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Every patient journey is unique.
“Liver cirrhosis? Me? But I really don’t drink much. Non-alcoholic fatty liver disease (NAFLD)? What’s that?”
Those were the thoughts that went through my mind on January 27, 2021, as I laid in a hospital bed, while my general gastroenterologist explained the preliminary findings of the tests I recently had. That morning, at age 36, life as I knew it changed completely. She explained that fat trapped in my liver might be causing scarring. The doctor’s explanation of this disease was concise and simple. Still, that day marked a clear divide in my life: before and after becoming a liver disease patient. Did you know that they can weigh you from a hospital bed? Me either. But that day, in that bed, I weighed about 310 lbs.
NOTE: There’s a new name for NAFLD and the second phase of the disease, Non-Alcoholic Steatohepatitis (NASH). It is now called Metabolic dysfunction-associated steatotic liver disease/MetALD- a subcategory of MASLD, which describes patients who consume moderate amounts of alcohol (140-350 g/week for females and 210-420 g/week for males), which may be a contributing factor to their case /Metabolic dysfunction-associated steatohepatitis. Because of this change, when referencing the disease, I’ll be using the new abbreviations (MASLD/MetALD/MASH) from this point forward.
The doctor’s update was shocking. How could I be sick when I didn’t feel sick? You might be wondering why I was in the hospital and what caused me to suspect something could be wrong. The reason was swollen legs and ankles. I first noticed it in December 2020, but I didn’t think much of it because it was something I had experienced before, and it normally went away after a few days. The exceptions being this time, and one period of about 10 months in 2007, when I had a similar issue, which caused a moonface-like appearance in my face, as well as fluid buildup in my legs and ankles. Back then, I also had intense nausea, and several tests were run but no significant diagnosis was made.
Reflecting on 2007, I think most gastroenterologists wouldn't have considered liver disease in a 23-year-old who rarely drank alcohol. Interestingly though, in January 2021, when my general gastroenterologist was reviewing my health records, she saw a very small irregularity on a CT scan from 2007, which back then was simply thought to be a machine error. However, this could have been the start of fibrosis.
In mid-January 2021, I visited my primary care provider (PCP) for my swollen legs and ankles, and she was alarmed. My PCP ordered lab work, but scheduling delays pushed it back a few days. When the results arrived, my PCP suggested an emergency room visit due to my liver numbers being far out of alignment. This led to extensive tests, including an abdominal ultrasound and CT scan, and an overnight stay during the COVID-19 peak.
Before learning I possibly had liver cirrhosis and MASLD/MASH, I thought being alone in the hospital, without being able to have any family with me due to COVID restrictions, would be the scariest part of this visit. Particularly, because I had never stayed in the hospital before.
In the months that followed, my general gastroenterologist referred me to my first hepatologist, I underwent various medical tests, and received a definitive diagnosis of MASLD/MASH with liver cirrhosis. Initially, my hepatologist recommended the Mediterranean Diet and exercise and to lose 10% of my body weight. At the beginning, there was some suspicion that this may be at least partly caused by autoimmune disease, but the initial pathology report came back negative.
By April 2021, I had met the weight loss goal, and my numbers remained nearly the same. I had also received the COVID vaccine about 2 weeks prior to my labs. I’m not a patient who shies away from asking questions. So, I asked if maybe my vaccine could have affected my results, and the doctor said it was possible, and I may be better off seeing a colleague of his who specialized in autoimmune liver disease.
As a patient, I had a gut feeling that more was at play. In addition to that feeling I also had a ton of questions about the diet. I researched online and discovered a liver clinic in Chicago at the hospital my first hepatologist was affiliated with. Their resources, including dietitians, appealed to me, and it turned out that the director of that clinic, Dr. Mary Rinella, who specialized in MASLD/MASH and autoimmune liver diseases, was also the colleague that my first hepatologist wanted to refer me to. I believe everything happens for a reason. Dr. Rinella is everything I was looking for in a doctor and under her care my numbers and overall condition have improved drastically.
Prior to seeing Dr. Rinella, when I received my MASLD and cirrhosis diagnoses, I initially grappled with sadness and anger. I spent 3 days in bed, crying. Gradually, with my family's support, I began to accept my condition. At first, I struggled to make changes, but my mom stepped in by preparing healthy meals and encouraging daily walks. While my new year’s resolution for 2021 was to exercise and lose weight, which I had decided in late November 2020, I felt like I’d lost my autonomy in that choice, and that made me not really want to do it.
What I did want was to live a long life. I knew that meant now that I had this diagnosis it was time to get things together. Still, it was difficult to process the emotions I felt. Life, however, has a way of forcing a course correction when needed. About 3 weeks after my emergency room visit, my cousin, who is very athletic, was standing outside of a gas station in New Orleans when he was hit by a car driven by an intoxicated driver, and pinned to the side of the building, resulting in bilateral amputation of his legs. Suddenly, my anger for not wanting to exercise turned to guilt. I’m sure that he would give anything to get his legs back and to be able to just go for a simple walk. He became one of my primary inspirations. I would walk my neighborhood with my earbuds shoved in my ears, heavy metal music blaring, and my biggest, darkest pair of sunglasses on to hide the anger, tears, or whatever emotion I happened to be feeling that day.
