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.
My next step was my first round of testing, which was just having some blood drawn before I went into work one day so they could verify my blood type and antigens. That was a piece of cake. The harder part at this point was deciding how many people I wanted to tell that I had started this process.
I was pretty reserved about letting anyone know about my decision to be evaluated as a living donor at first. I didn’t know how people would react to the news, so I decided to only tell a few of my coworkers and my boss, my roommates, my mom, my cousins and closest friends. While supportive, everyone was concerned about what this would mean for my own health and they wanted to know why I had chosen to give up a kidney for someone I had never met. I feel like I would not have gotten as many questions had I been donating to a family member or a close friend, and I expected this and was ready to justify my decision.
There were a lot of reasons why I decided to be evaluated as a living kidney donor, but the main reason was that I just had an overwhelming feeling this was the right thing to do. I didn’t make this decision on whim; there were a lot of things that factored into it and I gave it a lot of thought before I decided to move forward with testing.
As I mentioned in my last post, when I was Tyler’s age, I watched my dad cling to life while he waited for a liver transplant; a battle he eventually lost. I remember feeling so helpless and lost while I hoped and prayed for my dad to be saved. I know how that felt being on the outside looking in, and I can only imagine how Tyler feels about his own situation. It has to be so much scarier than what I was feeling, and I didn’t really think that was possible considering the year my dad died was the most horrific year of my life.
Losing someone while they wait for an organ is not something you understand until you go through it yourself, but let me assure you, it’s terrible. The waiting, the hoping, the praying – your whole life revolves around this, knowing there is a cure to save your loved one, but also knowing that so many things have to fall perfectly into place to make it happen. I would not wish that on anyone. I miss my dad terribly; there are days when certain smells, music, or places trigger memories of him and I smile, but sometimes those same smells, music or places also bring back the feelings of hopelessness, sadness and fear I felt while watching my dad’s health deteriorate, and those are the worst feelings to have associated with someone you love so much. If I have the opportunity to not only help someone live, but to also prevent another family from going through what I went through when my dad passed away, I will.
There were a few other justifications for my decision that came up in conversations with those I shared my news with, which I thought I’d also share:
• Surgery doesn’t scare me. I know I don’t need two kidneys. It’s good to have, but a lot of people only have one for various reasons, and they’re fine. Also, all the surgeons we work with at both transplant centers are phenomenal. I would trust them with my life any day, as I’ve seen what they can do for the sickest of sick patients.
• I am fortunate to have an amazing support system. I have the benefit of working for an organization that truly understands the importance of my decision, and I have friends and family who love me and understand why I feel so compelled to do this. I have awesome roommates, two of which are nurses, who I know will be nothing but helpful during my recovery, and I have a ridiculously well behaved, adorable, snuggly puppy who will be the best recovery buddy ever. I’m good to go!
• If I needed a kidney transplant and was having as hard of a time with dialysis as Tyler is (complications from dialysis are now causing heart damage), I would hope someone would be compelled to step up and help me, so it’s only fair that I do the same.
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 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