8:39 PM, Thursday night: expecting a call from my parents, the phone rang. When I saw it was from a restricted number, I started off apologizing “Yea, I meant to call you back sooner, sorry about that.” A little confused, the man asked my name.
The man began after he confirmed who I was, “Hello Rick Nash, I’m calling to tell you that you have a liver offer.” My eyes became transfixed on the wall as he explained to me the details. I was jarred from my seat standing, as if that would help with understanding. He explained all of my options very clearly, I could take the liver, or not and it would not affect my standing for a transplant. There was one hiccup:
It was a high risk liver with HCV.
I told him that I’d call him back with an answer. I had to act fast, an hour was all the time that could be spared. I spoke with my parents and friends to work it out.
In my present state, my MELD score is in the high teens, which means I’m not in an immediate danger. However given my proclivity for the ER, I seem to find myself in life threatening situations every so often. And if I were to be hospitalized it would likely result in my needing a liver.
With that in mind, taking the liver offer becomes a pre-emptive strike approach.
If I take the liver it would take a year for my body to get used to it. By that time I would most likely decompensate and be worse off than I am now. And I may also be unable to take the new treatment(s) in 2016 while I’d recover. This pre-emptive strike is more about risk mitigation than anything else.
Besides the affect of my end stage liver disease, I’m otherwise healthy. I’m young and there is little information on recovery following a treatment for young patients (let alone with MELD scores). I could potentially live for a few more years as I am, before needing a transplant. And there are two upcoming treatments which deal with my scenario and trials I could participate in.
When laid out in front of me, the decision was clear. I’m in it for the long haul.
After weighing the options, I called him back and told him I will pass on the liver offer.
When I signed up for the liver transplant program two years ago, I hadn’t yet realized just how suddenly these kinds of things are. A liver offer has a very limited amount of time to stay viable, and I have to be ready at a moment’s notice to be at that center when the time comes. Which also means I need to have my phone near me at all times.
In the end it I feel it was a potentially worse short run decision with better long run results.