Part 3 – Our Post-Transplant Journey (the first year)
Continued from Part 2
From the nurses and doctors to the therapists and social workers and everybody else involved in Becky’s care, the message was consistently the same – “It might not feel like it right now, but it will get better.” After everything that happened over the previous year and half, it was sometimes hard to see a milestone that far down the road.
The road leading up to Becky’s liver failure and transplant had been a rough one. In many ways, the road from liver failure to transplant had been a race. After a brief pit-stop in the operating room, we soon learned that the post-transplant road would have its own share of bumps and unexpected turns. In the blog that I’ve maintained over the course of this experience[1], I’ve used the “journey” and “road” analogies many times. We’ve come to realize this is a road trip that doesn’t have a finish line but making it to Becky’s one-year transplantaversary (transplant anniversary) was a great milestone.
Becky had been diagnosed with nonalcoholic fatty liver 12-15 years ago. It was just something to keep an eye on – until it was more than that. In the summer of 2022, her liver numbers started trending in the wrong direction. Becky’s liver failure rapidly progressed from those first indicators to full blown liver failure by October of 2023. A progression that generally happens over the course of years had been compressed into 15 months. After four weeks in the ICU, Becky received a liver and kidney transplant. That’s where this leg of the journey begins.
Now that Becky had her two new organs, we had to wait for them to start working. The liver was actually the more cooperative of the two. It started working almost immediately. The kidney was a little more finicky. We learned that it’s fairly common for a transplanted kidney to take some time to “wake up.” This condition is referred to as delayed graft function and affects 20-60% of kidneys transplanted from a deceased donor.[2] Fortunately, as is the case for the majority of “sleepy” kidneys, Becky’s kidney did wake up after a couple weeks. Milestone reached.
Combining her time in ICU prior to the transplant with some additional time after the transplant surgery, Becky spent about 6 total weeks in ICU. Why is that significant? Because, even a short stay in the ICU can lead to weeks or even months of recovery to regain strength and return to your former quality of life.[3] We thought we were nearing the finish line after receiving the transplant. We were not. That was just the first lap. Recovery is not just about regaining physical strength. Extended ICU times also affect cognitive skills, emotional state, sleeping patterns, and more. There were many laps still to go.
After a couple more weeks in the hospital, Becky was moving around well enough to move to an in-patient rehab facility just down the road. The transplant team continued to closely monitor her progress, and after less than three weeks in rehab, the therapists were saying Becky was ready to be discharged. I was not so sure. Becky was just barely getting up and moving around on her own, but here we were. Becky still had a feeding tube due to complications we hadn’t figured out yet. More on that later. We had orientation sessions to learn about all of Becky’s new medications (there were so, so many) and operation of the feeding pump. I felt like I was being trained to be a home healthcare worker. Well, I guess I was.
Before heading back to Georgetown, we spent a couple days in a Dallas hotel. The medical team wanted us to have a little more confidence that we could manage on our own without the security blanket of having 24-hour medical staff support. Things didn’t start out great. Becky had a fall in the hotel room that required a short trip to the Emergency Room to check the cut on her head. As disappointing as that was, it turned out to be nothing major. After getting a thumbs up from the transplant team, we headed home with a walker and wheelchair, and we had several other medical supplies waiting at home to assist with Becky’s limited mobility. Ready or not, another milestone reached.
Two months earlier, this felt like the milestone that we were aiming for. Now that we were here, it felt overwhelming. I have never considered myself a caregiver. I’m an engineer. They are not similar career paths. We had new challenges to overcome. I had ordered a shower chair, a raised toilet seat, a step and side rail for the bed, and support pillows to make it easier for Becky to get comfortable in bed. There were so many things to figure out. I had to learn how to set up Becky’s feeding tube and pump every night. I had to prepare her medications to be given through the feeding tube several times a day. There were trips to physical therapy. Oh, and I was also trying to squeeze in 40 hours of work each week since I had used up all my paid time off. There were definitely days I felt like we would need some home health care assistance to make it all work. Unfortunately, most home health care services cannot administer prescription medications, so we made it work.
Fortunately, it mostly went OK. We did have to make one trip to the local Emergency Room to get the feeding tube replaced when it had blocked. We also had to make a trip to an Emergency Clinic after our cat bit Becky’s finger and it became infected. What would usually be a minor event can be a lot more serious for a transplant recipient on immunosuppressant medications. One of the decisions we had to make was to accept a donated liver that was positive for Hepatitis-C. Fortunately, there are new medications which can completely eradicate the Hepatitis-C virus rather than simply treating it. We probably would not have agreed to this donor if these medications were not available. In fact, the team would not have even considered that donor without those medications being available.[4]
One of our biggest challenges was figuring out the source of Becky’s gastrointestinal problems. We made several trips to the Emergency Room because those issues were leading to dehydration and other complications. With a history of Irritable Bowel Syndrome and so many medications that could cause nausea, it continued to be a mystery. The doctors eventually figured out that Becky had a small bowel obstruction that required minor laparoscopic surgery to address. After this procedure, Becky’s stomach settled down considerably so she could finally eat solid foods and get rid of the feed tube. This was another important milestone.
We handled the challenges one at a time. We made regular trips back to Dallas so the medical team could check on Becky’s progress. There were times when Becky made comments like, “I don’t know if I can do this anymore.” Honestly, I had similar moments. It wasn’t easy. Getting a new liver was supposed to make everything better, but there were days it didn’t feel that way. In fact, some days it felt harder.
The road eventually started to smooth out. After months of unknowns and uncertainty, prayers had been answered. Becky had a new liver and a new kidney and was able to get back to some of her former daily activities. We even took a mini-vacation for our 40th wedding anniversary. Due to Becky’s medical issues and a move back to Texas from another state, it had been three years since we had taken any kind of vacation. We were able to spend three days viewing some of God’s natural wonders in the Colorado Springs area – from riding the Pike’s Peak Cog Railway[5] to hiking through Paint Mines Park[6]. Even though we weren’t always convinced it was going to happen, the doctors were right–it does get better.
A few months later Becky’s one-year transplantaversary would fall on Thanksgiving day. We had a lot to be thankful for. God had given Becky a second chance at life. We had a big family gathering to celebrate this major milestone. We finally felt like we could envision life getting back to normal. Our journey is certainly not over. Life as a transplant recipient has some new challenges. In fact, it will most likely be a lifetime journey at this point. Recovery is hard. At times it can be overwhelming. I can’t speak for everybody, but for us, it did eventually get better.
[1] https://beckysfightisourfight.blogspot.com/ [2] https://www.nhsbt.nhs.uk/organ-transplantation/kidney/benefits-and-risks-of-a-kidney-transplant/risks-of-a-kidney-transplant/delayed-graft-function/ [3] https://www.pennmedicine.org/for-patients-and-visitors/penn-medicine-locations/penn-presbyterian-medical-center/patient-and-visitor-information/medical-intensive-care-unit/life-after-the-icu [4] https://www.mayoclinic.org/medical-professionals/transplant-medicine/news/hepatitis-c-livers-now-usable-for-transplant-into-patients-uninfected-with-hepatitis-c/mac-20509828 [5] https://www.cograilway.com/ [6] https://communityservices.elpasoco.com/parks-and-recreation/paint-mines-interpretive-park/
Source: Bill Clark
