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Living Liver Donor Story
Folks, this is hard to write. Not because I don’t want to share, but because I don’t know how to share and what to share. I typically write in a casual, light-hearted, sometimes sarcastic tone, but to do that with this topic seems risky. Those who know me in real life know I’ve taken this decision very seriously, even though I share about it enthusiastically because I have heaps of hope.
So I’m just going to write as I normally would and pray I can convey the upbeat sense of hope I have alongside the gravity that is due this topic. Let’s begin.
Responding to the need.
February 2nd: I saw an odd post from my aunt on Facebook; a picture of a typed out letter. Normally I would’ve dismissed it as some share-me-or-else meme, but something made me read it.
It was from our cousin.
It was about her son (near my age).
His liver is failing (primary sclerosing cholangitis) and it is only a matter of time. He isn’t high enough on “the list” to get a cadaver liver.
His only option was living organ donation. They needed someone with Type O blood, between 18 and 65, and really healthy. They hadn’t found a match yet and this letter was a last-ditch effort.
If anyone was willing and able, then Step 1 would be filling out a health history questionnaire from the University of California San Francisco (UCSF).
What’s going through my mind?
First there was sorrow for my cousin’s situation. I had no idea he had been so sick for so long. Then there was surprise that I was a blood match and a feeling that I’d be a good candidate. I figured I should at least fill out the questionnaire, right?
The decision to act is often the most difficult step. I needed more information. I googled his diagnosis, looked him up on Facebook, and searched for living liver donor stories. Some stories were terrifying, some were heart-warming and magical. That’s the internet for you. I also called mom to see if she knew anything more about how my cousin was doing.
NOTE: I don’t know this side of our family that well. I’d met this cousin once, 8 years ago. We had a great convo and kept in touch for a little while. Even though his mom (my 3rd cousin, I think?) had listed her phone number in the letter, I felt awkward and strange calling her. So I waited.
Fun Visual: This quick CGI video
explains the transplant pretty well.
Click to go to the video.
Armed with some idea of what being a liver donor meant, I told J (husband) about my cousin’s situation. I shared what I had learned and that we both met the criteria for being a potential donor. We both decided to fill out the questionnaire. Maybe we could help. Maybe not. Either way, we were willing to find out.
Things that led me here.
For all the “big and crazy” things we do in life (running marathons, having kids, donating organs), there is usually a path that led you there that makes sense when you think about it. Thinking on what led me here has really helped me see God’s hand in this journey and therefore, find peace and focus on hope. So here is a piece of my past experiences that I think helped lead me here.
When I started running it was for a sports charity program, Team in Training. Raise money, run marathons, repeat. The experience brought perspective. The pain of a long run is nothing compared to chemo. Fund raising struggles are nothing compared to medical bills. We gladly endured a little pain and struggle knowing we were helping those fighting for their lives. It was devastating when a fight was lost. Honored teammates like Alessandra and Jamen are not forgotten.
We joined a bone marrow registry. A Be The Match representative came to a training run and collected spit samples. I visualized how I’d proceed if I were found to be a match. I imagined getting that call… or that packet in the mail… or however it works. That’s just how I think. What would I do? I knew that if I ever got the opportunity, it would be an incredible honor to be a donor.
So you see, God’s been preparing my mind and heart for some time. I frequently share how those 4 years with Team In Training transformed my life by turning me into a runner. I’m only now realizing how that experience also prepared me for being a living organ donor.
READ NEXT POST: Beginning the selection process. The questionnaire, blood work, and finding a donor mentor.
I will continue my living liver donor story (the tests, searching God’s heart, financial stuff, family considerations, etc) over the course of the next several weeks.
Each time I’m going to this GoFundMe page. It was set up by my cousin’s immediate family to give our broader community an opportunity help with the costs we’re facing to save his life.
His insurance covers the cost of my surgery and related medical expenses. A donor assistance program will help with travel expenses for me and one care provider.
However, what is not covered are the expenses for our families, taking time off work and staying near the transplant center in San Francisco for a week, minimum, (flights, hotel, gas, parking, food, etc.) and…the same expenses every time we return to San Francisco for a post-transplant check-up. I’ll have up to 6 check-up trips to UCSF and there will be many more for my cousin and his immediate family.
Thanks for reading.
If you have any questions for me or are someone who is considering becoming a living donor yourself, please feel free to contact me.