Written by Bill Clark

Part 1 – Our Journey from Fatty Liver to Liver Failure

Becky’s fight is our fight. That became my “rallying cry” early on when my wife was diagnosed with liver disease last year. In hindsight, if we had known how perilous this journey could become, perhaps we would have taken some different turns over the previous ten years. That rallying cry may have sounded very different early on. But let me back up a little.

About 12-15 years ago, Becky was diagnosed with a non-alcoholic fatty liver. It was a pretty low-key diagnosis. It was along the same lines as elevated cholesterol or a bulging disc in the back. It’s a pretty common diagnosis that generally comes with little to no urgency. The usual recommendation from the doctor is, “Let’s keep an eye on it.” I got the same diagnosis from my doctor. So did our son. So have millions of other Americans. In fact, according to a study cited by the National Institute of Diabetes and Digestive and Kidney Diseases^[1], almost one fourth of the U.S. population has nonalcoholic fatty liver disease (NAFLD). Yeah, it’s not ideal, but in and of itself, it’s not really a big deal. Sure, you could lose some weight to reverse it, but then again, couldn’t most of us stand to lose a little weight? Bottom line–we’ll keep an eye on it. Great! Thanks doc. Similar conversations continued over the next several years.

Now let’s fast forward to 2022.

In the summer of 2022, Becky’s primary care doctor noticed that some of her liver numbers were starting to trend up. She was concerned that Becky’s liver may have started progressing from fatty liver to early signs of nonalcoholic steatohepatitis (NASH). There were indications of liver inflammation or damage to her liver, which can cause fibrosis (scarring of the liver), so her doctor referred her to a hepatologist. The first two hepatologist consultations were educational and we walked away with the familiar feeling that the progression of liver disease was usually slow and potentially even reversible when diagnosed in early stages. Still no serious concerns.

This was just the beginning of a journey that we were completely unprepared for. The initial hepatologist appointment in August of 2022 did little to prepare us. The doctor did not express any urgency or great concern. Even with this progression, it is generally accepted that liver disease typically progresses through each stage over the course of several years^[2][3]. Becky was not considered a high risk. Sure, she was a little overweight, but most of us don’t think of ourselves as obese even when that’s the word that shows up on our annual wellness exam. But again, the doctors were still very much of the mindset that this is something we have time to address, and it can likely be reversed. In fact, during this first appointment Becky was given some handouts with suggested dietary changes to help reverse the initial liver damage and the next appointment was set for eight months later.

At the second hepatologist appointment in April of 2023, we started to see signs that the road we were on might have a few twists and turns. Becky’s bloodwork started to indicate her liver was struggling. Her first FibroScan ultrasound showed signs of reduced liver elasticity, i.e., increased scarring. The nurse practitioner that we met with at this appointment started to indicate this should be taken a little more seriously. However, even though it appeared that Becky’s liver was progressing from fatty liver and NASH to fibrosis in just a few months, we were still on the overall timescale of years. The NP encouraged her to make a more concerted effort to change her diet. He also gave us a list of symptoms and signs to watch for that might indicate further progression. He said we would start doing labs, ultrasounds, and appointments every six months to keep an eye on things. This was the first time we heard about a MELD (Model for End-Stage Liver Disease) score that indicates severity of liver disease with a range of 6-40^[4]. It felt like we turned a corner, but Becky’s MELD score was just a 6. Whew. OK, I guess we’ll be back in six months.

Little did we know that somebody had stepped on the gas and this little road trip was about to go into high speed. Becky started feeling worse. She was tired most of the time. She wasn’t able to take one of the primary medications used to treat liver disease at this stage due to an allergic reaction. She started taking another medication to help reduce the increased ammonia levels, but even so, she began to feel a little foggy most of the time. In July, only three months after the last appointment, her stomach was swollen to the point where it was painful, and it became obvious there was more going on. At this stage, even though it had been mentioned by the NP at the previous appointment, we really hadn’t associated this with her liver issues–at least not directly. We were wrong. At our first of many emergency room visits, Becky was diagnosed with ascites (fluid building up due to liver failure) and she had a paracentesis procedure to drain over eight liters of fluid from her abdomen. Let that sink in for a moment. Think about having almost three full 3-liter bottles of soda strapped around your midsection. Yeah, we were definitely on the fast track now.

