Q&A: ‘Make them explain’: How a patient’s self-advocacy finally led to a PBC diagnosis
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Key takeaways:
- Don’t be afraid to question your doctor, Tiffany McLellan advised.
- Patients are the ones in control, she said.
When Tiffany McLellan was 18 years old, she was diagnosed with an ulcer in her digestive tract. She found relief with antacids for almost 2 years, but after her son was born, she started experiencing digestive issues and pain again.
Doctors told her it was irritable bowel syndrome, but they didn’t provide proof, nor would they do a colonoscopy since she was too young. McLellan wasn’t convinced, but she went along with the IBS diagnosis for almost 18 years.
Upon discovering that another patient who had been treated for IBS at that clinic actually had rectal cancer, the doctors went through their files and contacted patients like McLellan for more testing. An ultrasound revealed that she had gallstones and would need her gallbladder removed. Just before the surgery, her liver enzymes shot up, but no one followed-up on it.
Eventually, another doctor performed an ultrasound and diagnosed McLellan with metabolic dysfunction-associated steatohepatitis, formerly known as nonalcoholic steatohepatitis. More than a year later, she was diagnosed with primary biliary cholangitis.
In this exclusive Healio interview, McLellan shares her experience with the autoimmune disease and discusses how patients with PBC can advocate for themselves and help spread awareness.
Healio: How did you first learn about primary biliary cholangitis, and what was your initial reaction?
McLellan: While staying at a cabin with my family, I got a phone call from my doctor. He said, “Your inflammation markers and your other tests are telling me this is not NASH.” He then mentioned PBC but said I’d have to go in for a biopsy to verify.
I couldn’t really react because I was surrounded by my family and didn’t want to deal with it until the diagnosis was confirmed.
Healio: Did you experience any new symptoms that prompted doctors to wonder if it was PBC?
McLellan: I went to one of the top specialists in Minnesota, and when he did my original blood panels, he was watching the inflammation values closely. I think he had an inkling of what it was before that, but he wasn’t sure until he got confirmation that the inflammation wasn’t subsiding.
Healio: What would you like the general public to know about PBC, especially regarding early signs and symptoms?
McLellan: If you’re having digestive issues, make your doctor prove what he’s diagnosing you with and question it. I could have gone many more years without being diagnosed. But since I have two other kids with chronic conditions, I’ve already been taught to go against the grain and fight for what I believe is right until someone tells me I’m wrong.
Just because a doctor says it’s one thing does not always make it true — make them explain. It’s hard for a lot of people to question someone who has more education than them, but doctors often are just making educated guesses. If it’s not their specialty, they may not be looking at the whole spectrum.
Second, I would tell both doctors and the public that just because someone has liver disease does not mean they drink. I’ve had doctors who are more frustrated than they should be when I’ve had an emergency come up. There are people who have gone to the emergency room and had doctors say to them, “If you’d stopped drinking, this wouldn’t have happened.”
Drinking is not what causes PBC. It is an autoimmune disease — it is genetic and environmental. Unfortunately, that’s all the information we have right now.
Healio: Can you share some of the challenges you’ve faced in managing PBC, both medically and personally?
McLellan: A few years after my gallbladder removal, I experienced severe inflammation. It was hard getting doctors to look for other conditions and issues because they knew I had PBC. It wasn’t until I started consistently doing acupuncture to control the inflammation that I could determine exactly where it was.
It turns out that I had gallstones sitting in a pocket where my gallbladder used to be, as well as a fibroid in my uterus. It’s difficult to get doctors to listen to us, because they want to blame the diagnosis they’re already aware of.
Healio: How has your experience with PBC impacted your daily life and overall well-being?
McLellan: PBC has positively and negatively impacted my daily life and overall well-being. Because of my PBC diagnosis, I’ve met many great people and been introduced to more options than a traditional doctor. On the other hand, PBC has negatively impacted my emotional state and forced me to be a bit more cautious when eating out.
It has also caused me to have fatigue. Imagine going about your day and suddenly it feels like you’re walking around with a lead apron. Your body gets heavy from your head to your toes and you need to go back to bed, even though you’ve been awake for only 30 minutes.
Healio: What support resources or communities have you found helpful, and how did you discover them?
McLellan: The most helpful resource I’ve found is PBCers Organization, a nonprofit that provides education and support to patients with PBC and raises funds for PBC research. I was blessed because someone told me on the PBCers’ social media page that a PBC Warriors group had just launched in Minnesota. Through the local group, I’ve not only met new people, but I now co-run the group and help welcome people in our state to in-person and Zoom meetings.
Healio: In your opinion, what are the most effective ways to raise awareness about PBC and support those affected by it?
McLellan: Talk about it — make people aware that it never goes away. Whether you get a liver transplant or not, you have a disease that could affect the new liver. We may look fine on the outside, but that does not mean we’re fine on the inside.
The number of people being diagnosed at a younger age is increasing more and more every year. There are new tests for people who aren’t diagnosed by the antibody test, which normally predicts PBC. I recommend people request a liver panel as part of their physical exam. If you go without being diagnosed, you could be in stage 4 and that is not when you want to find out.
The best advice I’ve ever received was when my son was put back in the hospital 48 hours after he was born and the pediatric doctor said to me, “You are his mother; you are the one to fight. If you don’t like what I’m doing or what the nurse is doing, you tell us to stop.” Those are words that have stuck with me. We, the patients, are truly the ones in control.
For more information:
Tiffany McLellan can be reached at pbcers@pbcers.org.
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