PBC Patient Awaiting a Live Liver Donor – LiveHer [transcript] [audio]

Guest: Bel Kambach

Presenter: Neal Howard

Guest Bio: Bel Kambach, 50 (St. Cloud, MN/Dominican Republic) – Bel, who has stage 4 PBC and awaits a live liver donor to save her life, works as a college professor of geography during the school year and is a speaker on a luxury cruise line during the summer. She speaks 6 languages and has visited 103 countries. She was initially misdiagnosed with autoimmune hepatitis and tried 27 different medications before finally being diagnosed with PBC at the Mayo Clinic three years later in 2012. A single mom, Bel’s story is a remarkable one, including her multi-year fight for a diagnosis, her eventual liver failure, and her ongoing and dramatic search for a live liver donor.  Incredibly, she’s done all of this while attending to her students, and navigating the ups and downs of being a single parent.  Bel is also an ambassador for the LiveHer National Photography Project. Learn more at: www.Facebook.com/LiveHerPBC  

Segment Overview: Bel Kambach talks about her life as she awaits a live liver-donor to save her life from PBC or Primary Biliary Cholangitis. Bel is also an ambassador for the LiveHer National Photography 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 Bel Kambach. She’s got stage 4 Primary Biliary Cholangitis or PBC. She’s waiting on a live liver donor in order to save her life from this rare chronic liver disease that affects women much more than men and is incurable. She’s also the ambassador for the LiveHer National Photography Project. Welcome to the program Bel.

Bel Kambach: Hello. Thank you for having me.

N: I’m glad that you could take the time. I’m excited to talk with you, especially since you’re a part of our ongoing series on PBC or primary biliary cholangitis and the LiveHer National Photography Project. Tell us Bell, what is your story? Who is Bel Kambach?

B: I currently live in Minnesota but I’m originally born and race in the Caribbean. I came here to pursue studies and then with offer the position as a Professor at the Saint Cloud State University, it’s a local State University in Minnesota. After a while teaching, I was diagnosed with this horrid diagnose that is rare, invisible, no cure illness affecting mostly women. When I heard, I was almost, … At that point in my life, I was the picture of health. I’ve done such a great job taking care of my body from vegan to vegetarian to eating totally organic. I really had a very healthy lifestyle. For doctor to tell me that I had a liver illness or someone that doesn’t even know that taste of a beer or alcohol, it was truly – I was just in disbelief. The only thing that crossed my mind was this is a misdiagnosed.

N: Had you gone to the doctor for any of the symptoms just to be told, you had one thing or the other and then found out later that you had PBC? Or were you diagnosed properly at the first onset of symptoms or problems?

B: No. I came in to the dermatologist because I had hard itch in my feet. I had fatigue. But fatigue no one goes to the doctor because they feel tired. I just thought I was just overworked or over travelled. But my liver enzymes were very high and so the dermatologist said, “You’re skin looks perfect for your age. Bel, just to me everything looks perfect.”. However when you have such a severe itch, it may, will mean that it’s internal and not external. We need to do more research. I went to a specialist. I have pathologist and immediately without even thinking, just by looks, he looked at me as a woman of color, young. So he thought, this one had a crazy lifestyle when she was young. Immediately, he wanted to condemn me with hepatitis and declared me that I had autoimmune hepatitis. I was even more furious because I thought this man is not even looking or researching deeper. He’s only looking at me for what I look like and I said, “‘Did you ever think that Professors live the most boring life that you can think of?”. I know that I have not been in danger. Yes, I was born and raised in a third world country, I wouldn’t rule out hepatitis, a not so evil one from just vegetables as much washed properly. Most of us are immune to that. Yes I believe that. He gave me a diagnosis of autoimmune hepatitis without thinking. He was just measuring me in computer and he’s not even looking at me either and I said, “I want a second diagnose and I want to see another specialist.”. I went to the Mayo Clinic, which happens to be one of those hospitals that a person like me, single mom and have minority could never afford a Mayo Clinic in Rochester, Minnesota. I mean this is the most famous and most expensive clinic in the planet. However, because I’m a state employee, when you have a rare illness by default, your insurance sends you there. I was lucky there to meet a lot of specialists and faculty that taught PBC. When they saw that I was not responding, they said, “You do not have autoimmune hepatitis. When you’re not responding to any of the drugs for autoimmune hepatitis which is mostly steroids or prednisone, perhaps what you have is PBC.”. I had a biopsy, CT Scan and that’s how I was properly, after three years it took to be properly diagnosed with PBC. However, that sits a number on me because when you abuse steroids for so long, not meeting them, it creates a cell in your body. I think that, that contributed a lot for my disease to progress so fast. A small percentage of the people that have PBC happen to have a double hell which is non retractable pruritus. And pruritus is the devilish-hellish itch which is 24/7. According to research done in Germany and Italy, Faculty in Medicine – treating this illness say, one of the largest contributing factors to suicide is the pain that doesn’t go away, something like fibromialgia that you cannot control or cure or itch that doesn’t stop, that would drive to human being to the verge of commiting suicide. They say it’s easiest to win the lottery than getting PBC, non retractable pruritus and non responding and I got all three of them.

N: Now, you’ve been searching for live liver donor for quite a while now. How is that going and what is that process been like for you?

B: I think that has been more evil than the disease itself. I have been listed for three years with no hopes for call. The reason being is, I believe that right now, truth is 27,000 people waiting for a liver. Unfortunately I have all positive blood type which is the universal blood type. I thought that because I have universal blood type, that would be easy to get an organ. The problem is that everyone on the list is all positive also because it’s such a common blood type. If I had a rare blood type I would jump up higher on the list, because I can only get an organ from that. The live donor, I have tested 15 friends and family member and only one which was an altruistic donor, stranger I met on Facebook was a 110% perfect match and he was ready to donate on November 27. We were scheduled for a transplant, 11 days prior …, he backed out. He got scared and that was it.

N: So, you’re still waiting.

B: It was devastating. I’m still waiting and everyday my MELD score gets higher. The higher your MELD score is the higher the chance that your body will reject it because you’re too sick. I’m at this point to list what to do. When you’re in a point that you’re not able to save your life because your life can only be saved by someone else, I have only left it in God’s hands, because I just no longer can do anything to save my life. If it’s up for me, I would let it be. I had such a beautiful life but I have a 15 year old daughter and she’s my sole reason to exist. She’s so young. She only has me. As a single mom, the only thing that keeps me going and keeps me alive is her.

N: You’re also doing something to help others through a photography project. You’re the ambassador of the LiveHer National Photography Project. Talk about this project and your involvement and what this project means for folks like you and people who may not be in the same situation as you, but still are dealing with PBC?

B: To me, it’s been a truly stunning experience. The campaign that I searched for this entire decade, a campaign done by women, marketed by women, one very creative women photographer, exposing these illness in the most beautiful form possible, can be seen by the untrained medical professionals, to educate them about rare, invisible, no cure illness affecting women was to me a win-win situation. This is what something that I have searched. I said perhaps I might not be able to save myself but if I can create awareness so younger women get tested on time then my mission in life is done.

N: Where can we go and learn more about the LiveHer National Photography Project? I do believe that it’s available (crosstalk).

B: It’s online. It’s on Facebook under LiveHer, one word.

N: It kind of a play on words, live and her, LiveHer. The LiveHer National Photography Project raising awareness for primary biliary cholangitis. Bel, it’s been a pleasure and an honor speaking with you today.

B: Thank you.

N: You’ve been listening to Health Professional Radio. I’m your host Neal Howard. Transcripts and audio of the program are available at healthprofessionalradio.com.au and also at hpr.fm.

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