I have a diagnosis of stage C cirrhosis and grade 3 varices. This was more than 2 1/2 years ago and for the most part things are going fine as can be expected. I am 40 years old. Recently I relocated to Nashville and registered with the local transplant center. They ordered an endoscopy to check on my varices. Over the past 6 months I have been try to stay very active to build my strength and endurance in an attempt to survive with cirrhosis as long as possible.
The endoscopy results are showing what I think are cherry-spots at the proximal esophagus. I have posted both pages of the images took during the testing. I wonder if you would mind taking a look and perhaps giving me some guidelines to follow? I am taking propranolol 80mg once daily for treatment but my heart rate has been in the 70's at rest so I will request an increase.
The transplant center has set a lifting restriction of 15-20lbs. However I am unclear if I still run risk of a bleed as my heart rate increases due to activities. Also if I take it easy and am real careful can this area heal? Is banding an option I should consider? I want to make sure I am doing everything I should be doing.
Here is a link to a spread-sheet that I have entered all lab data since diagnosis:
i think that you are doing everything correctly. if you are tolertaing the beta blocker i would stick with it instead of pursing prophylactic banding. i pursue the latter when the patient cannot tolerate the beta blocker. Sometime baanding the esophageal varices can make gastric varices worse and they are more problematic to treat. i think the lifting restriction is reasonable.
Thank you for looking at this for me Dr. Schiano.
On the day of my endoscopy I also had a CT Scan that revealed a small amount of ascites so I think they will agree to an increase in the beta blocker. My average BP seems to be 130/62 HR 70's.
Over the past 6 months I have been using a tremendous amount of energy lifting and carrying more than 100lbs and a lot of cardio walking up very steep hills clearing some wooded land I recently purchased for my house to be built. I have refused to allow myself to sit in a chair all day or even take naps if my life is in the least bit shortened by cirrhosis. It seems this has done more harm than good since the markings were not present during my last endoscopy. My energy level is far beyond that of others I speak to with similar circumstances.
I can clearly see how I have over-done myself with foolish hopes of being able to perform as a normal 40 year old. I can accept that and will abide by the lifting restricting you and my Hepatologist have set forth though I worry this will be a setback in the long run but it's a lose-lose situation but what about heart rate, will anything beyond a walking pace be risky as well?
Would you kindly offer your thoughts?
I am an approx 10-yr SVR from Hep C treatment - but one who foolishly thought that as long as my bloodwork and liver numbers were good, then I could "just keep on 'drinking'!!" I've faithfully had blood work and liver panels done every 6 months for the past decade...never a hint of anything wrong. Never so much as a blip in my liver numbers - AST and ALT are fine, bilirubin, albumin, GGT...all within normal ranges. Not a sign of light poop or dark pee. But I recently noticed darkening around my eyes, started losing appetite, and see the beginnings of Terrys nails. Latest blood count shows (for the first time) that my red blood count & hemoglobin have slipped, just slightly ...and are now at lowest end of normal. But otherwise I feel fine - no fatigue, good energy level, etc. and otherwise feel and look healthy.
My MD tells me that now that I've stopped drinking....and since my HepC tests remain negative (as they have ever since tx a decade ago)....for me not to worry. To continue to stay away from alcohol, eat healthily, exercise regularly...that my liver is unlikely to get any worse, and may indeed eventually get better. It bears mentioning that it took nearly a decade of drinking ..with a HepC-scarred liver no less - for me to get to this point - so it stands to reason that it would take at least a year or two (not weeks or months) of 'clean healthy living' IF my liver is to heal and these symptoms to subside. Anything that I can do by way of dietary supplementation, etc.,...I do of course want to do it. I stopped all alcohol consumtpion last Fall.
I've just been worried sick though - since I've read so many times that symptoms won't begin to appear until one's liver is pretty well destroyed. My Fibrosure test (and the APRI, FIB-4, etc)...these all classify me as not quite cirrhotic, but rather "extensive/bridging fibrosis." A series of three Ash Fibrosure testings over the past 9 months, all scored .70, .68 and .71 - stunningly consistent! (it's a 100-pt test and > 0.72 is regarded as cirrhotic). Yet I realize that all of these tests and formulas are inexact. Do you put any credence in the Fibrosure testing? My doctor says my lab results do not justify a biopsy. My platelets are 230K and my AST is 28 (ALT 24) - my platelets have been 220-240K for the past decade.
Four brief questions if I may:
Platelets are among the first things to drop once advanced fibrosis progresses to cirrhosis; would you agree with this statement?
Is it possible for any symptoms to present BEFORE advanced cirrhosis? ...i.e., could I be decompensating with platelets of 230K?
Will HepTech liver support supplements do me any good-or should I stay away from such things?
Lastly - I have appt w/hepatologist in April. Should I try to see her earlier??
Many thanks, doctor!
Dr Schiano, for anything it may be worth:
My ultrasound less than a yr ago shows an 'apparently normal liver'; HepTech has encouraged me to get a Fibroscan, which is apparently not available here in the south. I am in NYC periodically. Do I correctly understand that you have one?..and if so would it be possible to make an appt with you or your clinic to have this done?
we do have a fibroscan but frankly i do not think you need it. as long as you have stopped drinking i do not think that your liver will decompensate. Your platelets are good and ultimately your fibrosis will regress. the only concern should be for the development of HCC so you should have approrpiate surveillance. Overall keep doing what you're doing.
Dr Schiano, thank you. You're quite gracious and generous to help us on this forum. And if I may briefly request clarification on a couple of points:
[A] Will HepTech liver support supplements (PPC, silymarin, et al) do me any good-or should I stay away from such things? Since beginning them I have seen two positive developments; my urine no longer has an ammonia odor - and eye burning has subsided, but these may be coincidental and unrelated. Do you have any thoughts about these supplements?
[B] I've long heard that symptoms do not appear until some decompensation has begun; are there exceptions? I have periodic palmar erythema and cold hands - and as noted, borderline anemia (3.9 - 4.0 RBC) - albeit w/good energy level. Is it clinically possible for such symptoms to present BEFORE the onset of advanced cirrhosis? ...i.e., could I be decompensating with platelets that are >200K?
these signs I think are nothing to worry about. Your liver will not decompensate as long as you dont drink. I think there is no downside to using these herbs as long as you use the same formulation all of the time.
Thanks, doctor. My last question:
I was re-reading my prev query regarding my:
Palmar erythema, cold hands - and borderline anemia:
I was under the impression that these symptoms will not appear until some decompensation has begun.
Was I misinformed..and this is not always the case?...are there exceptions?
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