For Dorothy, it's Personal

Dorothy, Procurement Coordinator, Folsom Stem Cell Collection Center

Dorothy, Procurement Coordinator, Folsom Stem Cell Collection Center

Advancements in medical research are critical and life-changing. That’s why, when presented with the opportunity to work in this field, despite having no background, training, or expertise in science or medical research, I jumped on it.

When I was six, my father became very ill and had to have two kidney transplants. His first transplant failed, and we were lucky he had a good relationship with his healthiest, most kidney-compatible sister. Fifteen years later, I had an organ transplant of my own, and became the lucky recipient of one gently used liver.

After my father’s transplant, he was never what you’d call healthy again. His luck ran out about five years later. He spent a year on disability and died in the middle of a long summer night when I was thirteen.

The summer my father died was also the summer I was diagnosed with autoimmune hepatitis. Fun fact: your liver can be destroyed without a drop of alcohol. Much like the diabetes I’ve had since early childhood, and the thyroid problem I inherited from my mom, this was another situation where my over-achieving immune system had gone rogue on my own body. I immediately started a miserable regimen of immunosuppressants and steroids that really heightened the teenager experience and ultimately stunted my growth.

Over time, I adjusted to the medications and everything was smooth sailing until I turned 21, when instead of celebrating with alcohol, I was diagnosed with cancer. My hepatologist (read: liver doctor) brought me in for some scans, and upon receiving the results, told me I had a hepatocellular carcinoma: liver cancer. Apparently, this is not uncommon as a side-effect of autoimmune hepatitis. They were able to zap that tiny tumor in a number of days, but that was the beginning of the end for my original liver. 

That brings me back to my liver transplant. At twenty-two years old, I drove out to UC San Francisco and had a friendly team of doctors swap out the largest organ in my body. It suuuuuuuuuucked. People at the hospital kept congratulating me, but somehow, I was not thrilled to be in that situation. A very sweet technician with a butterfly lanyard held my hand as I drifted off into a long sedation nap.

I woke up choking, though. When the anesthesia wore off, there was a breathing tube down my throat. Guess I tried to pull the tube out at some point, because my hands were tied down when I came to. Thankfully, I was on a lot of drugs, so I didn’t really care.

Recovering from my transplant was long and miserable. Finding the right balance of medications to keep all systems running was no easy trick, and it was weeks before I could so much as put my own socks on. A short way into healing, my incision became infected. A doctor pulled the stitches out and instructed me to pack the opening with cotton every day to prevent infection. He said it would have to heal from the inside. I was lucky that as a result of the massive incision, I had no feeling in that part of my stomach, but again, I still wasn’t thrilled with the situation. My scar looked like a frown and now it had jowls. 

Altogether, despite the discomfort and embarrassing side-effects of my transplant, and despite the pants-wetting terror of being told I had cancer, I was lucky. Eight years out and Mr. Donor’s liver is still healthy and strong. Because of the dramatic advancements in medical research in the fifteen years between my dad’s transplant and my own, I was up and walking within hours of surgery, and I could drive again within weeks. Still though, I think we can do better. I’ll be taking anti-rejection medications for the rest of my life, balancing side-effects and planning out co-pays. My hope is that through the work we do at StemExpress, the next transplant recipient doesn’t have to do those things.  That the next cancer patient doesn’t need major and dramatic surgery, and that maybe the next little girl doesn’t lose her dad.