Thriving on the heart transplant pathway
Empower - Share - Demystify
17th January 2025
Life on the Rollercoaster
Hi everyone, a belated Happy new year to you all. I hope you had a good Christmas break. I managed to get one of the bugs that are going around, which took me completely out of spoons (energy) before Christmas, hence no blog for December.
We often refer to dealing with a long term health issue as being on a rollercoaster. A series of highs and lows, with us clinging on, with occasional screaming. For this blog, I thought I would reflect on some of the ups and downs of being on the transplant pathway, especially from the perspective of waiting for, and recovering from, the process. I've written paragraphs based on: Most fun time; Silliest moment; Acts of kindness; Most anxious time and finally, The time when the highest high collided with the lowest low.
Trigger warning: The final paragraph refers to death and dying.
The best time:
Whilst in hospital, one of our fellow inmates had a big birthday. His lovely sister took the trouble to plan a party for him, including booking an appearance by The King, Elvis Presley. For one night only, The King was in the house. He was brilliant, although I'm not sure what he made of us, since we were a captive audience, indeed, we were caught in a trap. It was so much fun and we all got really into it and it allowed us to forget about the day to day issues for a few hours.

Silliest moment:
A few of us decided to watch a movie and we picked this one: The Brothers Grimsby. If you're ever thinking of watching it, don't ! It's so stoopid! If you're a big Sacha Baron Cohen fan, you'll love it.

It was non stop silly jokes, plenty of inuendo and just crazy. Anyway, I don't know what happened but I ended up howling with laughter and literally crying watching it. I guess it was such an antidote to some of the heaviness that I had been feeling, connected with the waiting for the procedure. The hilarious thing was, that I was howling so loudly that three nurses came bursting through the day room doors, worried that someone was in difficulties. True story. My how we laughed.
Acts of Kindness:
Actually there were lots of times when acts of kindness just really helped to boost the mood and remind me that people were thinking about all of us and that we weren't alone in this. I received care packages from friends and also from the charities that support the hospital patients. These were little things I guess, but in that situation they meant a lot.
One of the most touching times was on my birthday, when my friends on the ward, as well as staff took the time to write a birthday card, it was quite the choker.

On occasion some of us were able to get out into the wider world. About 2 weeks before my operation, we had a family Christmas lunch at a favourite nearby Italian restaurant, Francesca's.

Of course, it was a lovely time, just to be able to do something normal for a change, especially at that time of year. Who you can't see in the photo is the Specialist Nurse that accompanied us, as part of the deal of getting out. Without her, the lunch wouldn't have happened. She insisted on sitting separately, to enable us to just get on with it, which I really valued. Occasionally she would pop her head round the corner to check everything was ok. This kind of thing was so typical of the compassionate support that we received from our carers in the hospital.
Most anxious time:
About six months into my stay, things started to go a bit Pete Tong for a while. For some reason my Potassium levels began to fall, which could have had serious consequences. In addition, my wedding anniversary had just passed and a fellow patient was having a rough time in ICU, following their operation. The combination of these events just really hit me. At times like that, I would often take myself off to the hospital chapel. I don't consider myself to be particularly religious, but it was the quietest place in the hospital, with a very calming atmosphere. I would just sit there, reflecting on what was going on, talking to myself and trying to pick myself up to "go again."
In the event, the darndest thing happened, in that, for reasons I'll never understand, my Potassium levels began to pick up again and my health stabilised again. There had been discussion about a "Plan B" in terms of treatment for the weak heart, but as it turned out, I never looked back and I was able to get stronger, It would still be another 4 months until I was able to have the procedure.
As I was leaving the Chapel, I asked myself "what do I actually need, in order for this to be ok?" Was anything missing that I could sort out somehow?
As a counsellor, when I think of these issues, I can turn to the Hierarchy of needs, as outlined by the psychologist Abraham Maslow, you may have heard of it.

So Maslow created a model, whereby he described which of our needs have to be met, in order to achieve self-actualisation, which is the point at which we are able to live our best lives. If we start at the bottom, it was clear for me that, in hospital, my basic needs were being met. Belonging and love needs were met, especially in the regular visits from family. I guess, for me, what was lacking was in the next layer, the needs for esteem, especially the feeling of accomplishment. I was in hospital for one reason, and the "not knowing" of when that procedure might happen was a real headbanger and a cause of anxiety.
Highest high and lowest low:
So I eventually had my operation in December 2023, 10 months, almost to the day, after first entering hospital. The operation went very well I'm told and the recovery was relatively swift and drama free. The euphoria of waking up after the operation was something else. It was all smiles and laughter. I remember that I kept saying that I couldn't believe it. I had made friendly wagers with two of my consultants that I wouldn't be "done" before Christmas. Of course, they won the bet (what insider information did they have?) however they wouldn't take the money!
However, the euphoria was short lived, as we lost two of our heart friends at around the same time. Two incredible women, from loving families, who had left us far too soon, arguably as a consequence of the heart conditions that they had been born with. Not only had they both faced their health conditions with great stoicism and positivity, but they were also well known for their support and advocacy for other heart patients. It was such a sad time, there were tears. The juxtaposition of getting through the operation, together with the grief and loss at the same time, was difficult to process.
For this months tune, let's go back to The King, this is for all the current inmates wherever you may be. Don't forget, you're not alone.
Next month is Heart Month. As a new initiative, I'll be partnering with the Somerville Heart Foundation in hosting a monthly zoom meeting, focusing on peer to peer support for anyone on the transplant pathway, both pre and post transplant. If you're interested, please check out the website Home - Somerville Heart Foundation or their Social media. The first meeting is timetabled for Tuesday 4th February at 2pm.
Until next time, take it easy - Peace!
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