Living with PBC – The Patient Perspective
This is a sponsored post to share my personal story on how PBC (Primary Biliary Cholangitis) had affected our family and how you can discover this disease early on.
“Today’s post is a part of the Insider’s Program on Bloggy Moms. All opinions are my own.”
Today I want to talk to you about primary biliary cholangitis, formerly known as primary biliary cirrhosis (PBC). For those of you who don’t know what PBC is, let me give you a little information. The reason I’m aware of this chronic liver disease is not because I have it but because we recently lost a family member who had PBC. By the time she was diagnosed, the disease had progressed to the point that she didn’t want treatment for it. She was a healthy individual or she thought, so she didn’t go in for routine testing which could have helped her physician discover this disease early on. Friends, I encourage you to have regular physicals and blood testing. Those with PBC could be symptom-free for years without knowing anything is wrong. If you don’t want to do it for yourself, do it for your family and friends who want to keep you around for a long time to come.
My SIL was advised that she was going to have to change some things in her life to help her relieve some of the symptoms of her disease, such as reducing her sodium. This was hard for her because she loved her food salty. More so than anyone I’ve ever met. And she didn’t much care for healthy foods either. If she had a choice between fresh fruits & vegetables or a bag of chips, the chips won every time. I don’t think she ever did restrict herself to a low sodium diet. She did start taking more calcium and Vitamin D supplements and she also increased her water intake. She’s never had an alcoholic drink in her life so avoiding alcohol was one of the easiest of the things she had to change. She didn’t start exercising as suggested although everyone offered to walk with her. She could be stubborn like that. There were a few more things on the list that her doctor gave her that she also chose not to do. Keep in mind that these are not the only ways to manage PBC, your physician will discuss your options with you. I just wanted you to know that there are symptom relief options.
For some reason, more women get PBC than men do. The percentage is 90% women and 10% men. If you’re wondering what the age range is for getting PBC, I’ve researched that for you and it’s aged 35 to 60. I have read that some women younger than 25 have been diagnosed with PBC but the average is 35 to 60 years of age. Knowing this, if you are in that age range, have yourself checked right away. Ask your physician about the blood test or tests needed that will help him or her determine if you may have PBC. The earlier it’s detected, the better the outcome may be.
Many people live for years after being diagnosed with PBC by taking care of themselves and by taking the treatment needed to slow down the progression of the disease. Since this is a slowly progressing disease, some patients may even live for many years with PBC by following their doctor’s advice and taking care of themselves. PBC is a cruel disease of the liver that slowly destroys your medium-sized bile ducts. These bile ducts are located in the liver and are needed because bile (digestive liquid) travels through the bile ducts to your small intestine (my anatomy courses are kicking in right now). Bile is, of course, a digestive liquid made for the liver to travel to our small intestines where if working correctly, will help digest fats and fatty vitamins.
Since 1998, PBC has been the second leading overall cause of women having liver transplants in the US (1 in 1,000 women over 40 are affected by PBC). Can you guess what the first cause is? If you said hepatitis C, you are correct, but that’s a whole other post at a different time. Today, I only want PBC on your mind. Before you go to do your own research of this disease, allow me one more minute of your time while you check out this content capsule because it could help make you more aware of PBC and its symptoms. Also, I wanted to share some stories from real people who wanted you to know what it’s like to live with PBC.