Author Topic: Doctor tells me I will likely not have liver improvement post cure. (Read 26148 times)

Lynn K · « **on:** February 01, 2017, 03:34:09 am »

Well Bummer I had my annual liver specialist visit today and discussed my prognosis going forwards now that I am 2 years post cure.

I only see the nurse practitioner now at the liver center the liver doctor there will review my case notes if I have any changes.

So she said as I have had long standing liver cirrhosis of 9 years now and as I am not getting any younger she expects that at some point in the future eventually I will begin to develop symptoms of advancing liver disease either presenting as developing significant ascities or my greatest fear HE.

This is not the best news I ever wanted to hear. I had help out a small hope that with time my liver might improve or at least maintain status quo. But her feeling is as I am so far down the road even with cure I will still progress toward liver failure.

My comment was I have held up ok so far so I believe I will be able to continue without that happening.

Not the prognosis I was hoping for.... $:-\$

KimInTheForest · « **Reply #1 on:** February 01, 2017, 03:22:28 pm »

Very sorry to hear that news, Lynn! If I were in your circumstance, I would take it with a grain of salt (well, maybe not salt, since that is problematic health-wise).

I say that because I believe there is always hope, and that we always have the ability to change our circumstance through our own actions and decisions, and because the view we hold of our future will often define our future (i.e., it is mutable), and most of all because doctors and other medical professionals are so often WRONG in what they believe and what they tell patients.

I mean, they are working with the best knowledge available to them and within the paradigm they have been programmed to believe is the sole map of reality where human health is concerned. But that is part of their problem. They can not conceive of a patient changing the narrative through her own actions and choices. Diet, outlook and exercise are my big go-to techniques for changing the narrative. Most doctors see no validity in any of these as tools to use against major health problems. I know from repeated personal experience that they are wrong.

Best of luck to you Lynn! I believe that you CAN change the narrative. I also believe that we become what we envision or expect.

kim

lporterrn · « **Reply #2 on:** February 01, 2017, 11:08:12 pm »

Oh bummer. Your attitude is amazing. I've seen patients live for many, many years with advanced cirrhosis and managing full lives. I don't know how they do it - they are true warriors, like you.

Lynn K · « **Reply #3 on:** February 03, 2017, 03:19:02 am »

Hi Lucinda

Ok so previously I believed that now that I am cured I should at worst stay as I am a compensated cirrhotic but my liver speciality center nurse as I have said feels that eventually with time she expects I will begin to decompensate basically I am asuming even if I was 100% in otherwise perfect health.

While we did discuss I need to get some exercise and lose some excess weight she did not hold out hope that would prevent decompensation just maybe hold it off for longer.

Wondering what are your thoughts? Do I have zero chance to not decompensate with time? Is it possible to go for say another 20 years so a total of 30 years living with cirrhosis and stay compensated? Or will I find myself disabled this time next year with HE, taking Lactulose and waiting for a transplant at 60 years old?

Thanks

lporterrn · « **Reply #4 on:** February 05, 2017, 07:55:12 pm »

I think you will find the answer to many of your questions here: http://www.hepatitisc.uw.edu/go/evaluation-staging-monitoring/evaluation-prognosis-cirrhosis/core-concept/all

My thoughts:
1. There are exceptions. Aim to be the exception but don't expect to me.
2) Strive for the best health you can. This is a personal choice. It is a high priority for me, because I can see the payoff. But we are all different. Do what you can, do it wisely, and don't chastise yourself when you don't meet your expectations.
3) Be diligent on cancer scans.
4) If you start to compensate, if you can, move to a state that has a short transplant wait time and high post-transplant survival rate
5) Consider a liver donor, should there be a generous angel in your life (this is complicated and potentially dangerous for the donor)

Keep in mind, that if you decompensate, you can still live a long time. The real turning point is a bleeding varice.

Lynn K · « **Reply #5 on:** February 05, 2017, 08:39:51 pm »

Thanks for the link what I read most related to me is

"Cirrhosis can remain compensated for many years. The transition from compensated to decompensated cirrhosis occurs at a rate of approximately 5 to 7% per year. The median survival of compensated cirrhotics has been reported to be 9 to 12 years."

I was diagnosed 9 years ago.

They went on to say

"Patients with HCV-related cirrhosis who undergo treatment and achieve a cure have a dramatically decreased 10-year risk of all-cause mortality (Hazard ratio

= 0.26), liver-related mortality or transplantation (HR = 0.06), hepatocellular carcinoma (HR = 0.19), and hepatic decompensation (HR = 0.07)."

1. aim to be the exception.

