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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.

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  1. mevlan

    July 19, 2016 at 2:09 pm

    eyw abi sayenizde jp kasiyom devamm :D

  2. nkn

    June 14, 2016 at 7:00 pm

    Thank God (and President Obama) for the Affordable Care Act, which allows for some 20,000,000 Americans to be tested who never could have afforded it before. Say what you will (yes, single payer would have been better, but blame Congress for that) (yes, the price does keep climbing), it’s a better world than it was before ObamaCare!!!

    1. F Halbert

      July 25, 2016 at 11:00 am

      Spoken a s a true Democrat…this USA will not survive any more Obama/Clinton hijinks!

  3. Marilynn Thompson

    June 12, 2016 at 1:11 pm

    I never knew until now what the real name of this disease was called I lost 2 sisters to it I have routine testing done and so far I am testing negative for it

  4. Sandy son

    June 11, 2016 at 1:05 pm

    Thank you very much……with my RA My liver gets checked all the time…..but something new is always nice to know…….

    1. Theresa D Kesecker

      June 12, 2016 at 10:04 am

      I was diagnosed with PBC almost 2 years ago. I have multiple autoimmune diseases and thought I knew them all. Guess I didn’t. All the signs were there and no one picked up up on them until I was losing weight like crazy and not trying. When it was time for me to see my liver specialist because of autoimmune hepatitis, that is when it was is found. Those two diseases seem to go together. I literally went through hell to get that diagnosis on medication. My liver enzymes had been under control for a long time. Don’t wait for high liver enzymes.

  5. karen connelly

    June 11, 2016 at 3:14 am

    tyvm for the information it was very inlighting .

  6. karen connelly

    June 8, 2016 at 4:24 am

    tyvm keep up the good work .

  7. karen connelly

    June 8, 2016 at 2:06 am

    thanks for the information it was very informative .

  8. karen connelly

    June 4, 2016 at 11:47 pm

    very informative tyvm for this valuable information .

  9. Mary

    June 3, 2016 at 11:26 pm

    Thanks for this Article! Learn Something New!

  10. Ray Gumbo

    June 3, 2016 at 10:22 pm

    interesting read

  11. Virginia

    May 30, 2016 at 4:47 pm

    Interesting symptoms. Could be confused with several other problems.

  12. veronica lear

    May 13, 2016 at 1:19 am

    PBC sounds like something worth studying about

  13. Amanda Tempel

    April 2, 2016 at 2:56 am

    It’s actually something I hadn’t even heard of. I am really grateful for the post, so now I can spread the word, and know, for myself.

  14. Nancy at Whispered Inspirations

    April 1, 2016 at 9:03 am

    Thanks for such an educational post. I had no idea what it was, I’ve heard of auto-immune diseases before but, thanks for your perspective.

  15. Polarbelle

    April 1, 2016 at 1:16 am

    Very important information. Autoimmune diseases are scathing health stealers and often silent until it’s too late. I’m sorry for your loss.

  16. Stephanie of The TipToe Fairy

    March 31, 2016 at 3:37 pm

    This is so sad I have never heard of this disease before, but as a woman, I definitely want to be aware of it. I just had a check up and thankfully my liver functions were all ok.

  17. Jasmine Watts

    March 31, 2016 at 7:34 am

    I had never heard of PBC before but seems very important to know about. Thanks for sharing!!

  18. Susan Quackenbush

    March 31, 2016 at 3:01 am

    This is an incredibly touching and informative piece. I had never heard of PBC before but I will definitely be sure to get my regular screenings done! Thank you for sharing!

  19. jamie

    March 30, 2016 at 8:48 pm

    There are so many diseases that women are more prone to get than men, and sadly, women are often the ones to put themselves last when it comes to staying on top of our health. We have a hard time making time to go to the doctor when we do have symptoms. Throw something at us that’s silent and we’re fighting an uphill battle.

  20. michele d

    March 30, 2016 at 12:25 pm

    Never heard of this disease before now. I’ve heard others having problems with their liver but not this. Seems very important to know about. Thanks for sharing about it.

  21. Sarah Bailey

    March 30, 2016 at 12:02 pm

    I have to admit I’ve not heard of PBC what a scary thing to have been diagnosed with, thank you so much for raising awareness.

  22. Liz Mays

    March 30, 2016 at 9:25 am

    I really appreciate you spreading awareness on this. I had no idea it existed, and I’m glad to learn about it.

  23. Up Run For Life

    March 29, 2016 at 11:01 pm

    I’ve never heard of this autoimmune disease before tonight. I know that my rheumatologist does blood work every 6 to 12 months. I hope she is scanning for this disease.

  24. Chantal

    March 29, 2016 at 11:01 pm

    This is very interesting information, I didn’t know anything about PBC. Thank you for sharing this and spreading awareness,

  25. Brandy

    March 29, 2016 at 9:25 pm

    I had never heard of this before, glad you are educating others about it. I admire that you share your experience as a means to help us get educated, for those who had no clue what this was!

  26. Miles L.

    March 29, 2016 at 8:41 pm

    It’s always devastating to know if you have a life-threatening disease. Thanks for raising my awareness about PBC.

  27. Eloise

    March 29, 2016 at 4:25 pm

    thanks for sharing this personal story… I don’t have PBC, but I DO have a rare genetic liver disease that almost took my life, and some of the things are very similar. I can relate to this post!
    Life is so precious, we should be grateful every morning we wake up to another day!
    take care

  28. Heather

    March 29, 2016 at 1:51 pm

    I hadn’t heard of this disease before so thank you for sharing and spreading awareness. I am also very sorry for your loss.

  29. Pam

    March 29, 2016 at 12:41 pm

    It’s so important to get tested regularly for things like this. It’s scary how many illnesses don’t show symptoms until it is too late.

  30. Jenn @ EngineerMommy

    March 29, 2016 at 11:18 am

    I have never heard of this disease before, but I know people who have been affected by diseases of the liver. I will make sure to spread the word to my friends & family to get checked out for this disease.

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