Primary Biliary Cholangitis… PBC… these three words have haunted me for almost 2 years now. These three little words have changed my life, and not for the better. Sadly, I must admit that even after almost 2 years diagnosed I still have very little understanding of this disease. I can tell you all about the effects on my body, mind and spirit but medically I still don’t have much of an understanding.
What I do know is that PBC affects the bile duct of the liver causing the bile to back up into the liver which causes scar tissue that eventually becomes cirrhosis of the liver. It certainly does not sound fun, and luckily I am not at that stage of this disease, or at least I don’t think that I am. Finding a hepatologist (liver specialist) has proven extremely difficult and I am still awaiting a referral. There is only 1 hepatologist within 100 miles of where I live, and I’ve been waiting over a year to see this particular specialist.
My immune system is attacking my liver, and no I did not do this to myself by drinking alcohol. In fact, the opposite is true. Mentally I am tired of explaining this part to people. The first assumption that they always have is that I must have been a drinker and therefore deserve this fate. Most of the time I just keep my diagnosis to myself so that I don’t have to explain it to yet another skeptic.
PBC has changed the way that I eat forever. My body no longer processes certain meats. If I eat pork, ground beef or any greasy food I get sick. It causes excruciating pain in my upper right quadrant that feels like someone is twisting a knife underneath my ribs. I can feel the pain all of the way into my back and my shoulder blade. It stops me from being able to breathe. Every single movement or step is unbearably painful. This affliction landed me in the hospital for 5 days last year!
When I was first diagnosed with this disease, I was told that I would need a liver transplant within 10 years. That thought was absolutely terrifying to me and I spent the next 18 months in a depression, waiting for death. I am so glad that I finally came out of that phase. It was a very scary place to be!
There is only one FDA approved medication for the treatment of PBC. That medication is called Ursodiol, or Urso for short. This is a very expensive medication, but it has helped. Only 67% of PBC patients respond to this medication, and luckily I am one of them. Within 1 month of starting this medication, my liver enzymes were back in the normal range. With that information, I was given between 20 and 40 years before transplant. As long as I keep taking it and keep responding so well to it, I will probably live a very long life and die with PBC rather than from PBC.
The ever-present threat of liver failure is always on my mind and at times I lose sleep stressing about my health. It’s a very dangerous catch 22 that I am in. My health makes me stress and stress adds to my bad health. It’s a vicious cycle and this year I have made more of a conscious effort to not let it all get to me.
It’s been difficult to find something to keep my mind busy, but I have started a few projects that are helping immensely. A new journaling project has become an amazing distraction, and who knows… maybe one day I’ll publish it as a book. I have also started crocheting. I had to watch YouTube videos to learn how, but I am well on my way now. I spend a lot of time with my kids, treasuring every moment because mine are limited by this disease. So go home and hug your family, treasure every second because you never know what fate is in store for you.