Written by Bill Clark
Part 2 – Our Journey from Liver Failure to Transplant
Continued from Part 1
“A new liver.”
That was Becky’s answer pretty much every morning from her ICU bed when the medical team doing rounds asked if there was anything she needed. It was true. My wife needed a healthy liver to survive. That was why we were there. We had come to the University of Texas Southwestern (UTSW) hospital in Dallas to find out if Becky was a candidate for a liver transplant. How did we get from being a potential candidate to ICU in just a few days?
We had traveled the road from nonalcoholic steatohepatitis (NASH) to decompensated end-stage liver disease at breakneck speeds over the last year. It felt like a race. After only a few visits with the hepatologist team in Austin, and several emergency room and hospital visits, we had been referred to the Kidney & Liver Disease Clinic at UTSW in Dallas for transplant evaluation. Our first appointment at UTSW was on October 30th. The office visit with the medical team there turned out to be merely a pit stop. The doctor recommended we head over to the UTSW Emergency Department and possibly get Becky admitted to the hospital for further evaluation. Well, that was unexpected. We would be spending the night in Dallas.
This was the beginning of the next leg of a journey that we were not prepared for. Becky was admitted to the hospital that day, and the medical team came by the next day to talk about what would happen next. The plan was twofold. First, they would verify that Becky’s liver health was the primary problem and get her stable. Second, they would fast track a general medical evaluation to determine if Becky was healthy enough otherwise to be a candidate for liver transplant surgery. We had been sent over to the hospital the day before because the medical team was afraid that Becky wouldn’t be able to take care of herself due to her general weakness and shortness of breath. They wanted her to be strong enough for surgery.
The next few days were a whirlwind. There were scans, tests, new meds, blood transfusions, more tests, visits with doctors, and meetings with social workers. Her MELD score[1] had jumped to 32. For the remainder of this Dallas leg of our journey, I would primarily use a blog I had created to keep friends and family updated. Feel free to head over to Becky’s Fight is Our Fight to read up on the entire journey – well, at least as far as we’ve been so far.
At this point, we were still hopeful that we could find a living donor that was a match. We were blessed to have several people step forward and express interest in learning more. God had placed us in a Bible study group only a few months earlier, and two of our new friends from that group had volunteered to be evaluated and to find out what donating would look like. First, the team needed to find the cause of Becky’s high white blood cell count (generally a sign of infection) and get her blood pressure stabilized at a level higher than the 70/30 range she was at when she arrived.
Becky was feeling better after a couple days in the hospital, but as a result of all the tests, we were in for a couple more speed bumps on this journey. First, we learned that renal dysfunction is fairly common in liver disease patients.[2] The severity of Becky’s liver failure was starting to put extra pressure on her kidneys. The recommendation at this point was to start continuous renal replacement therapy (CRRT). CRRT can be thought of as a type of continuous dialysis that removes toxins and excess fluids from the body. This type of treatment requires careful monitoring by the nurses and is only administered in the ICU.
Second, Becky’s body was not healthy enough at this point to keep the living donor option on the table. We would have to wait for a deceased donor match. At this point the medical team made it clear that Becky would be in the hospital for the duration. She would go home only after a liver transplant, or not at all. Yep, “not at all” was a possibility. Either way, we had unexpectedly moved from a few days to an extended stay in Dallas.
There were a lot of logistics to work out regarding work, paying bills, taking care of an empty house (well, empty except for the cat), deciding where I would stay in Dallas, and so on. I wasn’t sure how my employer would react to this extended time away from the office, but I didn’t see that I had any other option than to stay in Dallas with her. Rather than go into all the details, I’ll simply say that I’m grateful God made a way to work that all out.
By November 3rd, Becky was stable enough to be placed on the liver transplant list. Although we had spent the last year on this journey, all this happened in only the first five days in Dallas. Becky was a new patient to UTSW. They had some catching up to do. Since the kidney team was now involved, we were blessed to have a very meticulous doctor on the team. After reviewing Becky’s history, he saw indications that Becky’s kidneys had been showing signs of acute kidney injury (AKI) several months earlier. Based on that history, he recommended Becky be considered for a simultaneous liver and kidney transplant (SLKT). Since kidney failure is common in patients with AKI prior to their liver transplant,[3] approval for SLKT is becoming more common. Becky was removed from the liver transplant list and after getting the additional approvals, the team placed her on a dual-transplant list a couple of days later.
