Varicose Veins in my Esophagus?

“And if the dam breaks open many years too soon…”


I was doing a pretty good job of cultivating indifference toward my bad luck at having somehow acquired primary biliary cirrhosis [PBC], taking my 1000 mg of  Ursodiol most days (sometimes I forget), and not scouring the internet hourly looking for the article that would tell me my future, confining that process to just the week before what had become an annual appointment at the University of Alabama at Birmingham liver clinic.

After all, my alkaline phosphatase levels had dropped from the high 400s to the upper limit of normal, 117,  indicating the Ursodiol is doing its job, increasing bile flow from the damaged bile ducts, thereby theoretically slowing the progression of liver damage caused by backed-up toxic bile.

Typically it would make sense to judge a treatment’s effectiveness  not quite so objectively, but in this situation, I’ve only the numbers to rely on.

Do I feel better than I did in December 2006 when I started on the Urso Forte (my favorite brand name for a drug, roughly translatable, or so I claim, as Strength of the Bears)?

Not dramatically. The only symptoms of PBC before the liver is damaged significantly are fatigue and itching, and I never experienced the itching and who among us doesn’t complain of fatigue?

This week the only bad marks on my blood tests were for ones I’ve scored poorly on for at least four years: low white blood cell count and low platelet counts. In the past, these scores were considered not bad enough for alarm, just an anomaly, perhaps.

So I was surprised to be told I should have an upper GI endoscopy to detect whether large varices, or swollen veins (like varicose veins), caused by portal hypertension (itself caused by cirrhosis) are in my esophagus. Left untreated these could “burst and bleed into the gut.

But I gather that an association has recently been made, or at least suggested, between portal hypertension and low white blood cell count (leucopenia), and/or low platelet count (thrombocytopenia). Moreover, in 2006, on the long and wearying road to the PBC diagnosis, an ultrasound showed a very much enlarged spleen, and hypersplenism is another red flag.

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.

Afterwards, after I started processing this new information, that impulse seemed less irrational: if I do have varicose veins in my esophagus, it probably means that I can no longer tell myself that my mostly normal blood test numbers  mean the PBC was diagnosed  and treatment begun in time to escape cirrhosis, at least for a while. It will mean that  my liver is already dying.

Or so it seems to me. Surprises during doctor appointments frustrate me: I need time to think to know what questions to ask.

 

Resources for the curious or those in a similar fix:

A simple intro to PBC is at PBC Foundation

A much more thorough one is at MedicineNet.com

The “bad luck” link in the first sentence of this post refers to the rarity of the disease. In “Food for Thought about Primary Biliary Cirrhosis in 2006,” an essay on the website of the UC-Davis Immunology Lab, there’s this statement:

PBC is thought to be more commonly found in specific areas of the world. In particular, disease frequency varies between 10 and 400 cases per million population. It has been suggested that PBC is more common in northern countries, including England, Sweden, and Northern American states.

MedicineNet says:

Studies indicate that the number of people with PBC at a given time (referred to as the prevalence of disease) ranges from 19 to 251 per million population in various countries.

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13 thoughts on “Varicose Veins in my Esophagus?

  1. hi my name is lynn my son has cystic fybrosis a lung desease he was born with and when he was 8 years old he was found to have liver desease cirrosis of the liver he has had esophugus bands put on 5 varicous veins in his esophugus and just this last friday he was feeling not well turned pale and went to bed he woke up feeling really faint felt like he was going to pass out then felt better this was about 3 am then around 7am he started barfing up lots of black blood i rushed him to the hosptital and he then barfed about another icecream bucket of blood i was so scared doctor still wasnt’t there i broke down crying and told the nurses my son is really sick please get the doctor now well doctor finally came seen all the blood and said ambulance is coming to send us to another hospital which would be in edmonton alberta the university hospital we were at the devon hospital in devon. i was so scared my son was going to die he looked so scared but i tried hard to keep it together we got to the hospital and with in the hour they were doing his surgery he had 15 varicose veins the most they have ever seen in a patient and 3 were bleeding they banded them. it was pretty serious I really didn’t know to much about this condition but with him losing all that blood he did need a blood transfusion 2 days later 1 pint of blood. They had a hell of a time getting needles in his arm that blood would come out of it was terrible seeing him go throw all those needle trys to get some blood work done they must of pocked him 10 times in each arm and other people would come in to see if they would have more success. its not fun seeing your son go throw something so horrible if i could have taken his place i would have in a second then when they put him under he said he was awake and was trying to wake right up to tell them he couldn’t breath he felt like he was suffercating and it hurt like he was suffering when he came throw he started crying right away saying he was trying to tell them he couldn’t breath and he was soso scared. I just consoled him and told him its all over and your going to be fine then he started feeling pain in his chest and he begged for some pain killer they gave him morphen. then he was feeling a little better and told me he pooped hes pants i said don’t worry thats ok and then he laughed and said mom i’m only kidding i knew i had my funny loving son back. hes still in the hospital it will 5 days tomorrow and he says might get out tomorrow i’m going to be so worried for him and now i’m thinking they might want to put him on a liver transplant list. i’m so scared he dos not deserve this it would be nice to beable to talk to someone are some peaple that are going throw this for him to take to too hes pretty private about his sickness and does not take care of him self like i would like to see maybe someone could open up his eyes to take care of him self better and let him know hes not alone on this any good advice any nowledge in making him better would be muck appreatiated my e mail is lynngartly@hotmail.com

  2. Glad to hear that you are alright ! I have those also – and it has contributed greatly to my gastroparesis. Take care!

  3. Thanks for the information you have shared regarding Varicose Veins in my Esophagus? If you or any of your reader’s are interested I have set up a networking blog specifically for Portal Hypertension (PH) and it various side effects. One of the side effects of PH is esophogeal varices which I have myself, but have never experienced a bleed to this point. Of the few people I know with PH and Esophogeal Varices – many have experienced a bleed and survived. My goal, like you is to offer hope to others who may not know anyone with the disease or it’s disconcerting side effects! Thanks again. Click here if you wish to view my site: http://portal-hypertension.com/ Take care!!!

  4. Thank you so much — I am glad I can be of use. If you do have PBC, I hope you are in the early stages because I believe that there’s every chance, if you get treated early enough, that this thing could prove more of an annoyance than something far worse. Best of luck. I’ll be thinking of you on the 12th.

  5. God bless you for sharing with the world. I was told last Friday after some blood work that I very like have PBC. I am going for a biosopy on April 12th. Thanks again for sharing. There aren’t many support groups in my area.

  6. I’m going to post more on this later, but the easy answer is there is none: PBC is auto-immune.
    Completely unrelated to heart–which they decided, after much huffing and puffing when I was younger, to leave alone (never did repair. Good call.).
    More to come.

  7. Nothing like turning 50, going from no symptoms other than some burbing to spending a mother’s day violently and repeatedly vomiting, going to hospital, having a series of tests run and being diagnosed as having ulcer….my first clue being hospitalized, blood transfusion,, etc. later I am now extremely cautious and hyperchondriac- like reading this oh my I know you had heart operation in highschool is this some how related or why is the liver acting up? Ain’t middle age grand….wow…

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