We all need hope. Today marks four weeks since my percutaneous (catheter based) pulmonary valve replacement and I have had many requests for an update on how I am doing.
The easy answer is that I am feeling good. After a few rough days initially, it didn’t take long for the discomfort at the incision site to almost go away and for my body to seemingly adjust to what must be an improved circulatory system.
Its quite miraculous when I think about it. My previous three open heart surgeries have led to extended recovery times over several months and required a huge amount of perseverance for me to rebuild my fitness. This time, my instructions were simply to be ‘very careful’ with my activity level over the first few weeks. Any of you who know me well will likely anticipate the amount of liberty I took with that statement, given I cycled 450 miles on Zwift and walked 40 over that period with no obvious issues!
Rather than adding to my multiple zippers, my only visible scar is two small punctures in my groin to give venous and arterial access – the rest of the internal magic was down to technological advances and procedural skill. I am now sporting several platinum and iridium stents in my pulmonary artery, with a ‘Medtronic Melody’ bovine jugular valve implanted inside.
I will be forever grateful to my long-time congenital consultant for pushing forwards with me to make this procedure possible before my cardiac health was irreparably damaged. He well understands the importance of fitness in my lifestyle and identity, hence has always worked with me to maximise any possibility.
My true capabilities will never be that of a ‘normal’ person without my congenital heart defects and surgical history, but that does not mean I am not able to improve. I have never been a couch dweller and am always looking for the areas where I can enhance my physical and mental wellbeing to get more from my body.
Prior to this procedure, the last 12 months had been a physical and mental struggle as I watched my fitness levels decline and my symptoms become increasingly restrictive. This new valve feels like I have yet another new chance to test out my physical limitations and see just how good I can be.
But its not all good news!
I foolishly expected this procedure to give me a miraculous improvement in my symptoms and that I would somehow wake up back to where I was four years ago, before the endocarditis, emergency surgery and all that entailed. Yet that is not the case so far, although I am sure there is still improvement to come as my heart muscle remodels in response to the differing demand.
I am still breathless when exerting myself – certainly less so than before – but worst of all, my increasingly wonky heart rhythm seems to have been irritated and is driving me even crazier than usual. I am unendingly optimistic and hopeful, so it strikes me that I need to be more patient with myself before I fully judge the outcome.
I acknowledge that there is a balance between determination and acceptance which I for one find hard to get right. I am looking for that sweet spot between maintaining hope of an improvement, yet at the same time being at peace and content if that never occurs. It is the process which matters and not the destination.
Setting the bar too high will likely lead to frustration and delusion but, by the same token, setting it too low means failing to live up to my potential. Mediocrity is not part of my character and I am always going to push, even if that occasionally means being disappointed. I am ok with that process being uncomfortable because I am not looking for the easy life. That struggle and grind is proof that things are important to me and that I am alive.
Hope is not enough
I have been thinking a lot about hope and what that really means. Contrary to popular belief, it is not a passive process. We can’t just hope for something and then just sit around waiting for it to happen – or if we do, I can pretty much guarantee we will be disappointed!
Having hope alone is not a guarantee of a specific outcome. It’s just the starting block and moves us from the side-lines and onto the track. Even then, we still need to make those first steps to get moving. My consultant has done his best to give me a stable foundation from which to build, and it is now up to me to construct my best self on top.
For me, that means regular exercise, quality nutrition, 8+ hours of sleep per night, managing stress, seeking personal connection, meditation, and so much more. It’s the tiny, daily investments made with consistency which will get me where I want to be and allow me to maximise my potential.
I always want to believe that things can and will get better. I acknowledge there will still be struggles and further challenges to overcome as that is just part of life, but there is equal potential for me to open a new world of possibility.
I never want to give up on hope. It is something which gives me the ability to remain optimistic, to power through when times are tough and setbacks occur, to push myself beyond the normal, and to try things which medical science and public expectation assume I am unlikely to achieve. I rather like proving people wrong.
Living with uncertainty
Of course, I don’t know what the future holds or where my physical limitations now lie. I am determined to strive against that background of uncertainty so I can find out. Where I am today does not equal where I can be tomorrow, and I am excited by the possibility!
I’m not sure that I will attain my physical goals, whether I will race better on Zwift, get back to competing in triathlons, or if I will reach a previously unattainable level of fitness. The only thing I have control over is that element of hope coupled with my own determination, energy, and passion.
So yes, four weeks since my valve replacement I am not yet where I want to be. What I am is better than I would have been without this remarkable procedure. I know there are a few less barriers in front of me when it comes to reaching my physical goals.
Most of all, I am ready to employ more of my normal gritty determination so I know that I did my best on the comeback trail. Of course, for those of you who have been following my journey, I will be letting you know how it goes.
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