As we were completely unprepared for these new developments, I called to move up our next hepatologist appointment to early September. There were more emergency room visits to deal with the ascites in the meantime. After a short appointment where we discussed the next stages and set up regular scheduled visits to drain the ascites fluid, the NP referred us to somebody else in the office to begin the conversations about a possible transplant. At this point Becky’s liver disease had advanced directly to cirrhosis. She did not pass Go. She did not collect $200. More lab work was scheduled to look for signs of cancer. Thank God, there were none.

Although we were certainly doing more than our own fair share of praying by this point, this is when we started reaching out to our family, friends, and church. We still didn’t really know if this was a state that Becky could maintain for any amount of time or whether her liver disease would continue its turbo-charged rate of progression. A few weeks after the last hepatologist appointment, we returned to the office to discuss the transplant process. In the weeks between appointments, we had made several more visits to the emergency room and radiology. The transplant specialist we talked to went over a ton of information. We were overwhelmed. The bottom line was we needed to move to the next stage and find a transplant center. Oh, wow. OK. Thanks doc (I guess).

By now, Becky’s MELD score had jumped to 25 so she was eligible to be placed on the transplant list. We started reaching out to see if we could find a living donor. God blessed us with several people that volunteered to be evaluated for suitability. Some were people we had only recently met. We said we would get back to them as soon as we had more information from a liver transplant team. We picked the team at the University of Texas Southwestern (UTSW). I made several phone calls to the doctor’s office, the hospital, and our insurance over the next couple weeks to get an appointment scheduled. The road was definitely starting to feel like a roller coaster.

At this stage, the typical process is to schedule an initial screening appointment, which we did. From there, the clinical team would determine if Becky’s case warranted further testing to determine if she medically qualified for a transplant. That testing would generally occur over the course of several weeks and require multiple trips back to Dallas. The tests would determine if Becky was strong enough to recover from such a major surgery. Within a couple days, the hospital called to say they had an earlier appointment available if we were interested and available. We were.

We went to UTSW in Dallas on October 30, 2023. Becky was almost always feeling exhausted and having a difficult time keeping her thoughts focused. I had to get a wheelchair to take her from the parking garage to the appointment. She didn’t think she could walk that far. We were so wrapped up in getting from one hospital visit to the next and so overwhelmed by the events of the previous few weeks that we didn’t have time to stop and process what this meant. It meant Becky’s liver health was deteriorating at a rate we couldn’t even have imagined. Her body was getting weaker each day. If this appointment hadn’t been rescheduled from the original mid-November date, Becky would have likely ended up back at an emergency room in Austin that week. The road may have taken some very different turns at that point.

Where was I? Oh, yes, taking Becky into the Kidney & Liver Disease Clinic at UTSW. After a fairly brief exam and a few questions, the doctor suggested I take Becky across the street to the UTSW emergency department for further evaluation and likely admission. Again, we were completely unprepared for the speed at which events were unfolding, but extremely grateful to God for allowing us to take advantage of a last-minute schedule change to put us in the right place at the right time. After only a couple days, the UTSW team completed the full medical evaluation that typically takes weeks and determined not only was Becky in need of a transplant and healthy enough, but that she would need to be admitted to the UTSW ICU until a donor was found. Unfortunately, that also meant that she was no longer a candidate for a living donor. Her body was too weak to regenerate a partial liver so that meant we would have to wait for a deceased donor match.

So, there we were. A mere 14 months after the initial diagnosis of NASH, Becky’s liver had progressed to end-stage decompensated liver disease and she needed a transplant to continue to live. What’s my takeaway? Don’t take a fatty liver and NASH diagnosis lightly. Changing your diet and making lifestyle changes is hard. I know. I’m trying to make those changes myself. Waiting for a liver donor match from an ICU bed is harder. Waiting from the couch next to an ICU bed is no Sunday drive either.

Stay tuned for Part Two of This Story, Coming Soon!

About the Author: Bill grew up in Michigan and moved to Austin to attend the University of Texas and pursue a degree in Computer Science. He met the love of his life, Becky, at a hardware store where they were both working part time while attending school. Bill has been developing software for various companies since he graduated in 1985. He and Becky both have an interest in their family history and genealogy and each has been able to reunite a long lost family member through DNA. They have two children and four adorable grandkids which they spend time with and spoil every chance they get. After navigating Becky’s journey from non-alcoholic fatty liver to a simultaneous liver and kidney transplant and then recovery, they both feel God is leading them to share their story, and hope that it will help others that find themselves in a similar situation.