Sure exceptional the rule but I am still not sure what my odds are of decompensating in my situation. I am in the median survival range so 50/50 after 9 years what does that mean that I have a 50% chance of being ok?

Since I am cured my hazard ratio of decompensation HR= 0.07 what does that mean?

My nurse practitioner said she expects at some point I will begin to decompensate but I am not seeing this as a guarantee only a 50/50 or 5% to 7% a year.

Always diligent about my testing I am one of the most compliant patients I remind them lol.

How is Washington state for wait times moving is not an option. No living donor options my brother is 70 and other than that just 2 adult children they all live in NY.

I thought also HE is a first manifestation of decompensation along with bleeding varicies. I have an annual upper EGD which they now say could be less frequent 1 or 2 years instead of annual.

Just trying to understand what are the odds I am up against? But perhaps that is impossible to answer because no one really knows?

Maybe I should change my care to University of Washington they have a lot of good information on their web site and many expert doctors. Right now I have been going to Swedish Liver.

Yes I understand that even after decompensation I can live many years but if I decompensate that would be the end of my current dreams. I am less concerned about my life and more so about my quality of life.

Lynn K · « **Reply #6 on:** February 05, 2017, 08:49:43 pm »

Just to add I am a MELD 7 due to INR of 1.1 and Child A with 5 points

lporterrn · « **Reply #7 on:** February 05, 2017, 10:37:50 pm »

With that low of a MELD, you can stack the deck in your favor. If anyone can do this, it's you. Let me know if you want any help or support.

BTW, I know of 2 people who were sitting where you are, and reversed cirrhosis. It's possible.

Pete · « **Reply #8 on:** February 05, 2017, 11:09:38 pm »

Hi there Lynn - I read through your post. Sorry to hear that things aren't progressing in the desired direction at the moment. I'm in the same boat as you with the cirrhosis. Same MELD / Child A (5 pts), plus I've even got HCC surgical scars to go along with that. I'm cancer free almost one year later and may even have the virus licked in another month God willing. At this point, life is good!

You mentioned considering changing your liver care provider. Why not do just that to mix things up a little in 2017? Not that the outcome will necessarily change, but I'd bet you'll feel a little more upbeat about things. Sounds like your NP is "matter of facting" you with stats, decomp progression, mortality rates, ad nauseum. Geez... Nobody wants to dwell on that stuff. You've got nothing to worry about right now IMO. Two years virus free is awesome Lynn!

I think you need a new and fresh perspective with some positive vibes for a change. I live in the Seattle area, changed my care provider about 2 years ago. Made a huge difference in how I approach all of this unpleasantness.

If interested drop me a PM Lynn K, I would be most happy to provide you the name of my Liver Doc for your consideration. I think you'll like her, and the entire hepatology team over there at VMMC (clue...)

You do so much to help everyone here. I'd like to think I could be of help to you in some way Lynn. What say you?

Best,
Pete

lporterrn · « **Reply #9 on:** February 06, 2017, 02:08:09 pm »

Pete - this is why I love the Hep Forums. Thank you!!!!

Lynn K · « **Reply #10 on:** February 07, 2017, 12:56:51 am »

Quote from: lporterrn on February 05, 2017, 10:37:50 pm

With that low of a MELD, you can stack the deck in your favor. If anyone can do this, it's you. Let me know if you want any help or support.

BTW, I know of 2 people who were sitting where you are, and reversed cirrhosis. It's possible.

Which is why I was taken aback by my NP saying she expects that at some point I will eventually decompensate because I have cirrhosis even though I am cured of hep c. I mean I am ok with not improving although I hold out some hope I might improve but I had believed that my risk of progression was very low at least as long as I don't get HCC. That is what I am trying to get my head around why does she believe I will still eventually decompensate?

Thanks Pete I sent you a msg

lporterrn · « **Reply #11 on:** February 07, 2017, 10:35:00 am »

Did you see this: https://www.hepmag.com/article/among-cirrhosis-curing-hep-c-multiple-health-benefits

Lynn K · « **Reply #12 on:** February 07, 2017, 04:30:22 pm »

Thanks hadn't seen that. When I followed the link for the original study I found other encouraging studies as well

https://www.ncbi.nlm.nih.gov/m/pubmed/27641509/

Eradication of Hepatitis C Virus Infection in Patients With Cirrhosis Reduces Risk of Liver and Non-Liver Complications.

I see a lot of information that differs with what my NP said hummm

Well at least I have hope again that I can at least stay where I am and not get worse. I need to do my part of course but looks like better news than I had earlier.

Thanks

Pete · « **Reply #13 on:** February 07, 2017, 11:00:37 pm »

Great link Lucinda! Thanks for sharing.

