As I write this I see the covid numbers are rising again. I hear people in denial, it could never happen to them. Today I have something equally life threatening to write about. It is not about Covid. It’s about ANOTHER little recognized epidemic. I lived it. I will be very happy if this resonates with just one person.
Here’s my story.
Christmas Eve 2013, I was feeling pretty proud of myself. I was on my way to a healthier life. Earlier in the year I joined my local YMCA. I exercised 6 days a week. I was eating healthy and watching calories. All in an effort to lose weight. I had been overweight since I was a child. Smaller clothes was just a small part of why after 30 years I was losing weight. Feeling good was a great reason but what gave me real motivation was the fact I wanted to be a living kidney donor for a family member. I had lost 96 pounds in 7 months. Then I woke up with what I thought was the flu. By evening I thought I was doing better. When I got sick and vomited up a huge amount of red blood. I found myself in my local ER where I was literally bleeding to death with no clue why. I was taken to the back where I was still very much awake and scared to death.
They asked my history and I told them how great I had been doing losing weight.
They asked about my drinking history. I had none. I was never a drinker. My drug use. Again none. I still didn’t put things together. They asked me these questions more than once. It was only then it sunk in that they thought I was sick because I was in denial about drinking. I wasn’t. They called in a team to do an emergency procedure to stop my bleeding. Before they put me out they told me I had Cirrhosis. Ha! Talk about Denial why couldn’t they accept they were WRONG! No way I have never done anything to cause Cirrhosis.
I was admitted. Later that night I was finally asleep in my room. A doctor came in and again asked me about substance abuse. Then he told me I had end stage cirrhosis and would mostly die within two years. Within 24 hours I went from thinking I was doing great and helping to save someone I love to thinking my loved ones will soon lose me.
I learned a new word from my discharge papers. I was diagnosed with something called NASH. what in the world is that? I went to Dr. Google and found out it could easily be a death sentence and should be called what it really is Obesity Related Cirrhosis. I found out that I must’ve had fatty liver for years. Silently it turn to NASH (Nonalcoholic SteatoHepatitis) I felt like a fool. It was something I did! I wasn’t alone.
In the US over 80 million people have fatty liver disease. It’s not uncommon for your doctor to find it incidentally. During imaging for some other problem that is being addressed. Alcohol or drug use is only one way someone may gets cirrhosis. And by the way even social drinkers can develop Cirrhosis. Out of those with fatty liver, NAFLD, 20% will go on to get NASH.
The insidious thing about NASH is it May have little or no symptoms. I didn’t have any symptoms. I was feeling good until out out the blue I wasn’t . It was too late. I would need a liver transplant or die. Everyone needs a liver to live. They don’t have any treatment for a dying liver, that is Stage 4 cirrhosis, except to manage the symptoms until one of two things happens you either die or get a liver transplant. As I write this today, there are clinical trials going on looking for treatments for NASH. None yet have been approved for wide use by liver patients. Like diabetes, NAFLD / NASH are lifestyle diseases.
Of the reasons for liver transplant NASH is fast out pacing need for transplants because of alcohol and Hepatitis C. I often hear one of two diagnosis stories from cirrhosis patients. “ My Doctor told me years ago I had fatty liver. He said to lose weight. I didn’t take it seriously” Everyone knows how easy losing weight is. Then years later they are told their fatty liver has progressed to cirrhosis. Or like in my case It wasn’t found until end stage. I was told I would most likely die and should start thinking about taking care of what I needed to before the end. Transplant was my only option. Unfortunately many people die waiting. In the US out of the 13,000 patients a year waiting for a liver transplant about only 6,000 actually get one. When someone is sick with Liver Disease it’s not like one day they’re here and the next they’re not. Patients suffer with serious complications that often results in numerous hospital stays. Taking it’s toll on both patients, their loved ones and the healthcare system. Liver disease is a horrible way to die.
So I know what many of people reading this think this could never happen to you. Once upon a time I thought that. I know many people reading this will think this isn’t me. Sure I’m a little overweight but I’ll lose it. I have plenty of time to lose it. And like you I thought Cirrhosis would never be my diagnosis. I was like you. And sadly some of you know from experience about liver disease. You or someone you love are fighting this battle. Maybe even someone you know or love has lost their fight with liver disease. Here are just a few of the risk factors for having NAFLD/NASH.
If you have any of these risk factors for NAFLD/NASH disease. Please arm yourself with questions for your doctor. Get answers. Ask “how’s my liver?” They are there to help you. There’s no shame in asking for help. Make yourself heard. If you do have a problem don’t ignore it. Get help. Follow your doctors advice. If fatty liver is caught soon enough it can be reversed.
I am now 4 years post liver transplant and doing well. I will need meds for the rest of my life to maintain my health. I have personally known more than a few liver patients that have died from NASH.
Earlier I said I would be happy if just one person was reached by my story. I take that back. I make no apologies. Post transplant I’m more greedy than that. I want to reach EVERYONE! I want NAFLD/ NASH to be widely known. I want all people, patients, their loved ones, the medical community, and the people in charge of healthcare regulations and funding to sound the alarm! For the first time in history our life expectancy has declined, and liver diseases are a large reason for this. Most of the people dying from liver diseases are in their 40s and 50’s. There are also NAFLD/NASH patients in their teens. NAFLD/NASH needs to be a subject that is openly discussed. I long for the day when patients will go to their yearly check up and liver health will be part of the things routinely discussed.
Thank you for your time.
Love yourself. Love your Liver.