Ryan's Story: Hepatic Encephalopathy

My name is Ryan MacKissock. I am a three-time solid organ transplant recipient. My first transplant was an isolated small bowel transplant in February 2012. My transplant rejected in March 2013 and subsequently explanted in May 2013. My second transplant was an isolated small bowel transplant in November 2015. In early 2016 I developed end stage kidney failure and was placed on dialysis and the kidney transplant list in April 2016. I remained on dialysis until my third transplant, an isolated kidney transplant in June 2019.

I was born with a volvulus in my small bowel at birth. I spent the first 7 months of my life inpatient, mostly in ICU. Over the course of my life I started to get complications from malabsorption and obstruction ranging from vomiting to electrotype abnormality complications. I graduated high school, college, graduate school, and worked for many years until my complications and conditions caused me to seek help. I first went to the University of Pittsburgh Medical Center in 2011 and had an exploratory surgery that lasted over 8 hours. After surgery I lost my motility and needed a small bowel transplant.

Prior to 2012 I was on Total Parental Nutrition (TPN) for about 11 years. I continued with TPN until after my transplant in February 2012. I lost my first transplant to rejection and the Epstein-Barr virus. I went back on TPN 24 hours a day 7 days a week until I was transplanted in November 2015. During my hospitalization for my second transplant I successfully fought off acute rejection. Unfortunately, the doctors diagnosed acute kidney failure due to long term steroid and antirejection use. I went on dialysis by the end of 2015 and stayed on dialysis 3 times a week until June 2019 when I was given an amazing gift from my fiancé who donated her kidney.

Hepatic Encephalopathy is an altered sense of consciousness because of acute or chronic liver failure. I chose this topic because I have been dealing with this condition for several years. I first experienced hepatic encephalopathy during an extended period on hemodialysis. I subsequently was experiencing chronic liver failure. Hepatic encephalopathy occurs when the liver is unable to properly function raising the ammonia levels in the blood. Hepatic encephalopathy can be a result of infection, gastrointestinal bleeding, and electrolyte irregularities. High ammonia levels in the blood cause patients to have mood changes, temporary memory loss and in extreme cases, coma.

My journey from onset to treatment has been an ongoing journey. I first experienced symptoms during a dialysis session. The first symptoms are often hard to detect. I got agitated and defensive. I started to lose concept of time and where I was. I ended up being sent to the Intensive Care Unit from my dialysis center. My family was called as the doctors had a hard time diagnosing my symptoms. The emergency room doctors asked my family if I had these symptoms before. I had not. The emergency doctors called my transplant team at the Cleveland Clinic. Doctor Kareem said it was most likely high ammonia in my blood. I was treated with lactulose to decrease the ammonia level. I started feeling better later that day. I was prescribed oral doses of the antibiotic Rifaximin, frequently called Xifaxin, twice daily as a maintenance dose to keep my levels of ammonia from reaching toxic levels.

The advice I would give other transplant and other digestive disease patients is to be aware of this condition if you have acute or chronic liver and/or kidney failure. Get your ammonia levels checked monthly to make sure the levels remain at acceptable levels. The problem with not monitoring your ammonia levels is that hepatic encephalopathy can vary from person to person. The higher the ammonia level does not correlate perfectly with symptoms. Patients with symptoms are too impaired to notice they are experiencing hepatic encephalopathy.

Patients should contact their transplant team with questions or concerns. Transplant patients and other digestive disease patients are a complicated group. Hepatic Encephalopathy is a serious condition that can ultimately cause life-altering outcomes.

Please note: Since the writing of this story, Ryan has gained his transplant warrior wings, but his tenacity and positive outlook on life lives on.