Should I Get Listed for a Liver Transplant?

Some of you may be cared for by a hematologist who practices at a transplant center. I was wayyyy end stage liver cirrhosis during hepatitis treatment. They wanted me to go through the process of listing for a liver transplant in case of an emergency. If you’re like I was and wondering if you should get listed for a liver transplant, read on and click the links to learn more. Then talk it over with your family, friends, and medical team.

First, I totally understand that no one wants to get listed. A liver transplant is a last-ditch effort to save your life. At one time, it felt like the scariest thing that could happen to me. Then it happened and I lived through it. But I was offered to be placed on the list 4 years before I actually listed. I simply chose not to for various reasons that I’ll share with you today.

Reason for a transplant

Your liver fails - If you have ESLD or severe cirrhosis from any cause, including hepatitis, fatty liver, PBC, NASH, or other causes, your body still may be able to compensate. For others, once the liver gets to the point of no return, it is pretty much not able to filter. You get a lot of other organ failure, like kidney, heart, spleen, and stomach.

In my case

My spleen swelled up, my kidney failed and created ascites, my heart pumped blood back causing bleeding varices into my stomach, but medication helped with all of that. Honestly, with diuretics, bandings, TIPS procedure, and beta blockers, you can stabilize. I was back to work part time within a year and chose not to go through the process of listing for a liver transplant.

Reasons I chose not to get listed

1. Listing takes about 3-5 days of rigorous testing unless you are fully hospitalized long term. There are literally dozens of initial tests and I’ll put them in another article.
2. The liver transplant hospital where I would list was too far away. It was a full day trip that would have to be made every 3 months to repeat some of the tests in order to remain listed.
3. Staying listed is expensive. Even with insurance, there are out of pocket expenses. It includes things like travel, meals, hotel, co-pays, time off of work, and more.
4. My body was compensating. As long as I stayed with my healthy lifestyle, a clean diet, and moderate exercise, my doctor said it was ok not to list.

While you’re not listed

It’s important to stay in a good relationship with your medical team if you have end stage liver disease. I traveled there every 3 months to get labs and an ultrasound.  I also had regular varices banding. That’s how they discovered liver cancer, and began targeted chemo on the tumor while I was waiting on the list for new liver.

Should I get listed for a liver transplant?

You may still wonder, but if you have been cured of liver inflammation, your liver will begin to heal. Of all the reasons for a liver transplant, hep C is one that has a cure. Many people begin to feel better. Some, like me, had hep C for a long time and ended up with liver cancer. It’s a miracle to be hep C free and have a new liver. Everyone has a different journey and I hope this helps you discuss your options for listing with your family and medical team.