I have decided to include an extra commentary on this chapter as I feel its important to remind the reader that the decision I came to is based on personal experience and the surroundings I had at the time. There is no definitive answer to the question ‘which valve would you choose?’ as the choice will always be personal. My wish is not to influence someone else’s decision, only depict the struggles and questions I was facing at the time and how I came to a peaceful resolution.
No one was willing to give me their answer. What would they do? Which valve would they choose?
I guess they felt their opinion may influence my judgement and they couldn’t accept the responsibility of that. The entire medical world was pushing me towards the mechanical valve on the basis that an operation of that severity would only ever be given as a last resort, so the possibility of two should be avoided at all costs, which I did agree with.
I had three options as I saw it; I could have the mechanical valve, the tissue valve or no valve at all and simply see how long I survived. Even if I had the operation there was no guarantee of surviving. So in fact the part I had to make peace with was that in any scenario I would either wake up or I wouldn’t, and that I could be happy with.
It was something I meditated on daily. I allowed this sense of calm to come over me and carried it on through my activities as best I could. I couldn’t get my head around the idea of Warfarin and the restrictions I felt it would put on life. The mechanical valve seemed like a great idea but nothing else surrounding it did. It was as if I was fixing one problem and creating another one.
I thought ahead in life as best I could, hoping to be able to go snowboarding again as I missed the mountains. I wanted to ride my bike and live life not feeling burdened by monthly hospital appointments with daily medication and injections. Having just turned thirty I still felt the need to embrace a life of living.
The people I communicated with online who had a mechanical valve said it was fine and something they quickly got used to, life changes all the time and you adapt. I felt as though the mechanical valve was like resigning yourself to a certain fate; a definite circumstance that could be avoided.
Medical advances are being made all the time in huge leaps. In ten or twenty years who knew where we would be and what the possibilities could have become? Perhaps by then they would be able to grow my own valve, I thought.
My sister has type one diabetes so she constantly injects herself regularly to balance the levels of insulin in her body. A daily log is kept of her levels and the dose is altered accordingly. Every now and then she goes to hospital or the doctor for check-ups. We lived together for four and a half years so I was very familiar with the disease and how she had to change things because of it. It wasn’t something she was born with; she was diagnosed in her early twenties. Living with a type one diabetic brought the decision I had to make home to me, about what it meant to be continuously beholden to medication, and I imagined how it might be for me in a similar situation.
I had a choice about the future I wanted to have, and she never did. I could have the mechanical valve and be like that or not.
I kept thinking that it wasn’t just about the heart. There was all this emphasis on the heart and the valve but the body is a whole organism, all connected, not one part is separate from the other. It’s about a healthy whole, not just the heart.
It was about two weeks before the operation date and I came to the conclusion I would rather have quality of life over quantity, so I decided to have the tissue valve.