Hi wonderful Community, I had my yearly or in this case 16-month EGD(Endoscopy) today. I learned I had cirrhosis January 2021. Since then, I have lost over 10 percent of my body weight, eat healthier than I have ever eaten and have totally educated myself with Liver disease and have been a huge advocate for this beast. All my blood work is normal with the exception of platelets (48) and ALP just a bit higher and GGT which for some reason has doubled over last three months.
I exercise 45 minutes on treadmill M-F, My MELD has hovered 7-8 and now back to 7 over last 16 months. I have portal hypertension, enlarged spleen 15.1 cm, and from last EGD had grade 3/4 varices. I am on carvedilol (Coreg 6.25 mg 2x day) since February 2021.
I was hoping and praying that with my healthy lifestyle my EGD today would show a reduction in size of varices but instead now all went up to grade 4. Needless to say, I am totally bummed out. I have the best Gastro and Hep doctors in the country.
I would love to hear from those of you that have or had varices. Do the varices fluctuate in size over the months/years? Will they continue to grow until I have a bleed? My Gastro indicated at some point in future I may require TIPS procedure. I am stable now and compensated and worry complications may arise if I do TIPS. My Hep doctor has told me she would only do this if there was an exception and my vein pressure was very high. She would not do as a form of primary prevention.
I would love to hear your feedback. Wishing you all good health!
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Livmar
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I haven't had personal experience with varices so not much help but kudos to you for being in control of those things you can. The driver of those is, of course, fundamentally blood pressure. I've seen some references to people wearing continuous monitors as a way to learn what raises their blood pressure and to attempt to manage the short term periods of high pressure that we all have.
Hi Wayne, thanks so much for your feedback. Interesting, I was not aware there are continuous monitors for blood pressure. I know they exist for blood sugar. I will definitely explore this further.
I am also looking at other options such as increasing my current dose of carvedilol and perhaps looking into getting a trans jugular venogram to measure my portal pressure.
I would prefer to get these items done prior to submitting myself to a TIPS procedure which can be a wonderful thing but can also pose other dangers.
I may be losing my mind. Yesterday was rushed between meetings and I didn't want your question to go unanswered and I think I confused myself. You are correct. Somehow I got confused with continuous glucose monitors not blood pressure. I do support paying attention to your pressure but am not aware of a continuous device. Sorry for any confusion. I've had the trans jugular and it provided important information for me. Haven't had a TIPS myself many others here have, perhaps they might comment.
Hi Wayne, No worries. It is incredible that with today's technological advances we don't yet have a continuous BP monitor in the form of a wearable device such as a watch. I don't believe even the Apple smart watch provides this feature.
I was not aware that you had the trans jugular venogram. I know this is pretty invasive. Does a needle actually get inserted into the portal vein ? I would be interested to know what my portal pressure is and specifically if it is below 10, I know that carvedilol which I am taking helps bring down the portal pressure. It sure would be good for the development of less invasive techniques to measure hepatic portal pressure.
They insert a catheter into the jugular and thread that down to the liver where they do the pressure measurement. It is a very tough place to get a pressure measurement. I've had it twice. It is done under light anesthesia so you don't really know much about it all.
Your lab results and workups up sound a LOT like mine. I was relatively good from 2015/16 ‘til the end of 2021 when I developed varices. Well, relatively being the key word (I didn’t die but did go from 323 to 170). Lab work and standard scans have never shown much difference except in platelet count. Yet still I had 15 bandings done last year and on track to have more done in a few weeks. I eat better than I ever have - but still not what I should. Kind of hard to hit and pick from two diet plans diametrically opposed. My liver team has always told me to eat for my gastroparesis as long as my liver and spleen aren’t raising any red flags. I really try to do both - but that’s easier said than done. I try to eat for my liver only and I’m sick all the time and vomiting - which in turn raises portal hypertension. I eat for my gastropathy and my liver and spleen fight me and I’m still nauseous the majority of the time. Something is going to have to change - but I really don’t know what else to do. My hepatoligist, gastroenterologist, primary care and I are going to have a good long talk VERY shortly.
I wish you the best of luck. Please keep us informed of your progress and thanks so much for the post.
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