Hep C Discussion Forum

Sydhanrahan · Guru

RE: Cirrhosis - What prognosis have you been given by your Doctor

Canuck · Guru

syd, I think you are RIGHT ON. Not only about your important bits of armour - humour, blue skies, and bitter pills, but as well, in your good understanding of your balancing act, and you should listen to yourself more, as you are pretty savvy - the parts you make plain to us? - like .... where you WERE at and where you ARE going (hope you noticed my emphasis on "WERE" at and "ARE going"?), with all those stellar results you post showing the way thus far. Like many, with acities, your balance will have to watched/"managed", but with these kind of improvements shown thus far, and ultimately, with the decimation of your virus, this will be your ticket and all will follow suit cooperatively (that is what I believe). I, for one, am very glad your rear end works mighty fine, the rest will improve in time. Perhaps treatment itself is making more work for your kidneys, (maybe a mallini ques.) but taxation in the short term (all systems being forced to compensate), will be worth all the trouble of the watching and balancing. Me and my doc were also talking about that (the "forgiveness" of hard-worked kidneys), being that I thought mine were a somewhat historically taunted and sclerosed pair - he said, that that organ (not unlike the liver) is forgiving over time as well. C

Sydhanrahan · Guru

Hi guys, revealing my scientific ignorance here but I developed ascites in November 2015. This automatically places you in decompensated cirrhosis stage. The doctors at this time were reluctant to give me a use-by date but I gathered from hushed tones that it was less than two years unless I got rid of the hep c. I had become an occasional social drinker in about 2013 and gave up entirely in 2014.

The specialist said that my decline had been more rapid than she expected, but what she has learnt is that surprises are common in dodgy liver area. what seems to be the case is that no two sets of blood results follow a set pattern. ( I hope those more knowledgeable will contradict me if I'm talking out of my rear end - which for what it's worth, still seems to work).

Since I began treatment on 7th Dec 2015, I have been paying attention to the few bloods I do understand. I know that Alt and Ast indicate liver inflammstion. Mine have gone from Alt 220 to 29 and Ast from 409 to 51. I'm not sure if that's fast enough or not as most people post levels which seem incredibly low to me. All I hope is that the drop in these two numbers shows the liver is far less inflamed.

Now for the others. Bilirubin which indicates jaundice has gone from 35 to 9. I'm happy with that. Urea was 4.9 and is now 11.4. Indicates struggle to get diuretics and fluid intake working together. Creatinine is also worse: was 69, now 95. I think for same reason. Another one I remain worried about is albumin which was 27 before treatment and is still only 37, as this is the one that indicates ascites and it looks as though this will be a slow long term improvement if the established pattern continues. On the other hand a lot of people say that low platelets indicate cirrhosis yet mine weren't too out of whack at the beginning -270 and now 320. I know INR indicates clotting rate but it isn't on the tests I'm looking at, although I think it's improved as I get fewer bruises and nose bleeds.

I need to have the test to see if I have oesophageal varices, but can't make myself yet. Just want to live in la la land on that one for a while. I know finding decompensation in areas other than ascites is going to be a confronting pill to swallow. (Maybe apt metaphor to have stumbled upon as we're already swallowing enough bitter pills literally ). Ditto with bone density.

And then finally, regardless of initial moves during treatment, are we SVR at the end.? How does that account for the fact that even after SVR some people go into a steady decline? they say they believe there's a genetic link between improvement v ongoing decline.

What I would finally throw out is that if you have reached compensated, and are not a closet drinker, your chances of having some years of a good quality of life are pretty high. if you're decompensated, it's more of a heads or tails thing. It's marvellous to have examples like Malcolm, who have come back from the brink, but may be those who've had a serious tail spin neither can, nor want to, post here.

I am beginning to realise that obsessing about it won't change the outcome. That outside, now, the sky is blue. That the best piece of working armour I have is my sense of humour. And that I am very lucky to have got old enough to see my beautiful grandchildren growing and developing every day.

My friends here, are v important to me too.

Syd.

Canuck · Guru

Ya tig, good links.

I think (and google up things like) ...

Semantics and law of averages (and, oh-so-many variables to skew things up) are at play here. What things are written in stone? Much of life is guided by ... well, "guidelines". Good guessing/speculation makes up "prognosis" and/or "life expectancy". 1 year, 2 year, 5 year, 10 year and/or whatever the heck "long term survival rates" are, can always be taken with a grain of salt. "Life expectancy" can be a whole dif. kettle of fish. To me "quality of life" is the outcome I would love to see be predicted. Another near impossible thing to measure, average, quantify in a fool proof accurate fashion.

The following relates to terminology used in "cancer" diagnosis (not cirrhosis per say, but relates to the "measuring" lingo they use:

... "statistics are averages based on large numbers of patients ...cannot predict exactly what will happen to you .. no two patients are exactly alike and how well treatment works also varies from one person to another ... ask your doctor about your prognosis, not even your doctor can tell you for sure what will happen ... hear doctors use the term 5 year survival ... does not mean you will only live 5 years ... relates to the number of people who are alive 5 years after diagnosis ... doctors follow what happens to people for at least 5 years (HA!, or NOT!, or for one yr., or 2 or 5 or 10 yrs., or for life, etc.!) ... small chance of the cancer coming back more than 5 years after treatment .. doctors do not like to say these people are cured because there is that small chance ...so they use the term 5 year survival instead." .... So, skewed law of averages, good guessing, somewhat grain-of salt (not stone) terminology (I think).

Just ask an insurance agent or an engineer about rounding up, down, or off, risk averages in a healthy world ...