I began seeing Dr. Rinella in June 2021, and by that point, I still didn’t love exercising, but I had started to see results from my efforts, and I didn’t hate it anymore either. I had lost about 40 lbs. by then.
When I visited Dr. Rinella for the first time, I felt like we really clicked, and that she was the right doctor for me. She listened to my concerns, and somehow knew all the answers to my questions before I even knew to ask them. At age 36, I was younger than the average liver disease patient by about 30 years, and I couldn’t accept that the only solution was diet and exercise, and hope for the best.
Dr. Rinella listened to me from day one. During our first visit, we talked about the possibility of autoimmune liver disease. I mentioned my gut feeling. She looked at my liver biopsy slides and said she believed that there was a distinct possibility there could be an autoimmune disease link, pointing out the microscopic pink flecks that were present on the slide samples from my liver biopsy. She also stated that she wanted the UChicago Medicine pathologist to look at my slides.
Dr. Rinella has been my unwavering guide through my medical journey. She has identified MASLD/MASH, overlapping markers for autoimmune hepatitis, and primary biliary cholangitis. She’s explored various medications for me, most being successful. She has shared her wealth of knowledge, warmth, and compassionate support, as we’ve worked to find what my body responds best to. She also helps me to make sure any medication that I need to take, such as an antibiotic when I am sick, or for seemingly minor things like headaches, is safe for my liver. Her care is the litmus test by which I choose all my other doctors and the standard of care that I hold them to.
Dr. Rinella has also worked with me to explain test results… and there have been several. Since January 2022, when we moved to UChicago medicine, I’ve had 1 liver biopsy, 2 annual EGD/ERCPs, 5 MRI/MRCPs (we were doing them every six months, but in February 2023, a lesion appeared so there have been a few additional. Thankfully, that lesion has remained stable since first appearing, and does not appear suspect for hepatocellular carcinoma) and many blood tests and lab work sessions.
As the director of the Metabolic and Fatty Liver Clinic at UChicago Medicine, she has provided access to the best dietitians, who have been central to my success as well. Especially Sarah, my current dietitian, who is overflowing with knowledge and positivity. In addition to being a highly knowledgeable dietitian, she is a great cheerleader.
In fact, that level of positivity and excellence is the common thread that connects everyone throughout the clinic and has been beyond helpful for me as a patient. This is especially true for Dr. Rinella‘s nurse, Alicia, who is attentive and kind.
Today, while I do have a monitored lesion, my health has significantly improved. I weigh 198 lbs., and no longer have fat in my liver. I enjoy exercise for physical and mental well-being. My journey has been possible thanks to my support system, my dedicated medical team, and the spark I’ve found within me, which sometimes flickers, but I refuse to let go out. I am successful because I have put in the work, time, and have chosen success as my priority.
Success looks different every day and does not mean perfection. I am disciplined about my diet but, occasionally, I still eat a cookie or piece of candy. It’s a lot less though, and I have come to find that sweets and heavily processed foods are not as enticing as they used to be. I think of food as fuel and/or medicine and enjoy some vegetables now. I pay attention to what I put in my body and what I do with It. When I have the choice of doing something, like taking the elevator or the stairs, I often choose the stairs. I walk for exercise as often as I can, and often park a little farther away to get a few extra steps in. It takes discipline and sometimes forced motivation, but as someone who I consider to be a mentor has often told me, most things that are worth doing in life are not easy.
Two years ago I went to Six Flags with my husband, Ryan. I climbed onto a rollercoaster and I couldn’t close the seatbelt. I was mortified. I have never been so humiliated, and I have never felt more terrible about myself than I did in that moment. That was a life-altering moment for me. I’m 5’2” and I weighed 256lbs. That’s a lot of weight for someone with my frame. Soon after the rollercoaster incident I started on my journey towards health. I wanted to be healthy for my kids, for Ryan and for myself. They deserved the best version of me, and at the time I was so far away from being able to give that to them. My cup was empty.
I had Roux-en-y Gastric Bypass surgery over 2 years ago. Since my weight loss journey began, I’ve lost 130lbs (40lbs pre-op and 90lbs post-op). As of today, I weigh 125lbs! I have lost more than half of my body weight and I’ve been maintaining within a 10lb fluctuation for a year and a half. To qualify for surgery, I had a 6-month approval process which included two 3-hour classes, many blood tests, many appointments with a dietician, evaluation by a psychologist, an upper GI, an abdominal ultrasound, an EKG and echocardiogram, along with a full physical and a sleep study (not to mention the 2-week liquid diet, painful surgery, recovery, extremely strict pre/post-operative diet and lifelong vitamin regimen). Bariatric surgery is a tool, not a fix all. It’s not cosmetic, and it’s not plastic surgery.
