Primary Biliary Cholangitis Patient and the LiveHer Project [transcript] [audio]

Guest: Debbie Parsley

Presenter: Neal Howard

Guest Bio: Debbie Parsley, who works for the state as a fingerprint supervisor, was diagnosed with a rare autoimmune liver disease called Primary Biliary Cholangitis (PBC) at age 53 after routine bloodwork planning for her retirement. PBC affects approximately one in 1000 women over the age of 40 and the majority of people does not experience any symptoms. Learn more at: www.Facebook.com/LiveHerPBC.

Segment Overview: Debbie Parsley, 61, talks about her diagnosis of Primary Biliary Cholangitis (PBC), a rare, serious and less-known liver disease that affects some women who are often in the prime of their lives.  She is also featured in a photography project called “LiveHer” to raise awareness about PBC and liver health. Learn more at: www.Facebook.com/LiveHerPBC.

Health Professional Radio – PBC and the LiveHer Project

Transcript

Neal Howard: Welcome to Health Professional Radio. I’m your host Neal Howard. Thank you so much for joining us. Our guest is Debbie Parsley. Joining us to talk about her diagnosis of primary biliary cholangitis or PBC. It’s a rare, serious and a little-known liver disease that affects some women who are in the prime of their lives. Welcome to the program Debbie. How are you?

Debbie Parsley: I’m fine. Thank you Neal.

N: Glad that you could take the time and talk with us today. What is it that you do for a living? Give us a little bit of background about yourself.

D: I have worked for this date for many, many years. I’m a fingerprint supervisor actually.

N: Is that strictly for the criminal system or there are other areas where you take fingerprints?

D: They actually are database, now has applicant and criminal. Teachers, nurses, real estate agents, everyone needs to get background checks these days.

N: You were just going about your normal day-to-day routine, living your life and you were diagnosed with PBC. What is PBC?

D: PBC is a rare autoimmune disease and it affects the bile ducts in your liver and it mostly affects women and the diagnosis usually happens after like 35 – ladies in their mid years.

N: Did you know about PBC or had you heard about it? Did anyone that you know have it before you were diagnosed?

D: I had never heard of it at all and I didn’t even know I had it. But with my career with the state, I was getting ready to retire. So I was doing some planning and in that planning my insurance company did a pretty extensive blood work. In that blood work they said I had abnormal liver enzymes and that I would need to get that checked out and see what that was all about. That is actually how we discovered I had the elevated liver enzymes. At that point I went to my primary care and we just sort of tested and rewatched things and watched things. I was just being careful of the intake of healthy foods and not combining medicines with alcohol, just cutting all that out every testing. The liver enzymes didn’t move or everything looked the same. It was just the progress of that double checking again, they’re the same, checking again.

N: You were diagnosed as a result of just a routine retirement planning physical done by your insurance company. Were there any symptoms anything that you thought well maybe I’ve got a cold or maybe this is hurting and I’m going to go to the doctor anyway or where you just feeling absolutely fine?

D: Absolutely fine. I was actually a runner and I mean I did a marathon in 2009. I did another one in 2013 where I’m not a fast runner but that just maybe would show you that I’m very healthy and it wasn’t affecting my lifestyle. My marathons were of course just run, walking very slow but I did complete them and I just have a real active lifestyle and did not notice any symptoms.

N: You say that it wasn’t affecting your life, no symptoms, everything was just great active life, healthy life. How is this condition affecting your life now?

D: Right now, it still is not affecting me. I am on medication and in the beginning, I did start having one of the most common symptoms is itching. I had started itching to the point where I’m like, “Is this from my garden?”. I couldn’t determine what it was and just researching on my own I did come up with maybe there was something. That was a hint of something but that’s the only thing that I attributed the itching to like being out in the garden, all that.

N: You’re one of the women that’s affected. How many women are we talking about when we say that a woman has PBC?

D: I really don’t know the numbers but I think if people will start, add in liver checks to their routine health, I think we may discover a lot more, because people may have it and not even know they have it.

N: I understand that there’s a campaign to raise awareness and that you are a big part of this campaign. It’s called the LiveHer campaign. Talked about this program and how you’re involved in it.

D: Yes. The LiveHer campaign project, it’s a photography project. It’s really special to me because my daughter Emily Blincoe is the photographer. I was one of the three women that she took pictures of and documented our lifestyles. This campaign is LiveHer combining liver and her since it does mostly affect women.

N: It does mostly affect women but sometimes it can affect men just like breast cancers. There’s a rare disease in itself even more so for men.

D: That’s true.

N: In this photography program, you say you’re one of three women that were selected to be a participant in this program. Are these photographs that chronicle your daily life or just photographs of like a normal family photographs or vacation photographs? How are the photographs raising awareness other than the fact that you and some other ladies who are dealing with the condition are in it?

D: I think it just shows a glimpse into my life and also there’s a video along with it where they actually ask you questions about it. It was just such a fun project and I was really happy the way it turned out. Although I was very nervous about being in front of a camera but it turned out really well. The other women, their stories it was just so interesting to see.

N: We’re talking about the liver. Some of the effects if left untreated are very similar to the effects of excessive alcohol drinking. Is that something that you are questioned about by your physician or the insurance company or any of your family or friends when they discovered that you had this liver condition?

D: Yes. It didn’t feel very good and I’ll probably didn’t talk about it a lot either at first, because the name actually was primary biliary cirrhosis. That just has such a bad being on it but the doctors are sure they say it’s nothing you ate or drank. It’s an autoimmune disease that is destroying your bile duct so that can cause cirrhosis to not working properly. It’s not functioning the correct way. It can build up the fibrosis kind of, in cirrhosis. They did very recently just changed the name over to primary biliary cholangitis which I’m so happy. It just is a lot better. Stigma, exactly. I’m happy to talk about it, discuss it and I really am hoping that others will get it checked out.

N: Give us a website we can go online and learn much more about LiveHer and this LiveHer photography program.

D: The LiveHer campaign is going to be found on Facebook. If you just search Facebook with LiveHer, all one word and that’s where you can find the videos and anything that’s been posted already. Every so often they’re adding more to it.

N: Very happy that you could spend the time with us and give us some insight into your life and into how you’re managing PBC. I’m hoping you’ll come back as things develop.

D: Thank you very much.

N: You’ve been listening to Health Professional Radio. I’m your host Neal Howard, in studio with Debbie Parsley. Transcripts and audio of the program are available at health professionalradio.com.au and also at hpr.fm. You can subscribe to this podcast on iTunes, listen in and download at SoundCloud and be sure to visit our affiliates page at hpr.fm.

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