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
