Jackie C.

Autoimmune Hepatitis/Primary Biliary Cholangitis

I was officially with diagnosed Autoimmune Hepatitis – Primary Biliary Cholangitis Overlap Syndrome in 2011. However, for 10+ years my doctors were insisting I was being tested due to my extremely high enzyme levels when having my thyroid blood work done annually.

I was finally forced to face the facts that I was ill when my gallbladder had to be removed and the doctors noticed how damaged my liver was. I never drank so believed nothing bad will happen as long as I control my exercise and diet. I felt fine – other than fatigue all the time, but I have Hashimoto Disease. I thought it was no big deal, just suck it up and I refused to take medication.

Before I knew it, I was losing weight, couldn’t keep my eyes open, felt ill all the time. Again, forced to face the music, had emergency surgery and the reality of my disease kicked in. By now I was stage 3-4 cirrhosis, liver enzymes out of control and realized, after my doctor advised me, to sign the advanced directive and will probably have 5 years more with my liver.

I am now stage 4 cirrhosis, am dealing with the reality. I am forced to slow down, my joints hurt, legs swell, have the swollen spleen and varices which need constant maintenance. I am completely normal on the outside, but very sick on the inside which makes many unaware of what’s really going on.

My friends like to compare my illness to their sore joints, or sprained wrist, and thyroid issues that I don’t even discuss illness with them because to them I am fairly fit and look great (as they say). I’ve learned I will fight this disease tooth and nail, not let it affect me, keep exercising, teaching Jazzercise classes, show up to work everyday, put on my make-up and smile because God gave me another day.

I refuse to let the disease control me, and allow me to control it. We all face obstacles and we all need to learn how to get around those obstacles in our individual way.

Stay strong, though you will have days where you are feeling lost as the symptoms of the disease may seem overwhelming we are given a new day. Put your feet on the ground, be grateful for a new day and make the best of it. Have a strong support system, nothing is more important than having a circle to hold you up on bad days. Most importantly, listen to your doctor!! If you do not feel comfortable or confident, find one who you do have the confidence in.