Living Donor Liver Transplant Provides New Lease on Life
By Carolyn Evans
If you have PBC, the idea that someday you might need a liver transplant isn’t easy to think about. I know I didn’t want to consider it, when I was diagnosed in 1992.
But I wish I’d been more prepared for the challenges that arose in 2005, when I learned that I needed a new liver. I hope that sharing my story, today, will help you if and when a transplant becomes necessary.
My Life With PBC
I was diagnosed with PBC when I was 32. While medications to address the symptoms and slow the progression of the disease work for many people, they didn’t work very well for me. On top of that, I experienced agonizing itching and debilitating fatigue pretty much from the start.
It wasn’t easy, but I did my best to ignore the symptoms and devote myself to raising my three kids, and also worked part-time to help my husband’s consulting business. I didn’t want my kids to grow up with memories of a mom who was always sick.
But by December 20O5, I couldn’t even pretend to lead a normal life. I was losing weight and my eyes were yellow and glowing. The scarring on my liver had progressed to the point where my doctors in New York City told me that I needed a transplant.
While that was scary news, I tried to stay positive, and motivated myself by imagining how a new liver would improve my health and give me more energy for my family and for life in general.
In order to get a new liver, though, I had to overcome a difficult challenge: my “MELD” score wasn’t high enough.
My “Meld Problem”
MELD (“model for end-stage liver disease”) is a nationwide scoring system based on lab tests that helps to determine who gets priority for liver transplants.
Unfortunately, no matter how sick I was, my MELD score didn’t qualify me to be a high priority for a transplant in the New York metropolitan area. It was a matter of supply and demand; too many other people with even higher MELD scores needed new livers, and there weren’t enough available in my region.
That’s an all-too-common problem for people with PBC and other liver diseases. It’s one reason why the average wait time for a liver transplant is several years.
Fortunately, my doctors at Mount Sinai Medical Center were liver transplant experts who made me aware that I didn’t have to passively accept the long wait. I had other options:
I could move somewhere else, like Miami, where the wait list was shorter and I would have been eligible for a transplant sooner based on my MELD score.
Another option was to stay where I was and find a living liver donor. I was particularly fortunate as my home is near a large, medical center that has significant experience in living donor liver transplantation.
Finding a Living Donor
While looking into the possibility of moving to Florida, I simultaneously began a quest for a living donor.
I quickly realized that living liver donors need to give up weeks of their life. Their insurance may be impacted, and they must be willing to take the health risks that are involved with a major surgical procedure.
As ALF National Medical Advisory Committee (NMAC) Co-Chair, Dr Sammy Saab points out, “The risks to the living donor are real and can even include death.”
To sum it up, it’s not easy to ask someone else to make this sacrifice, and I wasn’t even sure how to make the request.
Fortunately, I was –and am-very close to my older brother, and I could be very frank when I called him soon after learning that I needed a transplant. “Eddie” I said. “This is it! I’m not going to survive if I don’t get a new liver.”
I didn’t even need to ask him to volunteer to be my donor. He offered to fly to New York City from Florida, in order to get tested and determine if he was eligible. At the same time, my husband got the word out to his large extended family (he has nine brothers and sisters). One of his sisters, Cathy, also volunteered.
But it turned out neither Cathy nor Eddie met the criteria—based on blood type, body size, age and other factors—to be my donor.
So now what? I was getting sicker, and more desperate, every day. So Cathy sent out an all-points-bulletin to the extended family: “If we don’t give her a liver, she’s not going to make it!” Thankfully, another sister-in-law, soon stepped forward and got tested. She was approved to be my donor in January 2006.
My New Lease on Life
My transplant surgery occurred in March 2006 and took 14 hours. I woke up briefly, and then a 24-hour coma was induced to allow my body to adjust to the new liver. On the third day, while recovering in the ICU, I saw my sister-in-law (my donor and guardian angel) shuffle into the room in her hospital gown.
I’ll never forget her reaction: “Oh my God, your eyes are white. You’re not glowing. Your skin is clear. I can’t believe it! You already look so much better!” Neither of us was in good enough shape to hug each other, but we both cried tears of joy.
We were both out of the hospital in less than a week.
Now, thanks to her and my skilled surgical team, there are no more varices. The itching is gone. The fatigue is still a problem, but it is much better than it used to be. I have more energy to devote to my family and to giving back to my community, including my fellow PBCers (I help out the American Liver Foundation whenever I can).
Based on my own transplant experience and on-line discussions in the PBC community, there are a few things I wish I’d known before.
Obviously, I was incredibly lucky because I was blessed with a large, extended family that included people willing to be donors. But if that’s not your situation and you need a new liver, don’t give up, because your “family” is larger than you think.
While your living donor could be part of your family, it could also be a close friend, a contact on social media, a former classmate, or someone else in your circle of acquaintances.
There are many ways to connect with potential donors. Along with Facebook, Twitter and other social media, you can also get the word out at school or work, in your gym, and your place of worship. You don’t need to go it alone. It can be helpful to find a “donor champion,” someone who is willing to take the lead in spreading the word about your health crisis.
The main thing is to keep trying.
Another piece of advice: don’t be shy about discussing your PBC with family and friends, even if you’re in a relatively early stage of the disease. As a shy person myself, I know that’s easier said than done. But if you ever reach the point where you need a transplant, it will be easier to find a living donor if you already have a large network of people who are familiar with the disease and what you’ve been going through.
For more detailed advice and other stories about people who gave and received living donor transplants, we encourage you to attend our 3/20 Living Donor Liver Transplant webinar with UPMC. Register Here!
Note: Living Donor Liver Transplants are high-risk procedures that can cause potentially life-threatening complications. Donors make a serious commitment when they agree to this procedure. To learn more, click here.
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