My Liver Transplant Journey for MASH and Liver Cancer

When I was diagnosed, I already had MASH and liver cancer. So, I was told by my doctors that I needed a liver transplant. But first, I had to arrange treatment for the 3 tumors in my liver. I had radiation and chemotherapy, and the tumors shrank. If they had not responded to treatment, I would not have been placed on the waiting list for a liver.

What are the 2 types of liver transplants?

There are 2 ways to have a liver transplant. You can be listed for a deceased liver at a transplant center, or you can find a living donor. It is probably wise to explore both routes. First, find a transplant center you want to work with. On the Organ Procurement and Transplantation Network (OPTN) website, you can search for transplant centers by organ type and location. My transplant center told me that I had to be able to get to them within 5 hours after a phone call telling me they had a liver for me. I believe that this is still a good metric, even though they have improved their ability to hold a liver for someone.¹

This choice is an important one. Loved ones may want to visit you after the liver transplant surgery, so your location after the transplant will matter. You will also have to visit the transplant center every couple of days after the transplant, then weekly, then monthly, and so on. Geography plays a big role in this decision.

What should I consider before a liver transplant?

When doing my research, I was also interested in outcomes and performance of transplant centers. The Scientific Registry of Transplant Recipients (SRTR) is a great resource where you can research how many liver transplants the center does, patient survival rates, and outcomes.

I traveled across the country to interview different transplant surgeons before making my choice. I had lived in several major cities and had loved ones in those cities. Plus, I was willing to travel to get to the best place. But this is a personal choice, and you may want to go close to home or to a center recommended by your diagnosing doctor. It was harder for me because I was referred to several transplant centers by my different doctors, and, having worked in healthcare, I knew there was a difference and that I had a choice. Not everyone has to do all of this research; it depends on each person's situation.

How does the evaluation and waiting list process work?

Once you choose where you want to have your liver transplant, you will meet with the transplant surgeon. In fact, you will meet with the entire team before they agree to place you on their waiting list. You will go through a comprehensive evaluation process covering your current health. They will evaluate every organ and system in your body. You will have multiple lab tests and, in fact, I remember having 29 tubes of blood drawn on one visit. My transplant center required that I be alcohol- and substance-free for 6 months before evaluation. My evaluation considered psychiatric issues, my support system at home, and my financial situation. The treatment team ultimately decides whether or not to place you on their waiting list. Following my evaluation, I ended up being listed at 2 major transplant centers.¹

I was then assigned a Model for End-Stage Liver Disease (MELD) score. MELD is the scoring system for assessing the severity of chronic liver disease. Scores range from 6 to 40, and mine was 11. The average MELD score at the time of a transplant in the US is around 30. The MELD score is calculated using a formula and determines where you are on the waiting list.^2,3

The important takeaway here is that people who rise to the top of the waiting list for deceased livers for transplant tend to be extremely ill. I felt like I was very ill when they put my MELD score at 11. But they also told me that I would have to become much more ill to rise to the top of the waiting list. Shortly after that, they told me I had 6 months to live.

How do I find a living donor?

At that point, I learned about living donor transplants. I read about it online, researched it, and found transplant centers that had done high volumes of living donor transplants. That is when I was listed at the second transplant center, because they did the most living donor transplants in the country at the time. My first transplant center had never told me about the possibility of a living donor transplant.

I wrote a letter to family and friends and posted it on social media. I explained that I needed a living donor, described exactly what that meant, and asked for volunteers. That was the hardest thing I have ever done. But people responded! Including my half-sister. It was a generous response.

She had to go through the same comprehensive evaluation process, and they cleared us for surgery and scheduled it. People do better with living donor transplants, mostly because they do not have to wait until they are extremely sick to rise to the top of the list. We both met at the hospital where it was scheduled and were operated on at the same time.

What is the liver transplant experience actually like?

During a living donor liver transplant, the donor and the recipient are in different operating rooms at the same time. 60% of the donor's liver is removed and placed within the recipient after their diseased liver is completely removed. The 60% from the donor is attached within the recipient. The recipient's surgery takes longer than the donor's; it can be anywhere from 6 to 12 hours. But months later, the donor and the recipient have a full-sized, functional liver. The liver is an amazing organ, and it regenerates.⁴

From my perspective, recovering from a liver transplant is like recovering from any abdominal surgery. I had 2 C-sections and a partial hysterectomy prior to my transplant. The transplant incision is quite large and, of course, the surgery is very complicated. It requires disconnecting and reattaching major vessels and displacing the xiphoid process (the pointed bottom end of one's sternum). I still have pain and sensitivity from that displacement, and a noticeable bump sticking out of my chest. Of course, this is a small issue compared to my scars, and inconsequential, really.⁵

What should I expect after a liver transplant?

I was in the intensive care unit (ICU) for less than 24 hours and was up and walking by the next day. I didn't find recovery difficult. I was discharged 6 days after surgery. At first, I was asked to come back to the clinic frequently, then those visits tapered off. Four years later, I have just been moved to annual visits with my transplant doctor.

The biggest post-transplant issue may be the medications (immunosuppressants) you will take for the rest of your life. Make sure you discuss them with your doctor and that you understand how to take them. They prevent rejection of your liver and may have their own side effects.