Friday, August 8, 2014

6 Months Post-Transplant: The Other Side of Organ Donation

I've been wanting to do a blog post about this for a couple weeks now and I suppose that today, six months post-transplant, is as good of a time as any. Two weeks ago, Jon and I received a letter from Max's heart donor's family via PCH. We knew it was always a possibility to hear from them and we most likely wouldn't hear from them for six months, if ever. But in our daily lives, it's easy to navel gaze and forget to think about anyone outside of the three of us, especially when we're on house arrest and really only spend time with each other.

Receiving that letter was a much more emotional experience than we expected it to be. Out of respect for the donor family and for our own family's privacy, we have elected not to share the contents of the letter or any information about the donor. We will say, however, that they seem like nice, loving people. For me, this sort of feels like a double-edged sword: on the one hand, it makes me feel good to know that Max's heart came from nice people but on the other hand, it feels that much more tragic that a nice family lost their baby so ours could live. But, that's the two-sided coin of heart donation: the death of one person gives life to another.

This family has given us something that we can never even hope to repay. As writers, Jon and I love words but I find that even as I write this, all the words I have at my disposal are inadequate to express all the emotions I felt and still feel about Max's heart transplant. I'm devastated that they had to experience the death of their child. I'm grateful that this family elected to donate their child's heart in the wake of their tragedy. I'm joyful that Max received a heart and that, six months later, we spent our day playing, laughing, and taking pictures with him. All of these emotions are intertwined and inextricable from one another.

There's a certain level of survivor's guilt that comes from receiving an organ donation for our family, at least for me there is. It feels like one of those unanswerable questions: why did this family have to experience such a painful loss while our family got to keep Max?

On the day of Max's transplant, in the hours leading up to his surgery his kidneys started to fail and if they had, his other organs wouldn't have been far behind. The doctors might have been able to buy him some time but we were facing the very real possibility of losing our son that day. Even the smallest stimulation caused his numbers to drop drastically which meant that I wasn't allowed to even stand at my son's bedside because my presence was too much for him. Instead, I sat across the room and stared at the monitors, watching the numbers dip into the red warning zone, take one step up, and then sink down two more.

I was terrified that I was just watching my son die and I'd never even gotten to hold him. I hadn't even heard his voice yet.

Max's donor heart came through in the nick of time and, thanks to the strength of that heart, the incredible talent of his surgeon and the transplant team, and Max's fighting spirit, he made it through. More than just made it through, Max has thrived. Yes, he's had low blood counts and we just dealt with his first infection, but Max has exceeded the doctors' expectations.

We are so thankful for Max's donor and that child's family. They didn't just save Max's life, they saved Jon's and mine, too. We are immeasurably grateful to them every day for the gift they've given us.



If you're friends with me on Facebook, you've probably noticed that I share a lot of statuses from Organdonor.gov. I encourage everyone, if you feel so inclined, to sign up to be an organ donor. It doesn't matter your age, ethnicity, or medical history--anyone can register as an organ donor and a donor can save up to eight lives. When we found out Max would need a heart transplant, Jon and I both registered as donors and we encourage others to do the same in honor of Max's donor.

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