I have struggled much of my life with the feeling of enough. Being a sick kid I was always worried that my contribution to my family wasn’t enough to outweigh the cost of time, money, and mental bandwidth my illness required. Once upon a time, and more than once my father remarked off the cuff that I was “more trouble than I was worth” to him the comment was a joke, it was innocent, it was a throwaway remark meant to tease me about my clumsiness, and my tendency to end up in the ER. To me it was an admission, he confirmed what I was sure I knew, I was not enough. 

Therapy has helped. I have learned that my worth is not derived from others. The concept of enough however seems like it is ever-present. Lurking. Cruel. Being enough. Not having enough. Having ENOUGH. 

This transplant journey has brought up its own enough. Is how I am living enough? Have I truly had enough? Am I sick enough? Am I worthy enough? 

One of the hardest things about being an adult with a congenital heart defect that is being considered for a heart transplant is that a lot of the usual ways of determining candidacy don’t align with the issues that we have as our health declines. To look at me, most people wouldn’t believe I am in end-stage heart failure, but here I am, crushing it. The thing with people with CHD is the decline in our health is often so slow, over a lifetime, that in ways we almost don’t notice our quality of life slowly slipping away. Tests meant for acquired heart disease don’t always accurately measure how sick we are, or how sick our hearts are, because the very structure of our hearts isn’t typical, and neither are the ways in which it can fail us. For a long time, doctors told me that a big indicator of whether or not it was time for me to have a transplant would be my ejection fraction (the amount of blood your heart can squeeze out each time it constricts), when last “measured” my EF was 25. In a typical heart, an ejection fraction in this neighborhood would put you on track for a transplant. For me? I got a defibrillator and resynchronization therapy. That has worked fairly well for me for the last 10ish years, during which time the medical community has decided that ejection fraction is actually not a useful or accurate measure for people with a systemic right ventricle (the one that does the bulk of the pumping) like me. More recently I failed with flying colors a different test that would indicate heart failure and transplant, but my heart cath looked “good” for someone with my defect. The question now is, am I sick enough for a transplant? A question and answer that is way out of my hands. 

The caveat of “for someone with TGA…” has been thrown around a lot in my life, it is often used to curb enthusiasm and lower expectations. It often feels like  “Don’t ask for more than you have because, for someone with TGA, you should be thankful just to be alive. That should be enough.” Do not mistake me, I am incredibly thankful for the series of events, and miracles even (and there have been many) that have led to me being alive at 40 but, I am no longer sure that not being dead is enough. I miss living. I miss the freedom of a more healthy body. There are things that I don’t even know that I miss because they are things that I have never known. It isn’t that I am not happy, we all know that I am a generally happy person. It isn’t that I couldn’t possibly continue to coast. It is that it isn’t enough anymore. As Albert Einstein (or maybe John Shedd) said “A ship is always safe at the shore, but that is not what it is built for.” it is true that I might be safe, but this isn’t what I am meant for. 

On the other hand, there is the magnitude, the cost of the gift I am asking for, the desire I am putting into the universe, and the price of taking my ship out of the harbor again. Could anyone easily say they are worthy of such a gift? I have been uniquely close to both sides of organ donation. So many of my friends have received the gift of life and in my second-hand experience receiving an organ is a solemn celebration. I have also known the pain that comes with losing someone I love dearly tragically, and the heartbreak of letting them go. It is true that knowing when I lost my friend others were given a chance at life through the gift of organ donation was comforting and the choice made by those that loved him was absolutely the one he would have made himself. Knowing that isn’t enough though, it isn’t the same as being able to laugh with my best friend, hug him tight, and listen to all the ways what I am writing right now is valid but in the end, doesn’t matter because I deserve to be happy and healthy both at the same time. Dammit. This is not where I thought this entry would end, but I feel like I reached a conclusion, with the help of my friend. I deserve to be happy and healthy at the same time, anything less than that isn’t enough.