Alive because of another
Transplant Recipient, Minnesota
I used to be a pretty boring person living in the deep south. I didn’t smoke, didn’t drink, played board games, and took care of my family. I was a scientist, a wife, a mother, a foster mother, a daughter, a sister, and a friend. I was everyone’s big sister- baked them cakes on their birthdays and made bread and soup when they were sick. I sang in the choir, created programs to teach kids at the local public garden. In short, I was a very typical person who had a somewhat interesting job in science.
In 2018 all that changed. I received a diagnosis of a rare disease that was eating my liver from the inside and likely had been for most of my life. Over the next few years, my life and identity started to disappear. I had to quit my volunteer work because my meds required I restricted my time in the sun. I had to quit choir because I couldn’t keep the commitment with my fatigue and soon lost the ability to sing at all because of the size of the ascites. I couldn’t cook because my muscles would get so fatigued from work that I couldn’t walk or hold a fork. I turned yellow. Eventually, I had to leave the South for the Midwest because my healthcare needed better experts.
Even with that, it was somehow a shock when I was told I was being placed on the organ transplant list. It takes a while for the reality that you are dying to really hit. My Meld score deteriorated from a 19 in the spring to the 30’s just 8 months later. I received paracentesis. First, it was just a few liters every month. Soon it was a gallon or two every week. By winter I was contemplating leaving my job because I couldn’t make it through a full day without losing control of my muscles. I hammered out a deal with my boss to take a few weeks and see what working remote part-time would look like. That day, on my way home, I got the call “We have a likely liver for you. When can you be at the hospital?”
It was electric, I was crying, I was laughing. I had a chance. I could see my daughters grow, I had more time with my husband. I could finalize my daughter’s adoption, I could see my family again. I could live.
The surgery went well, I was told the new liver just fell right in like it was built for that space. I did have some complications, and the trauma from the surgery nearly killed me. That’s when I decided to turn this around and take my second chance seriously. I started advocating while in the hospital for Rare Disease Day for NORD. I learned the name of every person who came into my room. I listened to their stories. The one name and story I never got to hear was the most important one: that of my donor.
While I pretty much know now what it will be like when I die, I am now rediscovering how to live. I don’t know my normal anymore because I haven’t had a liver this healthy for probably 10 years. I am so grateful for this gift. Thank you so much. My eldest’s anxiety has fallen to normal kid levels since I got home and started getting better. My youngest kisses my scar every day and pronounces that I am all better now. None of this would be possible without you and your loved one. I can’t believe my life has to benefit from your loss, but I hope it brings comfort to you to know that in a way, they are living on in all of the donors like me.
A survivor because of the kindness of strangers,