October 4, 2004. We would learn a lot on that day. We took the first of many trips to St. Louis to meet our “liver” doctor. Dr. Bruce Bacon was well-known, well-written and well-respected in his field. In fact, he successfully treated Naomi Judd’s liver/hepatitis, and when we met him, we knew that he would care for us as though we were family.
After giving Roger’s medical history, we asked questions, and he answered them. This is what we found out.
- Dr. Bacon suspected that Roger had cirrhosis. He would need a biopsy to confirm it. That would be done on October 11th.
- He was probably not a candidate for a liver transplant at that time.
- He took blood to see what Roger’s MELD score was.
At that time MELD meant little to us. We understood that it was a mathematical calculation of “number ratings” (bilirubin, creatinine, and INR) that would tell you when you need a liver. MELD stood for “Model End State Liver Disease.”
Dr. Bacon said 6-40 was the range.
- If you are 12-15, it’s time to get worked up to get on the transplant list.
- If you are 20-25 you are in need of a transplant.
- If you are 40 you are probably dead. (REMEMBER that number. You will see it again in later chapters.)
Roger’s MELD score? His guess was that is probably a 6 or 7.
- Dr. Bacon prescribed a beta blocker to reduce the chances of bleeding varices.
Bottom Line: He suspected that Roger’s condition was stable and compensated. He said that often the person with the cirrhosis outlives the doctor treating him!
- We asked if Roger should have the colectomy that some had suggested. He replied that it would be up to our GI doctor’s recommendation.
- He added (with a wink) that there was a paper being presented at an upcoming Liver Conference about the effects Viagra had on the large portal vein or varices in liver patients.
The next week we met with Dr. Bacon to get the results of the liver biopsy.
- The biopsy confirmed the diagnosis of PSC (Primary Sclerosing Cholangitis.)
- The small ducts were constricting and causing scarring in the bile ducts.
- There was no cirrhosis. His platelets were low. The blood work looked like cirrhosis, but it wasn’t. The liver was fine.
- Roger’s condition was very unusual. In the 2,000 patients Dr. Bacon saw every 2 months, only about 6 had what Roger had.
- His portal vein was not working right. It was not blocked–just constricted, and there was no fixing it. There was no reason for it not to be working right. It was just not allowing the blood to flow to the liver, and things backed up to the spleen.
- All of his blood work was normal. There were no viral or auto-immune problems.
- His platelets were well above the critical level.
- Portal hypertension usually lead to cirrhosis, but Roger’s liver was OK. It was just the plumbing that was bad.
- He advised us to watch the blood vessels to the esophagus (varices). They could rupture.
- He could “rubber band” them, but he prefered not. They recommend Nadalol as a beta blocker.
- We asked, “How will we know the beta blocker is working on the varices?” He answered, “You don’t–you just expect it to work.”
- He didn’t think there would be a problem with Roger’s spleen—unless he got punched there. (I made a mental note not to hit him there!)
Dr. Bacon said to come back in 6 months.
By May 2006 Roger was routinely getting colonoscopies. One of those showed little change; however, a flat polyp was taken and it showed pre-cancerous signs. It was called “low grade dysplasia.”
In mid-October 2010 Roger’s routine colonoscopy looked the same, except I remember the GI doctor looking straight at me as he said, “We need to talk about if and when we should band the varicies in the esophagus. They are starting to bulge.”
It was a Sunday morning. October 31, 2010. We were getting ready for church, me with my bag that had the songs and rehearsal CDs for the Christmas Program for Junior Church, and Roger with his Sunday School lesson and music for the main service.
Roger called for me from the kitchen. “Glenda. I’m throwing up. And this is what it looks like.” He showed me a small bowl of what looked like coffee grounds. I convinced him that we needed to go to the ER because dark vomit meant that something had been bleeding somewhere.
I called Carol. She and Gary met us at the ER so she could take the Christmas music to Jr. Church for rehearsal. Even then, four years before they became such a vital part of my life, they were willing to help when needed.
The doctor on call came in to talk with us and immediately said, “I need to band the varicies. The only way you can get out of this, Roger, is to refuse it. I’m an aggressive doctor. I do not want to wait and see. I treat all patients like family, and I would do this to my father. You could die if I don’t do this.”
After the procedure, the doctor explained some things for me.
- He put seven bands around the needed areas.
- He discussed the possibility of a liver transplant. All of the PSC, portal hypertension and other issues were because of Roger’s liver problems. The “coins were stacking, and you should be laying the groundwork for a transplant now rather than scrambling later. Start getting your ducks in a row.”
- Roger is at a greater risk of bile duct cancer.
- He saw blood in the stomach. After the procedure there was no active bleeding.
- He said that people die from what happened to Roger, and we were in the right place.
- Because Roger’s counts were chronically low, it was affecting everything else.
Roger spent the night in the ICU so he could be monitored.
We had survived one of those many scary moments that would occur during the next two years.
By the way
Life was more than liver issues.
- We became grandparents. Again. Chad and Stephanie added Madison in 2001 and Micah in 2003. Ava was born to Scott and Jess in March 2005 as they began their family. Grace was the “caboose” for Chad and Stephanie’s family when she was born in September 2005. Ava and Grace—they were sweet cousins and became great friends.
- Before Grace was born Stephanie shared that her ultrasound showed some areas of concern. The baby’s heart was abnormal-looking, and there could be a possibility she had that extra special chromosome. We all knew we would love that sweet baby Stephanie was carrying, but we felt extra relieved and blessed that there were no physical issues when Grace was born.
- In 2007 and 2009 Asher and Seth arrived to add to Scott and Jess’s quiver! Now there were seven grandchildren.
- Christmas celebrations came as our family grew.
- We celebrated Harristown Elementary School’s 50th anniversary in 2007 with a Jubilee event.
- There were church banquets, carnivals, picnics, and celebrations at Salem Baptist Church. Add a huge building program at Salem Baptist Church and Roger found himself very busy in his role of Assistant Pastor.
- We knew that people loved us. What else would forks in our front yard mean?
- I retired from my position as Principal at Harristown Elementary School in June of 2010. It was a strange feeling to look out my kitchen window and see the buses arrive that fall for school. I remember thinking throughout the days where each class was and when they had lunch and PE. Occasionally I smiled and thought, “Not my circus. Not my monkeys.” I missed the laughter, comradery, the kids, and the learning. Not so much the discipline issues or the drama with some parents!
Six years of living can’t be compressed into three or four paragraphs. But we did live. We lived with the Sword of Damocles hanging over our heads. We just didn’t know how low it would get in the next two years.