Living with PBC and Other Diseases: A Never-Ending Struggle

Being diagnosed with primary biliary cholangitis (PBC) is certainly daunting enough. But when you must live with several other diseases simultaneously, it often becomes an exhaustive day-to-day struggle.

It's hard living with so many conditions at once

Unfortunately, many autoimmune diseases often occur in clusters and others are found in our genes.

I was diagnosed with PBC over 22 years ago. Before that I was diagnosed with type 2 diabetes. I have a history of cardiac issues in my family, including high cholesterol, high blood pressure, heart attack, and stroke. This requires periodic blood work and stress tests. Due to excessive sun exposure in my youth, I have developed numerous skin cancers. They have required burning, freezing, surgical excisions, and Mohs surgeries, often involving multiple office visits and weeks of recovery.

If that is not enough, 15 years ago I developed irritable bowel syndrome along with severe diverticulosis. It led to extensive abdominal surgery, including colon resection, and the removal of a grapefruit-sized fistula from my bladder. There was also the installation of an ileostomy bag, which was taken down six months later.

About the same time, I developed Peyronie’s disease of the penis. It appears to be related to autoimmune problems like those with PBC. And most recently I have developed chronic hives, another autoimmune issue, requiring daily doses of antihistamines.

I often wonder: which symptoms go with which diseases?

Combine all these health issues, and it makes me feel like I live at the doctor’s office, the bloodwork lab, and the imaging center. There is not a week that goes by that I don’t have to juggle time to make appointments. Sometimes it feels overwhelming and very confusing. It often causes me mental anguish and worry.

I often wonder which symptoms go with which diseases. And should I be so concerned as to act? Are the chronic hives a symptom of my PBC progressing? Is the fatigue I feel after a bike ride or a golf game normal? Or is it an onset of cardiac issues or the worsening of my PBC?

Is the nausea I feel signaling the onset of more gastrointestinal issues, the worsening of my PBC, or simply a reaction to all the prescriptions I take including Ozempic? Are the dry mouth and dry eyes associated with my PBC or worsening of my diabetes? Even my doctors can’t tell me which symptoms are from which diseases. And, as my wife says, you’re 74 and a lot of this may be because you’re just getting old!

An endless maze of specialists and tests

Not long ago I experienced two urinary tract infections (UTI). This prompted a referral to yet another specialist, a urologist. He seemed concerned, indicating that it was unusual for a male to experience multiple UTIs. I mentioned to him that I have PBC and that there seems to be a significant connection between UTIs and this disease.

He said he was unfamiliar with PBC but would do research. In the meantime, as of my writing this, he wanted me to schedule a cystoscopy and a CAT scan to ascertain what the causes might be. More invasive tests!

Thank goodness I have been retired for 7 years. Or this endless maze of specialists, treatments, tests and scans would have been nearly impossible to navigate. It’s almost like a full-time job.

The challenges of tracking appointments and medications

As an older person, I have not yet fully embraced the digital information age. I still use an actual paper calendar to track all my appointments and tests, as well as golf games and social events. This seems to work well. At a glance, I can see what is scheduled for the next few days and prepare accordingly. Of course, making those appointments and checking results has become more difficult, discouraging, and frustrating.

So many doctors and labs have moved to online portals requiring passwords, multiple layers of authentication for security, and uploads of identification and insurance cards. I tried to make my CAT scan appointment on the radiology portal and got through to the end twice, but the portal locked me out. I ended up calling directly and had to regurgitate all the information I had imputed online!

Tracking my prescriptions and supplements is also a chore. I use a pill organizer for both AM and PM dosages. I take 11 pills in the morning and four pills prior to bed. This works very well, particularly when we’re on vacation. In that I take both Ursodiol and Livdelzi for my PBC, I have come to rely on my watch alarm to tell me when to take my Livdelzi. This is necessary because I'm not suppose to take Livdelzi within 4 hours of taking a bile acid like Ursodiol.

How an organized approach helps me

I believe my years in teaching and sales management have helped me through this process of dealing with multiple diseases.

An organized structured approach seems to minimize fatigue, reduce my anxiety and helps me get the medications I need and when I need them. The best advice I can offer is to take life one day at a time and try to find peace and happiness where you can.