My Living Donation Journey – Part 5: Holy Toledo!

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.

Finding out I was approved as a living donor candidate was a huge deal to me, and I was in celebration mode for at least a week. I began openly telling people of my plans to donate and that I had been approved, and most people I told were very supportive. I started to wonder when my surgery would actually take place and who would be getting my kidney. I also began to wonder about Tyler and how he was feeling about all of this since up until this point, I had only been in touch with his mom and grandmother. I decided it was time I opened up communication with him as well, so I did what any logical person would too: I added him as my friend on Facebook.

Tyler accepted my friend request pretty quickly, and then I tried to figure out how to go about introducing myself to him. What was I supposed to say? I was at a complete loss. Lucky for me, I didn’t have to worry about introducing myself to him because he went ahead and Facebook messaged me first, thanking me for stepping up to donate my kidney so he could get one. His message was sweet, sincere, and a little silly; I must have read it about fifteen times before I responded. We exchanged a few quick messages back and forth for a little while and I loved how talking to him was so much like talking to my little cousins.

The next few weeks seemed to drag as I waited to hear if a surgery was ready to be scheduled. I hadn’t heard much, and I spoke with Tyler and Jenny, his mom, frequently. The transplant center never called them to tell them I had been cleared as a donor, which I thought was a little strange, but we kept each other in the loop whenever we heard anything; the only thing was, we weren’t hearing very much to share with each other!

Then on March 20th, craziness ensued. I was wrapping up at a high school health fair, educating students and their parents about organ, eye and tissue donation, and I got an alert on my phone that I had received a message from Tyler on Facebook. I read it, and all it said was, “Lauren! The surgery is April 17! They found a kidney – it’s from a 35-year-old man. My mom said she’s gonna call you and give you the details.”

I was so confused. I couldn’t figure out if Tyler meant another match had come forward to be tested and turned out to be a match, or if I was still donating. If I was still donating, I assumed that meant I would be also going into surgery on April 17th, and if that was the case, I was confused about how a surgery could be scheduled without asking me? I wrote back to Tyler and asked him to clarify what his message had meant, and then I went into panic mode. I felt so conflicted – obviously I was elated that Tyler was getting a kidney, but part of me felt like I had no control over the situation and it was causing me to freak out.

As I was getting ready to go home for the day, I received a second message from Tyler letting me know I was still donating my kidney, but that he didn’t have any other info. I relayed this information to my director, who looked at me and said, “You need to calm down and take a deep breath because all of the color has drained from your face.” I was so overwhelmed! April 17th was less than a month away!

Once I got home, I got myself settled and tried to stay calm. I spoke with Tyler’s mom on the phone, and we tried to piece things together and figure out why I hadn’t been contacted about any of these surgery plans. We decided I should call my transplant coordinator to get to the bottom of things, so I called and left a message. The next morning, my transplant coordinator called me and let me know she hadn’t heard anything about Tyler’s surgery being scheduled and that she would look into it. Within a few hours, she called me back and explained what had happened.

Since Tyler and I were a part of a donor chain, although a donor had been identified for Tyler, a recipient had not yet been identified for me. I was also assured that I’d be consulted before my surgery was scheduled. What a relief! This was a bit of a learning experience for me, because this whole time, I had assumed Tyler and I would go in for surgery at the same time. I hadn’t even thought of the fact that our surgeries might be scheduled for different times since I was donating on behalf of him (to someone else) rather than donating directly to him.

After this ordeal, things moved very quickly:

March 22nd – I received a call from my transplant coordinator asking me if I would be available to donate on May 1st

March 23rd – My surgery was officially scheduled for May 1st.

April 3rd – I found out my kidney would be going to a 44-year-old woman in Toledo, Ohio

I wanted to know more about my recipient, but was told I wouldn’t be able to find out more unless my recipient agreed to release more information to me. I also learned I most likely wouldn’t learn more about her until after the surgery. I was a little bummed out about this, but this is actually a policy similar to The LLF’s in regards to donor family/recipient correspondence, so I understood.

The transplant hospital in Toledo requested some blood from me, so I had my blood drawn by a lab and FedExed it to Ohio. Then the only thing left for me to do was wait for transplant time!

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

Advertisements

About Lauren

Lauren Muskauski is the communications associate at The Living Legacy Foundation. She heads up many community outreach initiatives and projects, with a focus on middle school, high school and college outreach. She also manages The LLF’s and Donate Life Maryland’s presence on social networking sites, such as Twitter and Facebook. Lauren’s commitment to donation started early when she registered as an organ, eye and tissue donor at the MVA upon receiving her first drivers’ license, but was then reinforced a few years later when her father passed away while waiting for a liver transplant. Now, she continues to be inspired on a daily basis by the generosity of donors and their families, as well as the gratitude exhibited by every recipient she meets.
This entry was posted in Living Donation, Transplant Recipients. Bookmark the permalink.

One Response to My Living Donation Journey – Part 5: Holy Toledo!

  1. Judy Waller says:

    Lauren, I would be willing to make a wager that there are not many who work in the transplant education programs that have stepped forward to donate an organ, tissue or eye parts etc. You are DEFINITELY a very special and dedicted human being on this planet. I can only say you are walking the walk to show how to donate an organ to so many. I can only hope that this entire universe will get a chance to follow your journey to the completion of donating. Thanks to you Lauren, our Tyler has a kidney now (through a chain of donations) and is elated that he has been able to eat a regular meal and has not gotten sick to his stomach in almost 3 years. Now, we can all help those who need us, by not burying our organs or those who may be able to live on by recieving a part of our loves ones IF they are in an accident etc. When the time comes that we may be young enough to donate or famillar with the donation program we can feel the calling to donate. Also in case we ever need to face making the call that our loved one can make so many fellow human live through a generous donation. Bless all who work to make this possaible and most importantly, help those who must make the decision to help others while they themselves are grieving. Thank goodness, there are people like you who can help a dream come true for a young man who wants to be able to go to school and become doctor to help others whom life has dealt a hand that not one wants to play. Love and thanks, Tyler’s grandmother

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s