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Every patient journey is unique.
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.