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.
After I began sharing my desire to be a living donor, at the request of my family and friends, I began to really analyze what this decision would mean for me and for my future. I did a lot of research, joined a Facebook group specifically created as an online support group for living donors and those going through the evaluation process, and tried to get as much additional information as possible.
During this research stage, I received a phone call from my transplant coordinator letting me know I was cleared to move on to my next round of evaluative testing. At this point, everything was up to me to schedule at my own pace. I received a packet in the mail explaining everything I needed to do and letting me know I was not required to pay for any of this testing; it would all be covered by the transplant hospital.
I was nervous about all the tests, since I knew I was about to have the most extensive physical of my life. I was afraid the tests would reveal something about my health that would rule me out as a living donor candidate, which is a scary thought. I feared the worst; during my research and in reading posts on the living kidney donors Facebook group, I had read stories of people finding out they had cancer, hypertension, kidney disease, etc. while going through this evaluation process. What would I do if any of my tests came back and said there was something medically wrong with me?
In addition, I started to notice a bit of apprehension from my family about the process. Even though I had asked my mom to keep this news to herself until I was farther along in the evaluation process, she told my grandmother, who was less than thrilled with the news. My mom was (and still is) nervous about me donating a kidney. She’s my mom, that’s her job, so she of course went to my grandmother to talk about it. I wasn’t mad at her for it, but I was upset because I hadn’t wanted to tell my grandparents about this until I knew it was definitely going to happen. I know they worry, and they also don’t always understand why I’m so passionate about organ donation, so I knew they were going to have a hard time with this.
After a long heart-to-heart conversation with my mom, I suddenly felt like my decision to donate a kidney, which I had thought was a very unselfish one, was actually more selfish than I had imagined. I was causing my family a lot of un-needed stress, and I felt really guilty about it. It seemed like no matter how hard I tried to explain why I wanted to do this, and no matter how much my mom understood my justifications, she was still so scared for me to be giving up a kidney. I think if I were giving a kidney to a family member or close friend, she would have been a little more at ease with it, but because she didn’t fully understand my feelings about this, it was very hard for her to deal with. This made me really start to question whether I wanted to move forward with the process, but I also felt very guilty about postponing testing knowing that Tyler was so sick and was still waiting for a transplant while I couldn’t make up my mind about what I wanted to do.
Ultimately, the stress really got to me and I decided to take an indefinite break from the evaluation process. Sometimes people would ask how the evaluation was going, and I would simply say “I’m still working on scheduling tests,” which was not a lie, but the fact of the matter was I was still trying to figure out what to do.
With the holidays quickly approaching, I knew I had the opportune time to speak with my entire extended family about the donation process. At this point, I had only spoken to my cousins about my intention to donate, so they were the ones I wanted to talk to. I didn’t have to wait long to do so either; on Christmas Eve, my younger cousin, Morgan, asked, “hey, are you still donating a kidney?” Not quite the conversation starter I was hoping for, but it opened the door for me to talk a little about their concerns. I was relieved to find out the consensus among my cousins was that it was “a really cool thing to do.” It made me feel a lot better to have their support and after the talk, I figured I didn’t have much else to lose by picking back up with the evaluation process, so when I got home from my Christmas vacation, that’s what I did.
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