Thriving on the heart transplant pathway
Empower - Share - Demystify
26th November 2024
Taking the long view:
Welcome to the November edition of my blog, I hope you are well. I recently met with my friend Jason, who received his new heart 14 years ago. We talked about the longer term perspective of the transplant pathway.
I first met Jason via the Somerville Heart Foundation, an excellent organisation that brings together and supports adult patients born with a heart condition. Please check them out on www.sfhearts.org.uk
Jason had been born with a complexed heart condition and ultimately received a new heart in 2010, at the Freeman Hospital, Newcastle.
Jason and I pictured here at the restaurant. I'm the one on the right, with the "moon face" and bushy eyebrows which are almost universal side effects after this procedure.
We met up recently over a very pleasant lunch in the City of London (Hawksmoor – highly recommend.) Amongst other things, we talked about the longer term perspective of getting a new heart. Some themes emerged, as follows [my comments are in brackets.]
· In the early days, after your operation, take it one day at a time, you don’t necessarily have to set rigid goals. Be kind to yourself. In receiving a new heart, you have been given a second chance at life. It’s worth it in the end, regardless of the ups and downs along the way, especially in the early days.
· Be mindful of your energy levels. Be wary of drama and conflict, anything that can sap your strength. Review what it is that matters most to you, focus in on those things. Do what makes you happy and practice self-care, you deserve it. [In a future blog, I’ll look at Spoon theory, a way to be mindful of how much energy we have left in the tank, whilst dealing with our health conditions.]
· Keep active. This can be easier said than done, as some of us have had negative historical experiences of exercise, or even trying to do exercise. Nevertheless, we need to try to build up our strength and stamina for our overall wellbeing. The new heart wants to do what it was made for!
· Don’t let your health condition define you. Whilst your health is an important factor, it need not be your identity as a person, you are so much more. [This theme is explored by Life coach and heart patient Beth Greenaway in her excellent book: Upbeat - Growing resilience and positivity in the face of medical adversity. In her book she says how “I realised that I had to take ownership of what I achieved in my life and change my internal dialogue, or the voice in my head, so that I was no longer viewing myself as a victim. My mistake had been to blame (sometimes unconsciously) my heart condition for many of the difficulties in my life, and to use it as an excuse for not being and doing more. By giving it so much power, I had surrendered my ability to move on.” Our health conditions may be one element of our self-identity but we have so much more to our personalities than just this one thing.]
· It’s helpful to talk to others about their experience and journeys. [Find your tribe. This is where the internet and social media has proven to be very useful, since we often don’t know anyone in our immediate circle who can relate to our experience. Patients tell me that sometimes, even their own family members aren't able to empathise for what it's really like to live with a chronic health condition. As well as the Somerville Heart Foundation mentioned earlier, which has a great peer to peer support network on Facebook, there are transplant specific Facebook groups, such as Heart Transplant Families UK, Share your Wishes and the Freeman Heart and Lung Transplant Association (FHLTA.) I’m sure there are many more, please let me know if you would like them to be included in future blogs.]
· Don’t feel like you have to do something amazing to justify receiving your new heart. Every day is amazing. Live a normal life, focus on family and friends.
· It’s ok to feel rubbish or depressed about your situation, it’s a huge process to go through. It’s how you manage that. Back in 2010 there was no mental health support for transplant patients. Thankfully the importance of mental wellbeing is now recognised and transplant centres have an expectation to provide services.
· Be mindful of the impact of this process on your relationships around you. Your friends and family will be worried also, they may possibly worry too much. When you receive a new heart, ultimately you may no longer be the “sick person” in the family or relationship. [This can impact on the nature of the relationship and power dynamic between yourself and others. Someone who was your official, or unofficial carer may no longer have that same role. You and your friends and family may need to let go of what was before and find a new way forward, a new normal.]
I found it really illuminating talking to Jason, someone who had been through the whole process and had found a way through it, with the support of his family, that worked for him. In particular, his comments around not feeling the need to do anything "amazing" to "justify" receiving this gift. For me, I think I now recognise more than ever that just being around, "to smell the flowers" and to spend quality time with friends and family is of the paramount importance. I'm sure that others may see it differently, vive la difference!
Jason picked the music for this edition, Talk Talk – Life is what you make it. Jason told me that this tune was on loop in his brain whilst in ICU and has stayed with him ever since. “The music even seemed to be in tune with the constant beeping of the medical monitors that were looking after me” he says. I guess the title of the song says it all. My thanks go to Jason for his honest and open sharing of his experience.
I thought I would end this time by explaining about the title of my blog - You only live twice. Yes, I know it's a Bond movie, that's not the inspiration, however if I was a secret agent, my codename would have to be 0-0-Oh not another blood test :-)
The blog is actually named after a quote attributed to the Chinese Philosopher Confucius, who said that "We all have two lives, the second begins when we realise that we only have one." For me, it alludes to the sense that we do indeed only have one life, but we can take it for granted and assume that we will be here forever. When we have a life event such as a major medical intervention, it can give us cause to step back and reflect on what is important to us and how we want to be around other people.
Thank you for all the kind feedback following the earlier posts, I do appreciate it. Next month it will be my one year "heartiversary" so I'll be writing about that.
Until then.. Peace !!
This one:
Not this one:
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