How do patients feel and what is their outlook?
Today, I am alive and grateful. I was diagnosed in 2009 with Stage 4 NASH with Cirrhosis. After having a liver biopsy in early 2011, I was referred to (name deleted) Medical Center in (U.S. state).
My first visit with my Hepatologist is one I nor my wife will ever forget. He had viewed all of my tests and gave me the news that I only had 2-3 years to live without a liver transplant. I needed to lose over 200 lbs to even qualify for a transplant and he didn’t think I would live long enough to lose enough weight. We left there with an appointment to return in two weeks to give me time to see if I even wanted to try losing weight or just let nature take its course. We were devastated of course. We came home and had a family meeting where we told our sons and daughters in law that I was making the choice not to seek further treatment.
On my return visit the Doctor comes in and straight asks me if I was ready to die. With that he brings in a NP/ Dietician who became our best friend. She worked so hard to help me find foods I liked and could eat within my 1800 calorie eating plan. She availed herself to us to be reached by phone or text.
I started my new eating plan without exercising and I was losing weight and muscle mass. After losing the first 50lbs, I began walking with my grandson and our little dog. We were walking 2-3 miles when my grandson would tell me he was getting tired. But when I would get tired, he would say, “Come on Poppy, you can go further!” He wouldn’t allow me to quit or miss even one day unless I was sick. But 3 miles was too far for a 6 year old.
I eventually joined the YMCA where I could use a treadmill and use weight lifting machines to help me build my muscle. It worked and in three years I lost over 210lbs. Weighing in at my lowest weight since high school at 198lbs. My own family members didn’t recognize me when they saw me and so it went for all my doctors.
In conclusion, I have had many ups and downs over the years fighting this disease. I have had episodes of mild Hepatic Encephalopathy. I take two different medications to help with that now. I had thyroid cancer in 2016 and had to complete radiation therapy. Then seven months later I was diagnosed with moderate to severe Crohn’s Disease which will be an ongoing struggle forever unless a cure is found.
So friends, my story tells you, I hope, that you should never give up even on your darkest day. I wake up daily with a truly grateful heart and a smile.