If your insurance covers the cost, it’s because they’ve deemed it a medical necessity. It’s not a diet, it’s a lifelong commitment to a healthier lifestyle. WLS is the furthest thing from the easy way out; it was the hardest (and continues to be the hardest) thing I’ve ever done. WLS not only helped me lose weight (and finally quit smoking, thank god, because who wants ulcers?), but it helped me regain my health, time with my kids, my confidence and my life. I have more energy, I’m more active, and I’m setting a good example for my littles. Miraculously, I now treat myself with the love and respect that I never knew I have always deserved.
Since the late 1980s I had been seeing my general practitioner on a regular basis for type 2 diabetes. In 2005, after running a liver panel of bloodwork, he informed me that I had a fatty liver. I had never heard of the condition before but it didn’t seem particularly worrisome. He said I should lose some weight but otherwise didn’t make a big deal of it. I walked out of his office that day still concerned about my diabetes but not thinking much of the fatty liver diagnosis. I was overweight, so why shouldn’t my liver also be a little fatty.
I continued to see the same doctor over the ensuing nine years. Sometimes he mentioned the fatty liver and sometimes he didn’t. In 2014 he asked me to do an ultrasound along with my usual bloodwork. After getting the results, he called and told me I had nonalcoholic steatohepatitis (NASH) and possibly even cirrhosis. How could I have cirrhosis? Isn’t that a drinkers’ disease? As virtually a non-drinker, I never knew I was at risk for cirrhosis until the day I received that diagnosis.
At that point I was referred to a hepatologist to seek further treatment. She confirmed the cirrhosis diagnosis and encouraged me to lose weight. It is worth mentioning that I was experiencing no symptoms and I felt fine.
I did pay lose some weight but it was too late. My MELD (Model for End Stage Liver Disease) continued to creep up and there was some talk of a transplant being in my future. I was not very receptive to the idea of a transplant and being the optimist that I am I was certain I would beat this disease. I still had no symptoms.
I continued with my diabetes medication (Metformin) and received periodic MRIs. In early 2017, I was told I had a cancerous tumor on my liver. Now I was worried. The oncologist recommended that I get on the transplant waiting list and also undergo Stereotactic Body Radiation Therapy (SBRT). The purpose of the SBRT was to stop the growth of the tumor and serve as a “bridge” to transplant. SBRT required five does of radiation over a 10-day period. After six months I would be reevaluated to see if the therapy had worked. He also told me that given the condition of my liver, I would probably start to notice symptoms (I was still asymptomatic at that point) and my liver could rapidly deteriorate.
After completing all the necessary tests, I was placed on the transplant list in June 2017. I learned that my MELD score would determine my priority on that list and that a transplant was not on the immediate horizon. After six months, though, I would receive “exception points” due to my cancer that would elevate me on the list.
That summer I began experiencing symptoms for the first time. Mostly, I was tired and my appetite began to be affected. The doctor recommended that I be careful with any travel and not to venture far from a hospital with transplant capabilities.
I was still feeling relatively healthy until October of that year. I woke up one morning and I didn’t know where I was. My wife was out at the time and she returned home to find me in a confused state. She thought I was dehydrated. I was not being very cooperative so finally, she called 911 and I was taken in an ambulance to the hospital. We learned that I had Hepatic Encephalopathy (HE). Ammonia was in my blood and made its way to my brain. I should point out that I don’t remember any of this; there’s a 12-hour gap in my memory that never returned. I was in the hospital for five days and from that point forward my brain was foggy. I was no longer able to drive and could not maintain concentration long enough to read a book. My wife asked the doctor if I would recover from this and they weren’t sure.
Over the next couple of months, I had a few less serious bouts of HE, but we finally came to realize the dietary changes we needed to make to avoid it. The brain fog was a constant in my life, though, placing a great burden on my wife as my caregiver.
In the interim I learned that SBRT treatments had been successful. A day after learning that, I got another call from the oncologist telling me there was another tumor and I would have to repeat the procedure. Another surprise a couple days later. We’re not going to repeat the procedure they said, because there is too little “good liver” left and the procedure would be too dangerous.
In mid-December I received my “exception points” and knew that a transplant was getting closer. It took until March 2018, though, before I received the transplant. That three month wait was a difficult time period from an emotional standpoint. So many ups and downs. One day I’d be sure I was not going to liver long enough to get the transplant; the next day I’d be planning a vacation to be taken after the transplant.
The transplant was successful and I was only in the hospital for eight days. Life after transplant is good, but the anti-rejection medications that I will be taking the rest of my life bring their own issues. The transplant was not a “get out of jail free card.” Those medications have results in my having to take daily insulin shots for the first time in my life and I have lost more than 50% of my kidney function. There is no free lunch.
My experience led me to form NASH kNOWledge (www.nash-now.org), a non-profit with a mission of increasing awareness of nonalcoholic fatty liver disease. Our goal in forming the nonprofit was to prevent others from following my path on the road to a transplant. We began developing educational materials I wish I had been given on the day I was diagnosed with a fatty liver and also produced a documentary (“Silent Epidemic: the liver disease NASH”) that was intended to be a cautionary tale. Almost three years later, we continue with our work with a special focus on making disease prevention a family issue.