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Amy H.

Primary Biliary Cholangitis

Amy H - Faces of Liver DiseaseFifteen years ago I was diagnosed with a very rare chronic auto-immune disease called, Primary Biliary Cholangitis (PBC).

I was perfectly fine, or so I thought. I just couldn’t get pregnant (thought is was related to my “age”). After several labs and a biopsy, I was diagnosed with PBC.

I would soon learn that the disease causes progressive destruction of the livers bile ducts. Bile is the fluid produced in your liver that helps with digestion and to rid your body of cholesterol and toxins. When the bile ducts are damaged, the bile can back up and lead to irreversible scarring of your liver, known as cirrhosis. Basically, my body’s immune system is attacking my healthy cells and tissues. I would also learn that no one knows why you actually get this disease (my first doctor told me “bad luck”..I have since, switched doctors)..and there is no cure.

There are theories that it might be hereditary or come from an environmental toxin. Symptoms range from asymptomatic to extreme fatigue, intense itching (pruritus), joint pain and jaundice of the skin. For several years, I had no side effects (all good things must come to an end).

Pruritus and joint pain were my first symptoms, followed by charming things like hair loss and GI issues. You have to keep your humor about you! Many people have it worse that I do. Luckily, there is medication that can slow down the progression of the illness. In severe cases, a liver transplant is needed.

Needless to say, finding out I had this incurable disease was a hard pill to swallow (pun-intended). I lived a pretty darn healthy lifestyle, exercised, ate healthy, didn’t use drugs…and there I was with (after a liver biopsy) that confirmed I had this disease.

Like Kubler’s stages of grief, I experienced all of them…denial, anger, bargaining, depression and acceptance. Like a volleyball game, I bounced back and forth between the stages. Eventually I had to pull myself together because, hey I’m a therapist, I should be able to deal with this awful disease and the feelings associated with having it.

Like most people, I took to the internet…which is a blessing and a curse. There was a plethora of information out there, which can be overwhelming. Luckily, I found a good doctor (not the first one mentioned above) and an online PBC support group.

After the haze cleared, I decided that I was going to LIVE with this disease, not DIE from it. My journey through this disease would require a “wrap around” approach. Meaning, I would deal with not only the physical side of it, but also the emotional and spiritual side. I eat healthy, workout, take my meds, work, take care of son and my animals, volunteer (helping others makes me feel good) and just live my life.

Self-care is very important…it’s not selfish, it is self survival. Don’t be afraid to ask for help.


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