Hi, I’m Emily and I’m a heart and kidney transplant recipient. The number one question I get asked is some variation of “were you sick before?”/“were you born with heart problems?”. Nope. In 2001, I was actually a perfectly healthy 15 year old… then I caught the flu. Unfortunately, unlike most people, I didn’t recover from it. It sent me into heart failure in a matter of days. The doctors later classified it as “viral myocarditis” - essentially, the virus attacked my heart muscle, and it became so inflamed it just couldn’t pump anymore. After a horrendous morning, complete with trips to urgent care and my local emergency room, I was placed on the first of various life support machines: ECMO - a heart/lung machine.
My condition couldn’t have been worse, but the doctors and nurses held out hope that my heart would somehow heal, if given enough time and help. After about 10 days in Syracuse, I was transferred to NYC and placed on a different life support machine: a Bi-VAD. At the time, this machine was able to be used more long-term than the ECMO (I’d already pushed the window with that a bit). The doctors did everything they could to give my heart a fighting chance, but after about 7 weeks, it was officially determined that my heart wasn’t going to recover. I would need a transplant. I was fortunate that due to my young age and such serious condition, it only took about a week to receive my new heart.
My journey didn’t end there.
In 2011, I went into acute antibody mediated rejection (fancy way of saying “some antibodies in the donor heart woke up and realized this thing shouldn’t be here). I was placed back on life support for about 9 days - ironically enough, the same type of ECMO machine I’d been on in 2001, just a much more updated/compact version. The chances of me developing this type of rejection were practically unheard of - after 11 years, this kind of thing is very rare - as was the fact that I was able to be removed from the life support without needing another transplant. This time, my heart did recover. 1 for 2, I guess. I don’t think you could have fit one more doctor in my hospital room that day, watching as my heart started working on it’s own again, as they carefully and cautiously turned down the the life support.
2015: Time for the kidneys to make their displeasure known. When I first received my heart transplant, I was told there was a chance I might need a kidney transplant down the line. All the medication transplant patients have to take to keep our new parts working and rejection-free are not always nice to the rest of the body. The kidneys have to filter all that stuff, and it’s a job. Granted, just from what I’ve personally seen, I’m willing to make a bet that most heart transplant patients don’t get to this point - especially with all the new, more body-friendly medication on the market today.
Unfortunately, I had a couple other factors working against me. I’d been in heart failure twice now (my heart actually stopped completely as they were getting ready to put me on the very first life support machine in 2001), and kidneys don’t like that. When the heart takes a hit, the kidneys take a hit. They’re much more closely related than people realize. My baseline kidney function got a little bit worse after both of these episodes (2001 and 2011), and all the medication was just the icing on the cake. As my nephrologist told me one day, “kidneys can take a lot of hits and keep going, but when they’re done, they’re done”.
In October 2015, my kidneys called it quits. I was admitted into the hospital, had a fistula and port placed (port for immediate dialysis - fistulas take a few weeks to “cook” and I didn’t have that kind of time). l’m extremely grateful to have only been on dialysis for about a month before receiving my new kidney. I was part of an 8 person “swap”, thanks to an altruistic donor who walked off the street and said “I want to donate a kidney, and I don’t care who it goes to”. I didn’t technically have a donor at that point, but with a swap, if you want to donate to someone you’re not a match for, they’ll find 2 other people who don’t match, and just “swap” donors. Chris started the “chain”, and I was the “caboose”, so to speak.
I’m eternally grateful for both of my donors - my heart donor and the decision of his or her family to say yes to organ donation (I never found out much information about them), and to my (living) kidney donor, and his selfless decision to donate. I like to think I’m living proof of the power of organ donation. My medical journey will never be over - I’ve got a laundry list of other illnesses/conditions I’ve dealt with, but I wouldn’t be here beating them all if it wasn’t for my donors! If you’ve been impacted by organ donation in any way, whether you’ve received a new “part” or had a loved one donate, I encourage you to join our team! ♡