I’ve described the gory consequence of my primary biliary cirrhosis: gastrointestinal bleeds. There’s also collateral damage, for want of a better term, that isn’t so dramatic and isn’t life-threatening, but like the disease itself, slowly does lasting harm.
Primary biliary cirrhosis [PBC] is an autoimmune illness in which the body’s own immune system destroys the bile ducts of the liver, leading to cirrhosis and liver failure. Most research suggests the disease’s progress can be slowed by years, even decades, in patients diagnosed early who respond to medications that thin the bile.
I started out as one of these lucky ones. I was diagnosed in December 2006, responded immediately to ursidol, and my liver chemistry values largely returned to normal.
I ignored my disease 364 days a year. On the 365th, I went to the Liver Center at University of Alabama-Birmingham. I didn’t even tell most people about it. It seemed abstract, really: just a matter of numbers.
Some of the collateral damage is to other parts of my body. My hepatologist tells me that his patients frequently complain that their teeth are crumbling. My salivary glands don’t work properly. My mouth is like Afghanistan: dry, bloody, and hopeless. You know that question mark shaped thing that dentists hook over your teeth to suction fluid while they work? They don’t need to use one with me.
But then the bleeds started, with the first and worst in early August 2010, followed by another a year later, a third in early March 2012, and, since October 5, 2012, four more. Even after the first and second bleeds I could convince myself that with more frequent endoscopies, these could be prevented.
And then came this fall.
I have been rather spectacularly unlucky.
I should make it clear especially to others with PBC that my experience is not typical. The bleeds are like a side effect of PBC. Some people have them, and many don’t. My hepatologist says it is very unusual for someone to have as many bleeds as I have had so close together.
When you have four hospitalizations in 16 weeks, it’s hard to ignore that things are not going too well — and you can’t keep the problem to yourself. People start worrying.
And the soul-lacerating collateral damage mounts.
Because of this illness, I am not as good of a mother, wife, daughter, friend, sister, aunt, neighbor, or even pet owner as I like to think I otherwise would be (this was going to be the year I kept up with the collie’s coat).
I don’t have the energy that others do. After bleed 7, I had three transfusions, but still I am anemic.
I need to visit my 83-year-old mom, but I’m scared to fly. The thing about these bleeds is that there are only two warnings I have experienced: fatigue and loss of appetite in the 12 hours or so before one starts. But lots of things can cause that. The bleeds are stoppable if IV fluids and drugs can be administered in a timely fashion, but what would happen if I started throwing up blood on a plane? Moreover, how much use would I be to my mom if I began a bleed while visiting? I drove a half day away to see my son for his 23rd birthday. He spent it visiting me in the hospital.
My children were 14 and 20 the first time. None of us knew what was happening. They saw it all, as did my husband: the blood, the shock, the ambulance sitting in the street for 15 minutes before even starting for the hospital.
I had four transfusions that time and rebounded quickly. We thought it was a one-off. For a year it seemed it would be.
But not now.
The thing is, the bleeds aren’t painful. Gross but not painful. The worst part is the IV sticks.
What is painful, though, is knowing that what is happening to me is taking a toll on those I love — and there isn’t a thing I can do about it.