PBC: No Varices for Me. Well, Just a Trace.

As I noted in my first post on primary biliary cirrhosis, during my annual routine appointment I was advised to have an endoscopy procedure to determine whether I had varices in my esophagus as a result of portal hypertension as a result of cirrhosis as a result of the autoimmune destruction of my bile ducts, that is, primary biliary cirrhosis.

I was surprised by this recommendation, since my blood enzyme levels had normalized and in 2007 an MRI of my liver did not reveal damage, but things can change, and the extent of damage my liver has suffered is unknown. There are four stages of PBC, with cirrhosis being stage four, but my case had not been staged, as they put it, because I have never had a liver biopsy.

When I first visited the hepatologist, we discussed whether a biopsy was warranted. He had enough other information to feel confident about the diagnosis, and the treatment he would start me on would be the same regardless of stage. So we concluded that while the biopsy would provide more information, it wouldn’t necessarily be useful enough information to warrant the hassle.

Medicine.net’s comprehensive article on PBC notes that whether a biopsy is optional

usually depends on the level of confidence in establishing the diagnosis of PBC using the liver tests, autoantibodies, and ultrasound. In the presence of cholestatic liver tests, high levels of AMA, and an ultrasound showing no bile duct obstruction in a middle-aged woman, the diagnosis of PBC can be made rather confidently without a biopsy.

Even had I had a biopsy three years ago when I was diagnosed, there still would have been only one way to know whether or not it was time to start worrying about varices. And that was to look.

Before we began, the doctor told me that there were four levels of varices. Levels 3 and 4 require treatment, starting with medication.

I asked whether even if I did not now have varices, was it not the case that sooner or later I would?

He quickly responded yes, then caught himself and backtracked, with the typical doctor’s abhorrence of an unqualified answer, noting that 60% to 80% of people with cirrhosis have varices, and in 1 of 6 cases, within a year’s time, if left untreated, the varices would burst and bleed into the esophagus.

The worst part of the endoscopy — really the only bad bit — had nothing to do with the endoscopy itself. I knew I was in for it when the tech responsible for starting the IV began complaining that I had no veins, and sure enough, the IV entry was and remained painful and I have the bruise to prove it.

A not-as-nasty as I was warned to expect spray was squirted in the back of my throat, Demerol was added to the IV port (there was no other use of it in my case), and that was that, until I woke up.

I had no sore throat and began eating and drinking immediately, although I’d nearly fall asleep between bites of cracker.

And the verdict was just a trace of varices, no need to do anything, just repeat in a year or two.

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5 thoughts on “PBC: No Varices for Me. Well, Just a Trace.

  1. Very happy to have found your site. Was dx’d w symptomatic PBC back in 1998 (at the tender age of 30). Have been trying to live a great life since then and refusing to allow this illness to control my life.
    Last August it took control of me again 😦 and they discovered portal hypertension and cirrhosis, so dealing with the fact that PBC is actually my reality again and since my Dr. is somewhat useless for info – again now searching for answers/information.

    Thank you for having this site and sharing your stories. By sharing you are really helping others!!

  2. I very much enjoyed reading your blog entries and the way you articulate your perspective with a sense of humor. I related to your view of the necessity of enduring an endoscopy. The one thing you stated that hit it squarely with me was the sentence “Surprises during doctor appointments frustrate me: I need time to think to know what questions to ask.”
    I’m seeing my second Gastroenterologist, as I recently switched insurances. Having been treated for PBC for about 2 years, endoscopy and varices was never explored with me. All of the sudden, this new doctor is telling me about this big bloody blow up mess, gives me the literature on the procedure, sends me off on my merry way and goes on vacation. I haven’t had the chance yet to ask my questions, which causes me anxiety. I found your blog entries when I was researching endoscopy for PBC (my doctor is unavailable until later this week), which has relieved some of my anxiety.
    I also related to the experience you described on “Varicose Veins in my Esophagus?” when you stated, “My first impulse was to say no to this test based on a strong and irrational desire not to submit to another test, a resistance that I couldn’t explain and thus ignored.” I’m right there with you, but I can’t ignore it as it has been scheduled for next month. I also don’t think my doctor did a good job in convincing me of the necessity of the procedure.
    Similar to your experience with the painful I.V. for the endoscopy, the most traumatic and painful part of my biopsy was the soreness of the injection site when the nurse gave me a shot of Demerol in my upper arm. The nurse must have hit a nerve (literally) as I had an egg-sized lump for weeks after the procedure, and it looked like I had a very buff arm. The biopsy slide was sent for second and third opinions and three doctors all concurred that the diagnosis was PBC – stage 4. Given the odds of being diagnosed with such a “rare” disease, you’d think we could have won the lottery! Also, the potential social stigma of having the word “cirrhosis” in the name of the disease and the likelihood of people to associate it with alcohol or drug issues has kept me from sharing with some friends/co-workers about this disease.
    Also similar to your situation, I, too, could have been properly diagnosed years before I was actually diagnosed. I went to see a dermatologist for darkening patches of skin and itching. I specifically mentioned to the doctor that I realize that some skin conditions are indicative of a more serious disease, and that I wanted to make sure I wasn’t going to die of something. I was diagnosed with having hypo and hyper pigmentation (I lost some pigmentation from scratching so much), and was prescribed an old anti-depressant (pre-SSRIs) that has a side effect of having anti-histamine qualities. The doctor ordered blood tests, as the medication is processed by the liver…and she didn’t even mention whether there were abnormal numbers in the lab results. Years later I went to my family doctor for jaundice.
    Reading your blog also made me realize that perhaps I need to connect with some of the support systems available via the internet (I’m willing to bet that nobody else has the same diagnosis in the itty bitty Northern California town I live in).

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