... "Mathematically, life expectancy is the mean number of years of life remaining at a given age, assuming age-specific mortality rates remain at their most recently measured levels.^[3] It is denoted by $e_x$ ,^[a]which means the average number of subsequent years of life for someone now aged $x$ , according to a particular mortality experience. Longevity, maximum lifespan, and life expectancy are not synonyms. Life expectancy is defined statistically as the average number of years remaining for an individual or a group of people at a given age. Longevity refers to the characteristics of the relatively long life span of some members of a population. Maximum lifespan is the age at death for the most long-lived individual of a species. Moreover, because life expectancy is an average, a particular person may die many years before or many years after their "expected" survival. The term "maximum life span" has a quite different meaning and is more related to longevity. Life expectancy is also used in plant or animal ecology;^[4] life tables (also known as actuarial tables). The term life expectancy may also be used in the context of manufactured objects,^[5] although the related term shelf life is used for consumer products and the terms "mean time to breakdown" (MTTB) and "mean time between failures" (MTBF) are used in engineering." ... smile C.

Shadowfax · Guru

Thank you Tig,

Very good article!

Enjoy the rest of your evening!

SF

Tig · Admin

Here's a good article out of Baylor in Texas that does a good job of explaining cirrhosis. If you interpret it the same way I do, I think you'll conclude that the 5 year discussion, deals with decompensated cirrhotics. I still believe that the 5 year hypothesis is when they have run out of options, including transplantation. It's simply a good idea to promote testing for everyone with LFT elevations and especially for at risk people. If we can provide (encourage) early detection, the incidence of advanced disease will plummet.

http://www.sw.org/medicine/gastroenterology/cirrhosis

Shadowfax · Guru

Thank you for the link and you feedback!

It makes sense to me but I was just curious as to the consensus by others who have been given a prognosis by their doctor.

I was also told by my NP, who is very well versed on the liver (I am lucky to have her) that to this day, they are not quite sure why some people are compensated and others not. It is a very fine line.

Dave, Yes the words did not use "at least" and I agree, huge difference. I do know that since I am compensated, once I slay this dragon, my chances of staying that way for a long time is very good. I did not drink before or do anything to hurt my liver and I certainly would not now when I may have been given a 2nd chance at prolonging my life.

I suppose statistics are all they can go on but even then they would be prior to these new protocols coming out that will change those numbers dramatically I would like to believe. I was just told this past week that with the way the treatment is going with HVC that liver transplants will more than likely become mostly based on fatty livers.

Thank you once again for your feed back and hopefully others might chime in with numbers they may have been told.

Cheers.

Tig · Admin

Oh I agree, there shouldn't be much doubt that a compensated cirrhotic isn't really limited in their number of years, provided some common sense precautions are taken, which includes treatment, no alcohol and continuing care by a specialist. The advances in care for decompensated cirrhotics has improved greatly as well. There are so many people that live with undiagnosed cirrhosis for years and years, to place a 5 year limitation on lifespan doesn't seem logical with the different advances in care.

Linuxter · Guru

Are you sure they didn't say or mean 75% of people will live at least 5 years ...

... there's a HUGE difference.

That said, we've already seen our own Malcolm have his liver regenerate to drop a stage to F3 in just 3 years.

There are so many variables, if a patient gets rid of the virus, changes diet, exercises even changes the way they think and look at life via whatever means works for that patient then I think you can make a BIG difference and prove those docs wrong.

Statistics are nice to throw out there but I don't think even the best doctors out there can accurately tell you something like that. Statistics may include large number of patients that consume large amounts of alcohol, some may not even have quit, many, no doubt continue eating as they have for decades and some decide not to exercise at all ... my point is that I don't put much credence (not the Clearwater Revival kind) in statistics unless they are specifically tailored to a controlled group of individuals.

I refuse to believe that you can't beat this thing and go on living a comfortable life (just as our friend Malcolm is doing smile ).

Your Friend,

Dave

Tig · Admin

SF,

Cirrhosis is generally referred to as ESLD, but the term is rather ominous in my opinion. It sounds like the "end" and there's no way back. That's not always the case, as we've already seen fibrosis regression and a return of people here to a non cirrhotic stage post treatment.

Here's an interesting article on it, actually there is a physician and patient explanation of cirrhosis. http://patient.info/doctor/cirrhosis-pro

Once the causative factor has been resolved or stopped, progression usually, but not always, stops as well. You will have to keep a regular schedule to monitor your liver for HCC because of the original diagnosis of cirrhosis. If you or anyone sees fibrosis regression to pre-cirrhotic stages, your doctor may decide to change the frequency of those exams. That's entirely up to you and your doctor, but periodic fibrosis staging is required to monitor that, as is routine ultrasounds to monitor the HCC risk.

Shadowfax · Guru

I realize this is open and many factors would change but in general I would like to know what you have been told regarding prognosis of your cirrhosis or in general.

I am compensated but was told I have ESLD (End stage liver disease) so I am wondering if some Doctors consider any cirrhosis to be that. This was a specialist at the premiere liver clinic at the hospital in Toronto.

When I asked what the progonis was after being told I will start Harvoni for my HCV, The answer I have heard from two different Doctors is: 75% of people will live five years.

I do not know whether this factors in the chance of getting liver cancer or not.

I have had Hepatitis both B and C for 45 years and when I was shown the picture of the liver and the end part being cirrotic, the middle part of that end was pointed out and I was told I was there. There has only ever been fibroscans done.

Thoughts and experience are welcomed and appreciated.

I hope you are all having a great weekend.

Cheers

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