Sunday, October 20, 2019

When there is an organ donor, life springs from death

Today marks 8 years since I was successfully transplanted with a healthy heart at Johns Hopkins Hospital. It’s astounding how much time has passed and how quickly time ends up passing. I normally begin writing this blog post the day before, but for some reason I fell asleep early last night and woke up before 2am today so here I am writing some of it now... and here I am at almost 9 in the morning finishing it up. 

I always like to take time to reflect on what has happened to me since that day, whether good or bad. There’s been a lot of both over the past 8 years. Let’s try starting with the good since that’s what I struggle the most with. This summer I went to the UK and met some of my second cousins. It was a refreshing experience. I played mini golf for the first time while I was there and went to see the new Aladdin movie with Aminah. I got to see most of the places where my father used to live while he was in school and doing his post-doc research. When we got back to America, a few of my cousins and I went to this really cute tea shop in Brooklyn. I went to Houston, Texas, for a conference and survived the heat. Claire and I enjoyed many foodie outings and went to the farmer’s market in Leesburg a few times. Shameless plug: we have a shared Instagram now called clawzia_prn and everyone should totally follow us. I survived my hospital rotation and actually really enjoyed it. I’m in my third year of pharmacy school, taking on absolutely more than I probably should, but am somehow still standing upright. I've had many fun evenings with friends, watching movies, talking, and playing games. 

I’m always hyper aware that I probably sound like the most ungrateful person in the world when it comes to talking about my transplant because I think people perceive that I focus on all of the negative things that have happened. But I am grateful. I am grateful. Another year has passed. I’ve met new people, strengthened old friendships. I’m surviving pharmacy school. I’ve been to places I had only ever dreamt of going to. I’ve been on some nice walks. I’ve had many cups of chai. I’ve been on lots of foodie adventures. I’ve taken steps towards taking care of myself mentally and emotionally, something that needed to be done several years ago, but better late than never.
The bad things that come as a result of transplant or after transplant for me still haven’t really changed from years past. My transplant is not a cure. I live with a handful of other conditions in addition to transplant. I never know what exactly is causing the things that are happening to me and no one else knows either. It could be the stress, it could be the meds, it could just be that I’m unlucky in some regards. But I have a much better quality of life now than I did before my transplant.

Sometimes I think about what it would be like if my classmates had to write up a SOAP note on me. It almost wants to make me laugh because of how ridiculously complicated it would be for them, but I’d be interested in knowing what interventions they would want to make on my behalf. I always used to think that I was so complex of a patient that I could qualify being treated by House, but then I realized there’s nothing that he would find intriguing about me. And House only takes cases that are interesting, but I digress.

Sometimes it feels strange to still be here because I never once pictured being here in this moment, in this space, in this time. I never really pictured living long enough to make it through high school if I’m being honest. I look to the future a lot, I try to imagine it, but I don’t usually find myself there. I think it’s because I don’t expect to be there and that’s a reality for me. It doesn’t mean that I don’t hope to be there, but it’s more like me recognizing how precious the time I have is.

I contacted someone recently to find out if my donor family ever received my letter that I wrote when I was in college. They did. But I guess they didn’t know what to say or maybe they didn’t want to say anything. I don’t blame them though. Finding out that they got my letter and not hearing from them has been one of the hardest things to deal with and I haven’t really dealt with it. I’m sad about it, but there’s not much else I can do besides write again and see what happens. Maybe the time just wasn’t right for them, maybe it will never be right. Grief is a non-linear process after all. I don’t expect it to be any easier on them than it is for me after 8 years because it’s still not any easier on me even now.

Every year, I find myself missing her even though I never knew her. When things go wrong, I think about her and try to remind myself that I’m here for a reason. It doesn’t really help, I usually just end up crying more. I hope I get to meet her family one day so that I can tell them thank you in person and give them the biggest hugs. And if by some chance I'm not able to meet them, I hope they know how much their decision 8 years ago means to me. 

I've run out of things to say now. I just hope this post doesn't come across as sounding insincere because I am grateful for this second shot at life. I've been able to do so much, see so much, experience so much. I guess one thing that surprises me as I look back is that the way they decide who gets an organ is based on a bunch of criteria, one of them being how sick you are. I remember what it felt like to be that sick, to have made it to the top of the transplant list, and it's not a place I want to find myself again because it's scary and life is full of no guarantees. I was just really fortunate. Anyway, that was just something that popped into my head just now. 

I owe the biggest thanks to God, my donor family, my own family, and every medical personnel involved in my care until now. Thank you to the friends who have stayed by my side and to those friends who joined later on but have felt like they've been there from the start. Thank you to everyone who continues to be on this journey known as life with me.

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"Without the organ donor, there is no story, no hope, no transplant. But when there is an organ donor, life springs from death, sorrow turns to hope and terrible loss becomes a gift."

Please visit donatelife.org to become an organ donor today.