Every so often we feature guest posts from people experiencing heart events. This week we’re featuring a post written by Glenn, who has been waiting on the heart transplant list for over a year. His unique perspective on this experience sheds light on the many highs and lows of waiting for an organ donation. Enjoy!
We knew it would take a long time, but it was hard to anticipate how long it would take. Even the transplant team couldn’t provide a good estimate. Anywhere from a few months to a about a year they had told me and my family. I was complex. Because of my single ventricle congenital heart defect, I not only need a new heart, but also a liver. I have antibodies built up that a donor organ can’t have. I have a blood type that less than 10% of the US population have. They said the surgery itself would be long for both organs, almost 24 hours. I’ve had four open heart surgeries and one brain surgery in my life, but the idea of this surgery, these organ transplants, is the most daunting. I’ve had over a year to think about this every day.
I was listed for transplant on October 17th, 2017 just a few days after I turned 31-years-old. I was listed for several reasons. I have protein losing enteropathy which causes me to lose protein through my gut. One of the key indicators of this is blood albumin level. At the time, mine was close to two. A normal Albumin is between four and five. One of the other main reasons I was listed was because I was getting atrial flutter, a type of arrythmia, more often and more severe to the point I had to be shocked out of it multiple times. It’s safe to say that a year ago, I was very sick.
Being listed for transplant made sense, but admittedly created a huge mix of emotions. I was angry, scared, sad, excited. I felt everything you could possibly imagine all at once, and at first, I thought that I was just going to have to put my life on hold for a year, maybe more. I thought with each passing day that this was lost time. I thought, for all intents and purposes, that I had to stop enjoying life.
When you’re feeling sick, it’s difficult to have a positive outlook on life, to be happy, to not think that the countdown to transplant could very well also be the countdown to the last day of your life. And, if you happen to make it through surgery, another clock starts. Data suggests that the average lifespan after heart transplant is 10 years. There are of course recipients that have lived long past that mark, but when you’re sick, you don’t see any of that. It’s like looking at a photograph negative. The lightest areas of the subject appear darkest and the darkest areas stand out the most.
It took me a while to realize that was not the case at all. It was the exact opposite. That this was the time to make as much of my life as I could. I realized I didn’t have to stay sedentary, I just had to stay smart about how to exert my energy. I realized I needed to be careful about what I ate and drank so that I could make the most of my life. Things that maybe I should have been doing all my life but didn’t for the sole fact that I wanted to fit in as much as possible and wanted people to treat me as though nothing were wrong. It was only recently that I realized my situation wasn’t a negative. I just needed to let the full picture develop.
Sometime in the past year, I finally came to terms that I had a heart condition, that I was chronically ill, and that a heart transplant was on the horizon. And I finally realized that coming to terms with all of this didn’t mean I was giving up, that I was weak, but rather, that I understood this all made me stronger as a person. It sounds simple, you can find thousands of people of social media with chronic illnesses who know that it’s a weakness of body, not of the spirit or mind. Thousands of people who came to this exact realization way before me. For me, it was hard. I don’t know exactly why it was hard for me, I’m not sure why I was so obsessed with being “normal,” with needing to go full speed 100% of the time. It could be because that’s what you’re supposed to do as a kid. Always be on, always be going full speed, never say no to anything. Either way, I’m glad I finally came to this realization.
This is not lost time. This past year has been time to learn more about myself than I ever have. Time to figure out how to be the happiest I’ve been in years. Are there times where I still have down days? Sure. Are there nights where I have trouble falling asleep because of anxiety? Yes. Are there days when I just want to be “normal?” Of course. But, those days are becoming less frequent.
The past year has been all about learning about myself. What makes me feel good, what makes me feel sick and adjusting accordingly. The result? The last time I had my blood taken my albumin was 4.8. Normal. I still get a couple of weird heartbeats here and there, but no sustaining atrial flutter and no cardioversions. Constantly wishing to be “normal” and constantly pitying myself is lost time. And, this is the time to get myself in a position both mentally and physically where I will have the best chance of making it through surgery and succeeding post-transplant.
This past year has been challenging, it has been exciting, it’s been scary, and it’s been enlightening.
Recently the United Network for Organ Sharing revised the listing statuses for heart transplant. Instead of statuses 1A, 1B, 2, 3, and so on, it is now Statuses 1, 2, 3, 4, and 5. The idea being that they wanted to classify status 1A’s better by breaking them up into their own statuses. I used to be a status 1B. I am now a status 4. While UNOS says that status 1B and status 4 are pretty much equivalent, there are other changes that have been made too. The initial donor service area has increased to 500 miles. Because I live in Philadelphia, the new radius extends to New York, Boston, and down to Washington, DC. This means that organs from my area can be allocated to those cities. The opposite is true too, but no one seems quite sure how this will all play out. It’s very likely these changes mean I will have to wait even longer. It’s as though all the cards were dealt and then suddenly reshuffled.
More time may have been added to my invisible countdown clock to transplant and surgery, but there’s still no promise of tomorrow or the next day. Even though I’m healthy now, tomorrow may be different. The difference between now and last year is that I have a blueprint for how to move forward, a blueprint for how to stay as healthy as possible, and a blueprint for making the most of this time. The most important thing is that I am doing well and feel good. I’m in no rush, that’s for sure. If it takes another year, then so be it. If it happens tomorrow, that is OK too.
To learn more and follow my journey visit my blog at secondheart.life or follow me on Instagram @secondheartlife.