As I mentioned earlier, I was fortunate enough to be able to stay in Dallas during Becky’s entire hospital stay. I feel it’s important to emphasize how important I think it is for a patient in her condition to have an advocate there for support. I don’t want to minimize her need for support during the previous year, or during recovery, or any other time, but I feel like it was most critical during this stage. Over 40 days in ICU is a lot for anybody. In some ways, there wasn’t much she needed to do. After all, she was connected to the CRRT machine and several IVs, and the nurses were taking great care of her. She mainly needed to try to move around a little when the physical and occupational therapists came by, and let us know if she felt anything was wrong. However, it didn’t take long for ICU delirium to affect how consistently she could effectively interact with the medical team.[4] That is probably worthy of another whole article at some point.
I made every effort to be at the hospital for as many of the nurse shift changes as possible, as well as when the medical teams made their rounds. I feel strongly that my presence and ability to answer questions for Becky about her current condition and her medical history, as well as ask questions after hearing the team’s discussions, were helpful in getting her the best treatment UTSW could provide. I feel it would have been much more difficult for them to have accurate information without my involvement and ability to provide information. Even in ICU, the nurse is not in the room for their full 12 hour shift, and they don’t have the full history. I was able to provide details about Becky’s medical history as well as add to the information typically shared during nurse shift changes or medical team rotations. I suspect Becky’s road would have been a little bumpier without me there as an advocate.
While we’re on the topic, I feel like I need to add that caregivers need support too. I wasn’t only Becky’s advocate. I was her primary caregiver, other than the medical professionals, of course. Everybody is different. Some need more support than others. The kind of support one caregiver needs may look very different from another. Mine was the blog I created and still update from time to time. It provided two types of support. It allowed me to process what was happening and figure out what questions I still had. It also gave me a chance to reflect on events as I was putting it all into words. There are parts of that blog that still bring tears to my eyes when I go back and read it. It also provided context for friends and family, some of whom I’ve never met. It allowed them to provide words of support and encouragement and lift us up in prayer. I continue to appreciate them and thank them for being there.
Back to the ICU. Getting a transplant was now the only possible road to recovery. We were getting daily visits from the surgical team. The team initially indicated that a transplant could come quickly, maybe even within a week. As the days became weeks and Becky’s MELD score continued to hover in the low to mid 30’s, I started to wonder how much time she had. It’s hard to see your loved one connected to so many machines and not ask yourself those questions. Even though the surgical and medical teams were always encouraging and didn’t seem overly concerned, I’m an engineer, so I searched the internet for data. In rough numbers, what I discovered was that somebody with a MELD score in the 30’s has a 50-50 chance of surviving for 3 months or more.[5] Like so many other things that had happened over the course of the last year, these numbers were unexpected. I’m not even sure what I did expect, but not that.
Now the clock was ticking. One week in the ICU. Becky went from being on the liver transplant list to needing a liver and a kidney. That took some time to process. Two weeks in the ICU. The MELD score bounced up and down. A higher score meant she was higher on the waitlist. Too high meant she would no longer be healthy enough for surgery. It felt like a tightrope walk with no net. Three weeks in the ICU. The ICU delirium became a more permanent condition. Becky regularly asked me to just take her home – sometimes multiple times a day. Her hallucinations became more vivid. Multiple weeks of working from the couch in Becky’s room was beginning to wear on me as well.
After months of unknowns and uncertainty and weeks in the ICU, we finally got the news we had been waiting for. The surgical team let us know they had a candidate they were considering. There was a potential donor on life support, and the team was evaluating all the information they had to confirm it would be a suitable match. They let us know the next day that everything looked good, and that the organs would be transported in time for surgery the following morning, November 28th. It had been almost a month since we first came to Dallas for a routine medical appointment. We finally had some news that gave us hope for a positive outcome, and it looked like we might finally be on the home stretch.
So, there we were. Thirty days after being admitted to the hospital with end-stage decompensated liver disease, God had provided what Becky had been asking for almost every day. She was getting a new liver! And a new kidney was coming along for the ride! The surgery went well and Becky’s new organs meant she would continue to live. The road since then hasn’t always been easy, but we’ve been able to travel it together.
What’s my takeaway from this part of the journey? There are many, but there are a couple I want to emphasize. First, extended hospital stays are tough, for both the patient and the caregiver. Both need support, and the patient often needs an advocate. The journey is filled with unexpected turns and having a co-pilot to help navigate can literally be a lifesaver. Second, our faith and trust in God helped us make it through. He provided us comfort when we needed it, and He gave us support through family and friends all along the way. He was the real navigator.
Stay tuned for part 3 of Bill’s story!
[1] https://www.upmc.com/services/transplant/liver/process/waiting-list/meld-score [2] https://pmc.ncbi.nlm.nih.gov/articles/PMC4172733/ [3] https://www.mdpi.com/2673-3943/2/3/32 [4] https://www.physio-pedia.com/ICU_Delirium [5] https://www.healthline.com/health/cirrhosis-of-the-liver-life-expectancy#life-expectancy-chart
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.
