

This week, 7 – 13 September 2020, is organ donation week.

On Christmas Day 2013, I received the most incredible gift; a new heart. In order for that to happen, my donor made the decision to allow their organs to be used after their death. A decision they would have taken when they were fit and well. Their family agreed to honour that decision on Christmas Eve when they were neck-deep in grief. Their kindness and generosity of spirit saved my life. It is something neither I nor my family and friends will ever forget and for which we remain forever grateful.

In my family we are doubly grateful. I’m not the first to be saved through heart transplantation. Over a decade earlier my father received a new heart, his at Easter. We consider ourselves an extraordinarily lucky family.

Nothing can prepare you for the sheer magnitude of being told you need a heart transplant. The idea of my living, beating (albeit not that well) heart being cut out of my body and replaced with that of another, was way too much for me to contemplate for any length of time (still is). The awareness that in order for me to have a chance of survival, to have a future, someone else was denied theirs. It never leaves me.

The best way for me to honour the life of my donor is to live mine to the very best of my ability. Of course there will always be time when I get stressed, or annoyed, or short-tempered, or down. There are days when I feel fat, or my hair annoys me, or I can’t find anything to wear. For a while I struggled with these feelings; believed I was somehow doing a disservice to the memory of my donor. For a time I put myself under too much pressure to be happy all the time. But not anymore. Now I accept all feelings as being part of who I am. The trick is not to dwell and to keep moving forwards.

In March next year, the organ donation system in Scotland is due to change to a soft opt out. Instead of signing up to be an organ donor, the onus will be on people who do not want to donate their organs to opt out. The hope is more organs will be available. I used to shudder at the reference to ‘organs’ and not to the person. Organ donation will always be an emotive issue. The reality is, the living, breathing person the potential donor once was, is no more. They live on in memories and shared recollections, not in body parts they no longer have a use for. I understand now why it makes sense to separate the personal from the medical.

When I first had my transplant the thought of my donor’s family and friends grieving for their loss haunted me. I struggled with whether I was ‘worth’ my new heart. Over time, and with the help of members of my medical team and the transplant clinic at the Golden Jubilee Hospital, I came to terms with the fact that my donor’s death had nothing to do with me. It happened regardless of my need for a new heart. The decision of my donor to sign the organ donation register was what connected us. I think of that often and it makes me smile.

“… heart transplantation is the closest thing to a miracle.”

Last week, Paul and I premiered a video we made about our transplant journey with the Public Health, Private Illness conference. If you would like to watch it, you can do so using the link at the bottom of the page. The video is personal and it was difficult for both of us to relive our experience in this way. We did it because we feel strongly that we should play our part in raising awareness of heart transplantation and organ donation.

For me, heart transplantation is the closest thing to a miracle.

Everybody who receives a heart transplant would die without one.

Paul and I recorded the video below to share a wee snippet of our story and to help raise awareness of organ donation. It’s about 15 minutes long.

If you aren’t already, please consider signing up to be an organ donor.

In Scotland: https://www.organdonation.nhs.uk/uk-laws/organ-donation-law-in-scotland/

For the rest of the UK: https://www.organdonation.nhs.uk

Lucky numbers

Recently I discovered my transplant number. I didn’t know there was such a thing until another friend told me his. Mine is 333, which seems auspicious, though I’m not sure why (apart from the obvious). It means I was the 333rd heart transplant to be performed in Scotland since they began in 1991 in the Glasgow Royal Infirmary. I was the 53rd person to have the operation in the Golden Jubilee hospital, which is also the age I am this year.

All the threes

In general I don’t tend to attach significance to numbers and I often have trouble remembering dates. As for trying to set a date, for a wedding for example, or a book launch, I find it almost impossible. When Paul and I decided to get married we thought there was a very real possibility I would be dead within a few months. The results from the test they perform to make sure you’re suitable for a transplant weren’t looking good. The pressures in my lungs were too high. I didn’t know what that meant exactly but I did know that unless they could reduce them, I would not be eligible.

The test they perform to check the pressures in your lungs is called a right heart catheterisation. It involves threading a catheter through a vein in the right side of your neck. As far as I understand it, the test allows the doctors to observe blood flow through your heart – to see how well, or poorly, your heart is pumping. From my perspective, it involved injecting anaesthetic into my neck, before making a small incision into the vein, in order to insert the catheter. My doctor controlled the catheter via an x-ray image that I too could watch live, should I want to. Most of the time I didn’t.

Luckily those in my medical team were aware of my anxieties (which let’s face it seemed entirely reasonable, given the test involved sharp objects coming into contact with my neck) and would give me a wee bit of midazolam* to calm me down: the equivalent to a double gin and tonic. In combination with the soothing familiarity of the ‘sounds of the eighties’ escaping from radio station in the procedure room, this worked a treat. Most of the time I closed my eyes and allowed myself to drift away on memories of vodka-fuelled dancing in village halls in the Highlands. You know that much is true.

Gin and tonic

Over a 10 day period I was pumped full of drugs to try and reduce the pressures in my lungs. In order to be listed for transplant, my medical team had to be sure the high pressures could be reversed. Each time, just before the test, I would breathe as calmly and deeply as I could and will my heart to keep going, to pump a wee bit harder, please. I’m sure it tried its very best. But still the pressures remained high.

Each Friday there is a multi-disciplinary team (MDT) meeting to discuss those in need of a transplant. On Wednesday 4 December, I had another right heart cath (see how fast I slip into the lingo). My pressures were still too high. I was told my case would be discussed at the MDT. And then a nurse sat with me to tell me about other options, were I not to be listed for transplant. I was being prepared for the worst. When Paul arrived to see me later that morning, I asked him to marry me.

For 48 hours I wasn’t sure if I would be given a chance to live or not. My whole body was shaking from the drugs and fear. I wrote all my passwords on a scrap of paper in illegible handwriting ready for Paul, should he need to …

On the morning of Friday 6 December, the young cardiologist who had been the answer to most of my questions, arrived breathless at the foot of my bed. She told me they had decided to list me for an urgent heart transplant. It was 8.20am. The MDT meeting had started at 8am and was still going on. She had sneaked out of the meeting once the decision was made, so I didn’t need to wait a moment longer. It was one of the kindest things anyone has ever done for me. The man who would be my transplant surgeon later confirmed my listing.

I was added to the urgent transplant list on Monday 9 December. I received my new heart on Christmas Day. Just under a year later, on Saturday 8 November, I married Paul.

These are the dates I don’t forget. Nor will I forget the date my book is finally launched. All I need to do now is decide what date that will be. I’m thinking October. And when I decide, you’ll be among the first to know.

And if anyone ever wants to know my number, it’s 333. 

I might even get it printed on a t-shirt …

*Interesting fact about midazolam, not only does it cause drowsiness and reduce anxiety, it also makes you forget what happens. Even if I did feel pain during the procedure, I wouldn’t have remembered it. 

It also makes me giggle, causes my legs to become colt-like in their unsteadiness and my mouth to betray my intelligence – exactly the effects of a double gin and tonic.

Cheers!

For details of the Kickstarter campaign see: https://www.kickstarter.com/projects/myheartscontent/my-hearts-content