Cirrhosis Survivor: Battling Stigma and Finding Hope

Hi, my name is Keith and I am a cirrhosis patient. That is the thought that runs through my head, each and every day. From the outside, I seem as normal as any other person. Pass me on the street and you will see an older male with silver hair and a beard, a few tattoos, and piercings. I tend to blend into my surroundings. I carry a secret that few know about, mainly due to the stigma it comes from the disease I have. And as much as I would love to just forget about this disease, I cannot. I have to be vigilant and focused just to stay healthy. Some days are very hard and a few are less so.

When people think of cirrhosis, most picture some drunk that spends more time at a bar or drinking than anything else. An image comes to mind based on what you were taught about the disease in health classes. What most dont contemplate is the toll it takes on your mental well being and your very soul. Today, I want to share a little about my dealing with things in an article called…Cirrhosis Survivor: Battling Stigma and Finding Hope.

In the beginning

Some days, I cannot believe that it has been three years and three months since I found out that I had cirrhosis. Then there are the days that it feels like the first day I found out, the struggling with the dark thoughts I now have added to my stressors, the focus on routines, and fear that at any point, something may happen and my health takes a tragic turn for the worse. A bit dramatic maybe, but not far off from the actual truth. 

Three years ago, I was a different person, all together. December 24th, 2020 was the first time that I had been to a doctor since before I went to college. (For perspective, I started college in September of 1992) I weighed in at 300 pounds, had high blood pressure, my heart rate was around 115 resting, I didn’t pay much attention to my diet, and walking from the parking lot to my office felt like I had ran three miles. I was in rough shape.

Due to some anomalies in my blood work, I was sent to a liver specialist for a follow up. I met my doctor and she advised me of the next steps. There were more tests, fibroscans, ultrasounds, and samples to be taken. I was then diagnosed with cirrhosis. Due to high blood pressure, i had already started changing my diet. I had opted for a Mediterranean diet to lower sodium. Once I found out about cirrhosis and what I needed to do immediately, i opted to become an ovo-lacto vegetarian. I also started a pretty intense workout plan. I was doing cardio and strength training six days a week. 

Today, I am 200lbs, in some of the best shape of my life and my doctor cannot believe how good my bloodwork is. I have almost no bad cholesterol and, for the most part, my liver and bloodwork is closer to someone who doesnt have cirrhosis. That being said, my MELD score is a 7. So, I do need to be mindful of staying on my regimen.

This is the way

Every day is a focus on the plan. I have to make sure I am eating the right things. That includes getting enough protein and carbohydrates to keep my body healthy and not digesting itself. I have to focus on medications and what I can take, or the lack thereof. And everyday is either doing cardio or strength training. All of this is just the tip of trying to stay ahead of this disease. 

My diet has drastically changed. I opt for eating whole foods over processed foods, this is to ensure that I minimize the bad stuff going into my body. We meal prep each Sunday, for the week. Each meal is thought out based on adequate protein and carbs and we try to do, at least,  two separate dishes so that we can mix it up during the week. I usually opt for 30 – 40 grams of protein per meal and try to eat five small meals each day. 

When it comes to medication, I do not take anything that has not been prescribed to me. I stopped taking almost all forms of medication. Even if I am having a serious day of arthritis, at most I take two Tylenol – only two pills. And it is rare that I take the more than once every couple of months. I have two medications I am on, one is for controlling acid reflux and the other is a cholesterol drug that has been clinically shown to reduce the chances of liver cancer. The only other things I take are two supplements, approved by my doctor. One is Vitamin B-12 and the other is vitamin D. It has also been three years and three months since I stopped drinking.

My workout routine is considered by some, a bit much. I run, at minimum, three days a week and each day is five miles. I do strength training and walking two days of the week. I walk 4.5 miles on those days and do about 45 minutes of weight lifting. Nothing that will make me like a bodybuilder, but enough to keep toned. That tallies out to 15 miles of running a week, 9 miles of walking and an hour and a half of weight lifting. My workouts take priority over most everything else, I plan around them. It can be a lot to have to deal with, that is for sure.

New lease on life

When I was diagnosed in 2021, I was told that life expectancy is around 12 – 15 years. I have compensated cirrhosis, which in layman’s terms means that I have acute symptoms. I have not developed jaundice or ascetics and for the most part, I look healthy. But that doesnt change the fact that my expectancy has been greatly reduced by this disease. 

Having this disease stays the focus of my mind, almost every day. I am always looking for a way to do things better and increase my chances. After the first year of my diagnosis, I stopped focusing on the whys of me getting this disease and decided to focus on getting as much out of life, as I can, while I can.

It can be a lot, at times. Death often fills my mind more than positivity. Dying from cirrhosis is a horrible way to go, well dying from any disease is rarely pretty. Havent watched my first boyfriend die of complications due to HIV, I can say I have seen how ugly death can be and It hurts knowing that the ones I love will have to witness those days.  My hypervigilance is more for preventing that inevitable. There is a part of me that hopes I can find some magi combination of things that will reverse my prognosis so that my loved ones wont have to watch me die before them.

There was a time when I believed that I was ready to die. Today, I can say with certainty that I am not ready to give up just yet, but I have lived a good life all the same. Each day, I wake up next to my partner and find another reason to fight more and not give up. Each new experience we face, together, is one more point in the victory column. Sure, cirrhosis is a rough disease and is a death sentence, but how you face it is your own choice.

Fighting for the future

At present, there is no cure for cirrhosis. There are studies happening that have a lot of positive and hopeful findings. It is also a disease that doctors do not know a lot about. Gone are the days of only alcoholics geting cirrhosis. It is the 12th leading cause of death in the United States and it is on the rise. There are no hard and fast rules for what works best to increase the chances of survival and there is no magic formula to cure it. Its effects are far ranging from being bedridden and losing memory function to very mild symptoms. But each of those conditions are real people, real people who are scared and looking for answers. I am one of those people and thank you for allowing me to share a bit about my condition and how it affects me. 

Have you known someone tha has been diagnosed or died from cirrhosis? Maybe that person is you. What were your thoughts when you found out and did they change as you learned more? Let me know in the comments below. Thank you again for allowing me time to share a bit about my struggles with cirrhosis.