PBC Re-cap by Comment

I like most things about the WordPress template I use for this blog, but if you read posts on the home page and don’t click through to the page for the individual post, you’ll miss the comments.

And I had such a thorough response to one of my posts, PBC: No Varices for Me. Well, Just a Trace, that I didn’t want you to miss it. You can read all of it here, but I want to respond to some of dsars’ remarks because I think her comment sums up a lot of the points I’ve tried to make  in this series of posts.

Missed Diagnosis:

I can’t stress enough how much we need to doublecheck our own lab reports and to question our doctors. I told you how in 2006, the year I was diagnosed, I went back and got hold  of  as many lab reports as I could from the past  and found that  in April 2001 my alkaline phosphatase was through the roof. Here is dsar’s story:

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.

The Connotations of Cirrhosis:

Seems it’s not just me who’d rather not tell people what I have if it means suffering their assumptions:

 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.

Here’s a modest proposal. We can keep PBC; we know what it means. We can tell the rest of the world we have Primary Biliary Condition, that is, PBC. If they are sincerely interested and search for “primary biliary condition,” they are going to reach “primary biliary cirrhosis,” and then the objective authorities can explain to them about the cirrhosis bit.

All of a Sudden, Varices:

Commenter dsars, whose biopsy places her at stage 4, writes:

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.

Frankly I don’t understand why as soon as her biopsy indicated stage 4 dsars wasn’t sent for an endoscopy since the varices come, if  they do, with cirrhosis, and the “big bloody blow up mess” is not a surprise you want.

Get Critical About Your Care:

I’m grateful to dsars for having written since it is good to know the work I’ve put into these articles has been of some small use. She concludes:

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).

Yes, dsars, you should visit pbc.org. And there maybe you can find what hepatologists others in your area are using.

I’m willing to bet that you are right: in your “itty bitty” town you are the only pbc-er. And you know what that means? You are your gastroenterologist’s only pbc-er.

I fear you could be hours and hours from San Francisco, Sacramento or Portand. I’m lucky enough to be just a 100 miles from a major university medical center. I was ready to yell at you:  get a hepatologist — but now I’ve stopped myself.  If she could, she would.  I wish I could help.

1 thought on “PBC Re-cap by Comment”

  1. I also came up with an alternative way of sharing my “condition.” I thought that I could be mysterious by saying that I have this rare auto-immune disease, and depending on the person I’m sharing with, I might be willing to say that it adversely affects the bile ducts. Perhaps people won’t immediately associate my condition with liver or cirrhosis.

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