Why Houston and not Dallas

I promised to explain how we ended up going to Houston and not Dallas for Roy’s care a few weeks ago, so this is that story.

Back in December 2018-January 2019 when Roy experienced the “Liver Incident 2.0” and it was determined to be a “drug-induced liver injury” (not illicit drugs, but antibiotics of all things) resulting in cirrhosis, he was referred within our home hospital system to Dallas. We had been to Dallas often during the 2004 Great Liver Incident, including the extensive transplant evaluation and ongoing observation of his condition, so we happily put our trust in the same team.

While recovering from his hospitalization, Roy got a new hepatologist in Dallas in February 2019; this doctor explained that Roy now only had one lobe of liver – a lobe was gone. The suggestion was made that Roy might need a weekly IV of albumin and lasix, but mostly they wanted him to lose weight, and kept talking about needing to do a biopsy. Neither the IVs nor the biopsy ever happened. Instead, Roy was monitored by his PCP every month and then every six weeks until he seemed improved enough to return to work.

This time around, maybe because they decided to treat it like cirrhosis and he wasn’t Homer Simpson yellow with jaundice, we only ever saw the new hepatologist in Dallas once, very briefly, and the ongoing monitoring was handed off to a nurse practitioner to happen every six months. We liked her a lot but there was not a lot of interest in determining why Roy was back in their care or how to prevent his liver from getting worse. The pattern became do some labs and an Ultrasound, drive to Dallas, see someone for 30 minutes, be told it is all about the same, schedule to come back, and drive back down I-45 with a stop at Chili’s for a black bean burger. The drive, parking and checking in took longer than the appointment. We played that game for more than a year.

Roy got a new PCP in 2021 because our old one retired. She noticed some ascites and ordered some labs. Roy had developed an umbilical hernia and she sent him to consult a surgeon; the surgeon said it would not be safe to intervene because of the ascites. In March 2022, we were told the hernia would only be fixed if/when he had a transplant. Soon thereafter in April 2022, we were fortunate enough to take a trip to visit our niece and nephew then living in Connecticut and New Jersey respectively. It was post-pandemic and we were excited to go, but Roy’s condition hindered our ability to enjoy the experience – he wasn’t really up for hiking, wandering around New York, or traversing stairs at the arboretum as he tired very easily. Any plans we had of traveling again appeared to be moot. (We did get to visit Mystic Pizza, Block Island, and get bagels in Brooklyn among other things.)

in September, Roy had a thoracentesis to drain ascites fluid from his lung cavity and in his next check-up in Dallas, they clocked that he was losing muscle mass, and yet the response was just eat more protein and come back in 3 months. We realized that while we could see Roy’s condition deteriorating, this frustrating cycle through Dallas could go on indefinitely with no change in his care, improvement in how he felt, or an understanding of how he got there, and he was not likely to be able to enjoy much if we didn’t get some better answers. The folks in Dallas were not terribly interested in finding the zebra and it seemed like at the very least it was time to seek another second opinion. If this truly was going to be his condition ad infinitum we needed to know. If it wasn’t, we needed some options. I started hunting for Roy’s original hepatologist.

Wondering why we wanted to go back to him? Well Dr. McFadden was extremely intrigued by Roy’s case in 2004. He asked a million questions and had great curiosity: had Roy ever had a tattoo? a piercing? Had he eaten these mushrooms? Had he traveled to this place? All the off-the-wall reasons that people see their biliary systems crash were explored, all while evaluating Roy for a transplant, and treating his symptoms to give him relief from the jaundice, itching, etc. Another bonus in our book was that Dr. McFadden always took my questions seriously to the point that he would ask what questions I brought at each appointment. Roy had last seen him at Santa Rosa in San Antonio in 2006. Was he still practicing? If so, was he in Texas? If not, where was he? And if he wasn’t, who would he recommend?

We found Dr. McFadden at Houston Methodist. He was taking new patients. They would accept our insurance. We got an appointment for November 2022 to get a second opinion on Roy’s situation. We were not sure he would remember Roy and his case after 20 years, but if he didn’t at that first appointment, he at least pretended that he did. He suggested that some of Roy’s medications be changed and decided that it would be useful to look at the immune system, sending Roy for some (twelve different) labs and an MRI to see what the liver looked like. Dr. McFadden remained curious – he stated it was an unusual case because there was not a clear cause for Roy’s situation. We went back again in December and in January 2023.

While Dallas termed Roy as having cirrhosis, Dr. McFadden preferred to say “chronic liver disease” because Roy was not in the norm. He decided to schedule a liver biopsy for February 2023. Roy’s labs in January had a high potassium level so he had to get that down first. He had a scary fall when at dinner at Napa Flats in mid-January and then when his labs showed the potassium was okay to proceed, Dr. McFadden asked him to come down to Methodist to get his sodium up before he could be biopsied. So in late January/early February, Roy spent a week in the hospital. He got to have not one, but two paracentesis, to remove liters of ascites fluid, an EKG with bubble test, and received a lot of albumin by IV before they gave him a trans-jugular liver biopsy. His MELD-Na while there was about 17 and they confirmed he had portal hypertension. He was sent home with a new set of medications to await the biopsy results and his MELD-Na came back down to around 10.

By mid-February 2023, Dr. McFadden had the results. Roy definitely now had cirrhosis but it also appeared that he had some red globules indicative of Alpha-1 in the samples and the suspected issue was potentially an anti-chymotripsone enzyme mutation. We don’t have children so it was not as critical to nail this down immediately. The genetic tests eventually indicated an Alpha-1 phenotype of MM and this genetic defect appeared to cause the cirrhosis. In March, Roy began to see a pulmonologist and had a thoracentesis to remove ascites fluid from his lung cavity again, but would be seen by Dr. McFadden every three-four months to monitor his condition which can only be solved with a transplant.

Roy continues to receive care from providers locally at Scott & White. He’s been followed closely by his PCP and by his pulmonologist. Unfortunately, we learned that liver deterioration often shows up as damage to the teeth, so Roy has had a lot of time in the dentist’s chair, too, and they’ve become experts on Alpha-1 too. He no longer drives because his muscles will cramp at odd times and fatigue washes over him which is not good when driving a manual. Roy’s built up his strength with physical therapy a few times and has had a regular cycle of chest X-rays, colonoscopy/endoscopy, ultrasounds, and labs. He has a squashed nerve in one leg (from the ascites), generally has little energy, and his sleep schedule has almost completely swapped so that he is now mostly nocturnal. Through 2023-2025, the rhythm became a 4-5 month loop through the Liver Center at Houston Methodist instead of through Dallas, but at least we now know the why, and somebody is actively interested in the progression of his care.

During Roy’s appointments, we have met a good number of younger physicians who are shadowing Dr. McFadden so we know he is teaching and we hope they are learning as much as they can. We know that Dr. McFadden may decide to retire, and while we hope that isn’t anytime soon, we are also confident that when he does, he will hand Roy off to someone that he trusts to continue Roy’s care. We are so glad that we found Dr. McFadden again. It doesn’t hurt that he also likes cats.

And so here we are in 2026, about to embark on a Transplant Evaluation at Houston Methodist. The very hospital where my dad used to be Director of Data Processing back when I was still excited for my sister and I to receive a Fisher Price Little People Holiday Inn for Christmas. I still remember going down into the beige-tiled hallways of the basement to entertain ourselves while he worked – the giant tape reels captured medical records around us, and we punched out messages on the punch card machine or drew on discarded sheets of the big green and white-striped dot-matrix printer paper. They’ve got a lot of newer machines and many more buildings full of experts at Houston Methodist now – we’re eager to see what they can tell us.