Although The Living Legacy Foundation only facilitates deceased organ, eye and tissue donation, our organization is supportive of all members of the transplant community, including those involved in living donation. Because of this, Lauren Muskauski, community outreach associate for The LLF, thought it would be interesting to write about her own experiences as she navigated through the process of becoming a living donor. These blog entries, pulled from her personal journal, will be posted in parts for the next few weeks as she awaits the final stage of her journey: surgery. For more information about living donation, you may visit one of our transplant centers’ web pages: University of Maryland Medical Center, www.umm.edu/transplant or The Johns Hopkins Hospital, www.hopkinsmedicine.org/transplant.
I am going to start from the beginning. It’s no secret I love my job and remain passionate about organ donation, and most people know why. For those who don’t, here is the cliff notes version: my dad died waiting for a liver transplant when I was 19 years old. I was a sophomore in college, and his death turned my whole world upside down. It took some time for me to stop asking, “why him?” and I often wondered why my dad didn’t get the transplant he needed, but others did. Working for The Living Legacy Foundation has allowed me to learn so much more about donation and transplantation, and as a result, I have been able to find the closure I needed in order to completely come to terms with my dad’s death.
In the past three years of working for The LLF, I have been given the opportunity to learn a lot about the cause I so passionately support. Although our organization works on the donor side of transplantation, I’ve always taken an interest in living donation as well. I had wanted to be tested to donate a portion of my liver to my dad when we found out he needed a transplant, but he wouldn’t even consider it as an option. Ever since then, I’ve always been open to the idea of being a living donor. If a friend or family member ever needed something I could provide, I would do it without hesitation. Since The LLF works so closely with Maryland’s transplant hospitals (The Johns Hopkins Hospital and University of Maryland Medical Center), we have had the opportunity to have transplant surgeons from both transplant centers come to our office to tell us more about their living donor programs. Every time I attended one of those presentations, my interest in becoming a living donor was piqued, but not enough to make me want to call a transplant center and offer to altruistically donate a kidney to a stranger.
And then, Judy Waller called me and everything changed. Judy is the grandmother of Tyler Jenkins, a 19-year-old who is currently waiting for a kidney. She called our office to ask for help with getting Tyler’s story into the public in order to try to find him a living donor. I asked Judy to send me Tyler’s story so I could write a blog post about it and work on some media pitching for them. His story broke my heart, and after exchanging quite a few e-mails with Judy, I felt overwhelmingly compelled to try to help Tyler. So without telling Judy or Tyler, I called Hopkins and offered to donate a kidney to him. (Click here to read Tyler’s story.)
I knew when I called that my blood type was not compatible with Tyler’s, but thanks to what I’ve learned through The LLF, I knew that wasn’t the end of the story. There are things like paired kidney exchanges and donor chains, which assist donor/recipient pairs who are incompatible with each other to find another donor/recipient pair(s) with whom they can exchange kidneys to allow a transplant to take place.
The coordinator I spoke with at The Johns Hopkins Comprehensive Transplant Center e-mailed me the paperwork I needed to begin the living donation process. I happily filled it out and faxed it back. Then I received a call letting me know they were interested in having me proceed to the next part of the evaluation process for living donors: tissue typing. This is when they would test my blood to confirm my blood type and tissue type for antigen match and cross-match.
At this point, I still hadn’t told Tyler or his family I was doing this. I didn’t want to get their hopes up, and I don’t want to get my own hopes up either. I was basically hoping I could be the missing piece of a puzzle, and that my decision to be a living donor would mean that Tyler could get his transplant and go on to live the normal life of a 19-year-old.
Stay tuned for more progress on my journey to become a living donor!
More entries from this series:
My Living Donation Journey – Part 1: The Decision
My Living Donation Journey – Part 2: Defending My Decision
My Living Donation Journey – Part 3: Taking a Break
My Living Donation Journey – Part 4: The Approval
My Living Donation Journey – Part 5: Holy Toledo!
My Living Donation Journey – Part 6: A New Kidney for Tyler
My Living Donation Journey – Part 7: Ciao, Left Kidney!
My Living Donation Journey – Part 8: The Surgery
My Living Donation Journey – Part 9: The Recovery