Hey, hello, my name is Jim. 42 years. Live in Holland. Earlier asked a question here but didnt properly introduce myself. Im sorry. Nice to meet u all.
Ok, I have Portal Hypertension. Bad and unexpected news, but at least now it is clear. My complaints just cover the complaints of portal hypertension (enlarged spleen, ascites and some bleeding from my behind once in a while). I am being treated with a beta blocker (carvedelol, of course no salt intake and water tablets). It pretty much seems to do the job. Other symptoms connected to liver problems: none, really absolutely nothing. I feel pretty normal actually.
Because of this last thing: a liver that gives no signs but the PH symptoms, I really cannot find anything about life expectancy and / or in combination with my PH. Can someone relate, or enlighten me in this situation? Am i just waiting for my liver to fail and do get all the symptoms (jaundice, red palms, spider veins, etc etc)? Or are there people among u guys that already live for years with only this PH problems? Thank you for time and reading my question...thanks.
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Jimmy777
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There's no easy way to say this. If you have portal hypertension with complications like an enlarged spleen, ascites & occasional rectal bleeding then you probably have decompensated cirrhosis & should be evaluated for a liver transplant. Have you seen a liver specialist for a diagnosis? If not then get a referral to see one. If you are drinking alcohol stop immediately. If cirrhosis is confirmed you won't be eligible for a transplant unless you have abstained from alcohol for a certain period.
I've seen life expectancy estimates for people with portal hypertension due to liver cirrhosis that are based on survival statistics but I wouldn't feel comfortable posting them. It sounds like you are doing okay so why add worry about how long you will live to your concerns when no-one can predict this with any certainty.
I've got a serious illness that will probably kill me in the next 2 or 3 years & I try to take it a day at a time focusing on doing positive things like meditation, reading books I find comforting (e.g. 'Journey of Souls' by Michael Newton) & living in the present. I wish you well.
thanks for your reply, indeed I stopped drinking over a month ago. It had to be decompensated indeed. I kind of figured that out myself. There has been no talk about a liver transplant. I was told to see step by step how it goes from here. Of course i do have my regular checkups and talks with my specialist. I´m sorry to hear about you condition. Thx for your reply and I wish the best for u.
Best wishes
Jimmy!
Hi Jimmy,
Welcome to our forum.
Are you under the care of a liver specialist? Only they will be able to evaluate your test results, examine you and make a specific prognosis.
Yeah as i told a moment before Im seeing a specialist. He said that they would watch me closely from here on, but not to worry too much because I feel fine. That´s kind of the reason for me to ask this question, because its all so vague. Maybe it really depends on your specific situation?! I think (I dont know for sure) I read here about a girl / woman who was already living for 7 years with PH and just working and being social and actually living a very normal life. Thx for your reaction, its already pretty different from Edward... Not saying anybody is right or wrong, just a observation.
thank you!
Grtz
by the way : Interesting link......read "Fig.83". That would be nice.
"Fig.83 - INCOMPLETE SEPTAL CIRRHOSIS: Presence of very slender septa radiating from enlarged fields toward the center of the lobule. There are distended efferent vessels around the septum. This type of cirrhosis produces only portal hypertension and no liver failure. The prognosis is very good if the portal hypertension is controlled. "
I have had a look at your linked document - albeit quickly as my ability to take in that level of detail isn’t what it used to be - thank you HE 😀. I see it contains an interesting summary of all things related to cirrhosis, as far as I can tell. It also has some interesting (aaaaghhh!) photos of the different types of liver disease - which I can’t recall seeing together like that before. And maybe don’t want to see again! <joke - poor>.
So thank you for that very interesting link and I do hope Trust1 does get the chance to have a look 👍.
I also hope your problems continue to be such that you do not get any worsening of your symptoms.
ok that sounds quite good indeed. If we talk about life expectancy that is... 20 years is a long time. You have any idea youre an exception? Well probably its just a case by case situation I guess. You probably (just like i'm doing now) , you were / are watching your diet, weight, exercise and of course no alcohol?) Thats the trick i guess (I of course don't know youre situation but ok). I hope youre doing reasonable ok right now!?
