How Am I? An Update on Dragging Along with Primary Biliary Cholangitis (Cirrhosis)

Roughly a year ago, I said, I’m done. No more pricks or scans. Longtime readers will know that my life from 2010 to 2015 had become a gruesome slough of gastric/esophageal varices bleeds, an uncommon complication of early and mid-stage cirrhosis (not so uncommon in end stage). My labs were never that abnormal during this period, so I was diagnosed with every weird ulcer subspecies in the field guide. Not until I had a shunt [TIPS] put in my liver in July 2015 could the portal hypertension be measured, and it was high.

I announced I was going to quit writing about this, but I get occasional questions, and I may as well keep the history going.

I have had no more bleeds, and that is a very good thing. I think the encephalopathy which followed had some lingering effects. My spatial sense isn’t what it used to be; I can go to the drugstore, which requires exactly one turn, and end up going in a circle. Subtraction of 3-digit numbers is hard. Short term memory isn’t too keen. I haven’t had any recurrences, and I think this is attributable in large part to eating absolutely no red meat or pork. But the fatigue, which is the most common complaint of people with PBC, seems worse.

It is hard to explain because it is not everyday tiredness. It doesn’t matter if I sleep 12 hours, after being up an hour or so I am going to be tired. I can press through, and a really active day is one where I go out to breakfast, walk the dog, and go to the store. I’ll pay for it the next day when I will be too tired even to read. Maybe if I did more, I would feel like doing more, you might think. But 2 days on is going to mean 2 days off, and 3 days on will be 3 off, and at some point I will quit enjoying being on, so if I don’t have to, why not stop?

Remember The Roadrunner cartoons when the coyote is squashed by a boulder, peels himself off the pavement, and then an Acme truck  comes barreling down and pancakes him again? It is like that. Still the coyote keeps chasing that roadrunner.

I vacillate between gratitude for every day — for security and safety and a loving husband who picks up my massive slack —, and weariness. Facebook can get to seem like those wretched newsletters people would send out with their Christmas cards, where all reports are of visits to exotic places by people who are legends in their own minds. Good on them. But Christmas newsletters came just once a year.

Since I don’t go out much, the feeling of being an alien increases. I look at these reports from a distant place. Stay out of a big box store for a year. Then visit. Lord, how much stuff there is. Who could possibly need this much stuff? I’ve bought one pair of shoes and one dress in the past three years.

Goodness me, how much time and money people spend on food. So much of social life seems predicated on food and alcohol, which I simply treat as something in the category of never again.  The most annoying problem I have may or may not relate to the PBC, but finally I have an appointment with an esophageal expert. It’s been going on for years. I’ve had the standard three tests for esophageal motility, but results were negative, no problem. I don’t care what the results of these swallowing tests conducted only with liquids are. It is not normal way too often to be able neither to swallow food all the way or get rid of it the opposite way. My hepatologist agreed (hurrah!).  I eat a lot of refrieds with rice. Smooshy and a fair protein source.

So yes, I did go back to have another set of sticks and an ultrasound done. I decided it would be stupid not to check on the TIPS. The TIPS is functioning; “patent” is the word of choice. The real time ultrasound had been going on for 40 minutes when the sonographer left to fetch the radiologist himself. There were veins she just could not find. Apparently, I have a strange body architecture.

At the appointment the next day, the hepatologist asked that I return for a CT scan. We had planned a trip to the beach, and went ahead, and I sat on the dunes and thought, isn’t this just dandy.

Then Monday I had the CT scan, which looked as expected, except for “small” varices in the stomach. Dear god. “Varices.” I thought I would never have to see that ugly word again.

Most people with PBC don’t haven’t problems with bleeds. A tiny number who have the shunt installed do develop gastric varices. Most of this little pool do not have varix bleeds. I don’t want to be a footnote to a footnote to a footnote. Neither will I be terribly surprised if I am one.

3 thoughts on “How Am I? An Update on Dragging Along with Primary Biliary Cholangitis (Cirrhosis)”

  1. Yes, I totally understand what you mean. It is so much easier to offer words of encouragement to those that think they know you, Yet don’t know the struggles, heartache and pain of our daily lives. I find I can only open up so far, before my ‘friends’ back away. I am glad you have found an outlet through online life. I am also glad that it is fulfilling for you. That is wonderful to hear. Blessings, MrsT

  2. Thank you, MrsT. I had you in mind when I wrote. I actually happier than I might sound. I have a very active online life, and I find it so good for me to offer words of encouragement to others, most of whom do not know my story. I’m sure you know how sometimes people back off because they feel that you have so many troubles of your own that you can’t possibly care about others’, when exactly the opposite is true. Thank you and best wishes.

  3. You will never be a footnote, in my opinion. You’ve provided vital information for many that could find none. I am one of those many.

    I am glad you decided to write an update on your situation with health issues.You have been in my thoughts.

    I am sorry to hear about the varices. I pray they do not produce active bleeds that require intervention.

    I mind opinion you seem to be a very strong woman. You may not think so with your inability to do much an any given day. Or if you do much one day, you go without the next.

    Personally, that is how my life has been for the last 9 -10 years. I realized I didn’t need to get out and go to stores, shop, spend… to feel happy and productive. I have flower, and herb gardens and enjoy them and nature’s critters. Most days I just take a walk around the garden for a bit and get a little sunshie. I can’t do allot, or I pay just like you yourself. My health issues are chronic pain, osteo & psoriatic arthritis, fibromyalgia, 5 or more herniated disks (upper and lower) along with degenerative spinal stenosis upper and lower, bi-lateral partial knee replacements, neurological disorders in the extremities of my upper and lower limbs plus more issues.

    I pray you find something, no matter how minute it may seem to you, to make you smile and enjoy what you can.

    Know that I hold you in my thoughts and prayers, as I am sure many others do as well. I am grateful for the information you provided on Death & Dying on the internet years ago. I desperately searched for information when there was none, until I used some key words in my research that led to your site. The information you provided was a saving grace for me. It helped to answer so many questions I had.

    Following your health issues, scares has opened my eyes to how the medical industry handles, treats, diagnose issues of unknown origin to get to a diagnoses. And, the length of time it has taken you to get answers…

    Bless you and Hugs, MrsT

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