My Two Favorite Dorks

My Two Favorite Dorks

Sunday, October 23, 2016

An Open Letter to My Donor Family

Dear Donor Family,

Two years ago today, I received two new lungs to replace my infected, scarred, failing cystic fibrosis lungs. Because of a stranger's generosity, I have had the joy of living for two more years, borrowed time, time that I might not otherwise have had.

When I was born, people with CF were expected to live to be 18 if they were lucky. My lungs took me all the way to 36 years – double that – and were good to me with all we did together.

The best part about having a lung transplant is that it has allowed me to not have to work so hard to stay healthy. I spent my whole life doing that. I have been lucky with transplant – I’ve had no major complications. These lungs seem to agree with me. Besides my daily pills, need for extra sleep, monthly blood draws and various doctor appointments, my life is fairly normal for the first time ever. I don’t work, but I’m able to volunteer a lot and that fulfills me and makes me happy. I exercise regularly, I try to eat well and be good to my body. Going on a trip is in no way the ordeal it used to be. I love each day that I am able to be productive and spend time with my husband and our five fur children.

Having to work at my health started early: As a kid, I was always being dragged to the doctor, surrounded by people who were sicker than me, eerily like how I pictured my future. I was forced to eat yogurt with tiny pills mixed in before I was old enough to swallow them. My parents tried to do chest compression therapy every day, twice a day, during which I literally laid down propped on pillows, rotating around five minutes at a time like a rotisserie chicken, squirming and complaining with boredom while one of my parents held a wand with a small vibrating cup on different parts of my lungs.

I graduated high school, I got into a good college. The next year I decided to move from North to the South to be with my brother. I finished college, what a proud moment that was for my family and I! I even got a part-time job related to my field after college. I also worked as a nanny so that my income wouldn’t mess up combination of insurances. After a few years, I worked my way into an amazing part-time job with great insurance – the same insurance that would end up paying almost entirely for my lung transplant. After five years at that place, I was forced to retire because of my health. My career was over.

In a way, leaving the job I loved was the end of any kind of normal routine that I had. When I started getting increasingly sick, my health dominated everything: it was my full-time job. Working my way up to lung transplant was even more challenging. With my practically constant IV-antibiotics, treatments, flare-ups and fatigue, I then had to push myself through a rigorous lung transplant rehabilitation program for months in preparation for transplant, exercising five days a week for 2-3 hours per day. I had all kinds of doctor appointments, testing and retesting, checking and double-checking to make sure I was a good candidate for transplant.

In the end, I waited three-and-a-half months for that transplant. As prepared as you think you are, nothing tests your readiness like being called to the hospital to receive your new lungs. That day, things seemed to fall into place, it felt right, I felt ready.

Part of those long hours waiting were spent thinking about who my donor was. While I prepared for my second lease on life, another family, we knew, would be feeling the loss of a loved one being taken away from them. We knew the donor operating room time, but they told me absolutely no personal information about my donor. All I know is that our blood types matched, our antibodies were compatible, he or she had been exposed to a virus called RSV in their lifetime, that he or she had roughly the same size of torso as I do and that he or she was not considered a high-risk donor. Everything else I know is based on who organ donors typically are: I know that NC has a lot of organ donors, so the donor likely was from here or nearby, likely was white, likely young. Often there is some sort of tragic event that brings about their death which is part of what makes writing these letters so incredibly difficult. How can we recipients expect donor families to be able to share in our gratitude and happiness after the heartbreak and sadness they have lived through? It is an incredible amount to ask.

I wrote to you a year ago and told you about the happiness I have been able to experience because of transplant. Since then, there have been more trips – an amazing vacation to Europe to see friends and family, a trip to the Transplant Games of America in Cleveland, OH, this past summer, more trips to visit family and friends states away. I’ve been able to start writing a memoir. I’ve brought two adorable cats into the family and given them the best kitty home any cat could ask for. It’s time I would never have had without the beautiful consideration of another human being and their family.

Thanks to my organ donor and my donor’s family, my five-year old nephew has learned to share some of my passion for the environment. Thanks to you, I have been able to volunteer countless hours to organizations like Donate Life and The Lung Transplant Foundation and help to raise thousands of dollars to help other patients. Thanks to you, I have this amazing story to tell – a story that is still unfolding - to share with others, to help inspire other people to be organ donors and give others second chances like I myself was lucky enough to have. Thanks to you, my mother just walked up to the front door with a beautiful bouquet of purple flowers (my favorite color) for her daughter’s two-year anniversary.

Thank you for all of this. I am so grateful for the time that I’ve had. It has been amazing. Please return this letter if you are able.

With love,

Your Two-Year Lung Transplant Recipient