I was actually one of the 1st people to have mesh stents in Birmingham QE. They were put in by dr oliff who patented them and the time span was not known. But mine kinked and kept popping balloons when I had my venograms . Nowadays they are titanium so may last a lifetime x
I dont think its unreasonable to worry about life expectancy when you're in your early 40s. At this age many people have young children and their parents are still alive. I know those are the things I most worry about at age 37, my mum is 70 so when I fret about her catching coronavirus she tells me 'I've lived my life, watched my children grow up and marry and have seen my grandchildrem been born'. At age 42 you've barely started.
From what I've learnt portal hypertension is one of the earlier complications of cirrhosis and many people still have normal LFTs at this stage which means they are very much compensated, from what you've said about feeling well it sounds like you certainly have nothing immediate to worry about as long as youre having your varices banded if have have them at this stage. I'm by far an expert, but if you're looking after yourself you may never even need to go on the transplant list, as Newcastle said it was 20 years for them and who knows where medical science will have progressed to at that stage. Your healthcare provider surely can answer your questions better than anyone here but enjoy life, you're feeling good and that's a great sign.
Again a pretty positive angle towards my question. I know you´re not an expert but what you are saying sounds pretty logical. I don´t know if I´m decompensated or not, It makes a whole big difference if I wouldn´t be. I indeed was looking at the post from Newcastle and that was amazing. Let´s hope things (however I still feel worried and uncertain and have so many questions, but let the Dr. tell me more next time) turn out as good (or least bad) as it can get. Thank you for your optimistic thoughts. Thanks.
Jimmy, No-one ever told me anything much either, in fact I never even knew about the terms compensated and decompensated until I joined this forum - which was after I had had my TP. 😀.
Ah well hope you find out more soon Jimmy, and that it is all good - well as good as it can be 🤞.
If it helps, I’ve had PH since 2009 and lived a very full life all these years since it was discovered. I was dx’d with an autoimmune liver disease in 1998, and was evaluated for liver transplant last year (after a massive bleed and then some chronic bleeding). If you give up the drink I would say you can live a long time w PH. At least I have. Try to avoid anything that overly stresses the liver.
Hi Jim, still pretty good. Some days are fairly nasty (mostly due to excessive spleen pain tbh) but I was able to do a Christmas markets river cruise last Dec, and a bunch of other trips and things. I keep a fairly normal life aside from the days my spleen knocks the beegeezler out of me 😁🙌🏻
I have one raised vein near my bellybutton and if i press in my tummy I can feel hardish other ones but I am extremely fair and am covered in veins anyways.
It certainly doesn’t look as drastic as the pictures of the abdomen medusa veins i’ve seen online.
I don’t have any bleeding from varices or other ph symptoms and don’t know if it’s just a normal part of my body.
welcome Jimmy-feeling good's pretty important I would say-I have no real experience myself to speak of other than asking the same questions as yourself. Keep posting
Hi Jimmy
Just wondering could you see enlarged veins in your stomach?
If so was this a symptom of your portal hypertension?
Hi hopefaith, I see you posting on lots of threads trying to work out if symptoms you have are similar to others.
You would be best to go and see your own doctor and get a thorough work up to see what your situation is.
Be honest with them about your alcohol intake levels, get some tests done.
You might be worrying yourself unnecessarily. But, if there is something to be concerned about then you need to start tackling it so the sooner you know the better.
It is absolutely no good coming on a forum, searching out every wee potential symptom and building your own picture. You need medical tests, need to be seen in person and need to get all your potential symptoms looked at and identified.
I was diagnosed with alcoholic fatty liver just off bloods in April - 4 weeks later my lfts were normal.
I then began drinking at unhealthy levels again due to personal reasons and have developed (i would say quite severe) health anxiety about my liver again.
Yes I will see my gp about this I was interested to see others experiences.
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