Thriving on the heart transplant pathway
Empower - Share - Demystify
17th October 2024
4 Words to change your life
Welcome to my blog. I wonder if you have ever reflected on how exactly you got to where you are today? What have been the life events and choices that you have made to reach this point? It could be that you grew up in a certain place, attended a particular school, got in with a certain group of friends and made decisions about the kind of work you might like to do. You may recall certain words associated with these choices and events, such as "you passed your exam" "you got the job" or even "will you marry me!"
For some of us, these choices and life events may be inextricably linked with our health. As such, those few words may be etched in our minds for a long time.
Picture the scene: My Cardiac Consultant and I in their office at St Bartholomew's (aka "Barts") hospital, London, a few years ago. (Heavily paraphrased.)
Consultant: "So the results are showing that the heart function is deteriorating"
Me: "ah, yes, ok" (thinking: yes I kind of knew that, I know my exercise tolerance is getting worse.
Consultant: "So all things considered, it looks like you need a transplant"
Me: No response forthcoming. (Thinking, oh no, have I reached that point? Unable to speak. This isn't good, I don't think I'm THAT BAD, yet.)
Consultant: "I'm referring you to my colleague, who is a heart failure specialist."
Me: "OK" (I don't recall saying anything else in that appointment, and left.)
To cut a long story short, I was later referred to a Consultant based at The Freeman Hospital, Newcastle for heart transplant assessment. Once again, those 4 words came into play when we were talking about the results of the most recent tests, including cardiac catheter. The phrase that impacted me the most was "the numbers don't lie." I understood immediately, that, however I felt in myself, however much I was reluctant to enter the transplant pathway, the clinical data was evidence that such an intervention was needed, and sooner rather than later.
When I reflect on that time now, I can recognise that I probably went into a kind of shock, on hearing that a transplant was the best viable option. Even though the idea had been planted in my mind several years earlier, it was still another thing to be confronted with the prospect in reality. The thought of transplant represented risk to me and it was scary. This sense of shock was quickly followed by self denial. This couldn't be happening to me, I'm not sick enough. I'm working, a dad to 3 children and my day to day life is ok.
What has helped me to process these thoughts and feelings (and with my Counsellor's hat on) is to recall the Change curve, as originally outlined by US Psychologist Elizabeth Kubler-Ross. In her research, she noticed how people reacted to events in their lives, particularly in response to dealing with loss and grief.
As per the graph below, Kubler-Ross recognised that people can go through various stages of processing change in their lives, starting with that shock and denial, through to anger, depression before acceptance and change can emerge. For me, I think that I was already in hospital, awaiting the procedure, before I had come to a point of acceptance of where I was at. I certainly recognised times of anger and frustration, especially in dealing with the amount of waiting for the procedure, never knowing when I might get called for surgery. I distinctly recall a time when 2 trainee cardiologists arrived at my bed, asking if they could examine me, as part of their training. I declined, which is unusual for me, but I had just had enough at that time and wasn't in the right frame of mind to be examined yet again.
I do think that this framework (it's only a theory) can help us to visualise where we might be in this process and that these changes have been observed in many others, we aren't alone in this. A phrase I like to use is "this too shall pass" which originates in ancient Persia, I believe. It means that whatever life looks like for us right now, it won't be like this forever. Change is possible, especially if we are open to it. Transplant, I think, is right up there in terms of a life change that we can go through, and with it comes all the possibilities of a longer, better quality of life. I will always have gratitude that such an intervention, as scary as it seems, is possible in this day and age.
I thought that I would include some music this time. A song that encapsulates this process for me is "The long and winding road." A bit of an oldie now, but it brings to mind all the twists and turns that are inevitable in the transplant journey. (More on that in future posts.) In my case the long and winding road took me 250 miles up the M1 to Newcastle NE7 7DN. The only reason I know that postcode so well, is due to the number of Deliveroos we had in there...
Please click on the link to open up the song in another tab:
Thanks for reading and for the feedback received so far. Please get in touch via richard@heartbeatcounselling.com
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Until next time - Peace!
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