On October 20th, it was my ninth heart transplant anniversary. Exciting, right? Except that this year, the day was more or less just like any other day of the year. That's not meant to sound accusatory. It was still special, but just a little less so because that's how this year has been. Does that make sense? I'm not sure it does, but what I mean is that I'm grateful for all of the love and for any thoughtful gifts I received this year, but the day didn't feel as special as it normally does.
This year has been strange and difficult in a lot of ways. For me, the hardship has come as the curtains of this year begin to close. I (almost) always have some kind of procedure and routine tests done every year in December. I received some crushing news this year in the procedure room surrounded by very kind and reassuring health care professionals. I've never been so in awe of physicians and how seamlessly they deliver results to patients until recently, until the patient was me and I couldn't stop crying. I hate the number 18 now. And the number 9 too. Maybe that's a bit dramatic, but it's where my mind was 12 days ago.
I had my annual clinic appointment recently. All of the imaging was apparently fine, except for what they found on my left heart cath. A 75% narrowing of the left anterior descending artery (the widow maker). When you hear that for the first time and subsequently every time after, it doesn't feel good. Simply put, I freaked out. I thought it was my fault and probably always will. I don't even know if it is my fault or not, but I guess placing blame here doesn't matter. I felt my world crashing down. I felt guilty for everything.
More officially, what I have is apparently referred to as cardiac allograft vasculopathy (CAV), which from what I understand is the transplant version of coronary artery disease (CAD). The way it's appeared though doesn't seem to meet the criteria of CAV to me, seems more like a CAD picture, but I'm almost not an expert so what do I know? Overall, not great at all, especially at 25. Bleak and depressing to be honest with you. I was ready to cry my eyes out at that appointment, but that didn't happen because my cardiologist didn't seem worried. That doesn't mean that he's not concerned at all. I thought it was a death sentence (because in a way, it kind of still is), but he just explained step wise what we were going to do to keep it from progressing. The silver lining in all of this is that I'm not symptomatic (but also not necessarily expected to be) and that it was found early (something two of my brothers who are physicians reminded me of). It's manageable.
But still I wonder if it's something that I did or didn't do that caused this. My brother who is a cardiologist says that I shouldn't be so hard on myself, that there are a lot of factors that are out of my control. I vaguely remember hearing my cardiologist say something about how we don't know the genetics of the donor heart, but I'm not sure I understand what that has to do with it. But then I also remember that this heart, although it has been mine for over nine years now, it belonged to someone else first.
So, that's my story. I'll be honest - I haven't made drastic changes in my life really since hearing the news other than that I'm really determined to do my best to stay away from fast food and most processed junk (with the exception of some dairy, honey, crackers, and bread right now) and working up my nerve to get back into establishing a daily exercise routine. It's nice to be living at home because meals are freshly cooked and I know it's made with love and care without all of the excess salt, fat, oil, and sugar. No more foodie meetups for the foreseeable future, but do meet me for a walk somewhere, anywhere. It feels good to feel the ground beneath my feet.
I thought it would feel insulting or embarrassing to receive that nine year celebratory certificate at my appointment, but it didn't. Nine years is a long time. I just wish it didn't feel like an ending.
I am will be okay.
I am still here.
And will continue to be here for many more years to come, in'sha'Allah (God willing).
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A transplant is not a cure, but it makes a world of difference for the recipient. Visit donatelife.net to register to be an organ, eye, and tissue donor.
While you're at it, visit bethematch.org and join the registry. My medical history disqualifies me from ever being a donor, but maybe yours doesn't.
Save lives, be a donor.
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For the record, I blame myself
It went on and on, I let me lose
All the best, I made it through
It went on and on and on without you
One and on and on and on
["Birdcage" by Novo Amor]
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The title of this post is taken from a song called "Silvery" by Novo Amor.