Hey LynnK, I like your avatar! just happened to notice, very cool ;-

Pete

Lynn K · « **Reply #14 on:** February 07, 2017, 11:36:27 pm »

Thanks

Here is a link to the entire picture

http://cathumor.net/wp-content/uploads/2015/09/cat-humor-i-should-become-pilot-best-decision-ever.jpg

CureSeeker · « **Reply #15 on:** June 25, 2017, 01:07:18 pm »

I know this thread is old, but I've been away for a while due to family obligations, and feel compelled to add my 2 cents worth in here.

1. A Doctor did not say this to you, LynnK. A Doctor may not be aware it was ever said. A NP is NOT a doctor or specialist of anything, as I'm sure you are already aware. Disperse the seeds of negativity she - for whatever reason - tried to plant in your psyche. Throw them away. You never wanted them, didn't create them, and don't need them.

2. A Specialist in Hematology and Hepatology (Director of Gastroenterology at our local hospital) told my husband the exact opposite. They told him that even though his condition was bad, once he was cured of the virus, and given enough time, his cirrhosis WOULD reverse itself. He did not meet with success in killing his dragon, but YOU are well beyond that huge step.

Given what this specialist said to my husband, as long as you have time on your side (i.e. nothing else kills you first), there is no reason to believe you will not improve. The hard part - defeating the dragon - is behind you.

The last thing anyone fighting liver disease needs is a 'Negative Nelly' on their team, and hopefully this NP was just having a very bad day and therefore exercising very bad judgement when speaking to you.

You have always been an inspiration to me on these forums, and many others as well. I agree with those who suggest to change teams if you can, or, at the very least, don't let this person bring you down and effect your mindset. Get on a list for a transplant. Many people have successful transplants from people with no obvious relationship to themselves.

As the song says, "Don't let it bring you down. It's only castles burning. Find someone who's turning, and you will come around...."

Stay the proactive warrior you have always seemed to be. You have achieved too much to do otherwise! *hugs and kisses*

lporterrn · « **Reply #16 on:** June 26, 2017, 02:08:26 pm »

I am a huge believer in the power of positive thinking. However, doctors and NPs are trained to tell the truth, and I think there is great power in being positive in the face of reality. As for Lynn and others, some people have progressed to the point that the liver doesn't regenerate. To me it is a miracle that people like Lynn remain positive in the face of a poor prognosis. I don't see Lynn as giving up hope; I see her facing her diagnosis and planning her life according. She certainly isn't feeling sorry for herself as she goes about her life giving generously to others. She is a warrior because she faces adversity and doesn't pretend it isn't there.

Lynn K · « **Reply #17 on:** June 28, 2017, 01:27:18 am »

Hi cure seeker and Lucinda

Sorry been super busy took me a little to get back to respond.

Thanks for both your kind thoughts

I will be seeing my specialist that I was seeing previously she moved from Swedish to UW Medicine and I am following her there. My appointment is in August.

I wouldn't go so far as to say I am optimistic in the face of adversity maybe just to dumb to know better?

I will believe I am in decline if or when I have symptoms in the mean while I am just living my life. I just don't know anyway else to be. What am I supposed to do just stop living and wait for the worst to happen? I just can't see any point to that.

So for the moment I will keep on keeping on and hope nothing tries to come and knock me down. And if trouble does come my way I will continue to fight back as long as I can.

But so far as I know right now with cirrhosis for officially 9 years 6 months steady as she goes second star on the right and straight on till morning......

CureSeeker · « **Reply #18 on:** June 30, 2017, 05:52:26 am »

Quote from: Lynn K on June 28, 2017, 01:27:18 am

But so far as I know right now with cirrhosis for officially 9 years 6 months steady as she goes second star on the right and straight on till morning......

It's the only way to travel.

*thumbs up*

I'm sure you knew, long before this was dropped on you, that you were beating the odds, lol.

Julia Dee · « **Reply #19 on:** August 31, 2017, 02:07:33 pm »

Quote from: lporterrn on February 05, 2017, 10:37:50 pm

With that low of a MELD, you can stack the deck in your favor. If anyone can do this, it's you. Let me know if you want any help or support.

BTW, I know of 2 people who were sitting where you are, and reversed cirrhosis. It's possible.

Can you share what they did to reverse it?

Lynn K · « **Reply #20 on:** August 31, 2017, 02:16:13 pm »

The was to improve cirrhosis is to take away the injury cause. For those with hep c the way is to first cure hep c and then be kind to your liver.

Other than that we wait and hope.

I changed providers and went to visit my old specialist last month. She was much more positive on my prognosis going forwards but I still need time to see if I have any improvement with time.

My odds of decompensatinf and needing a transplant now post cure is greatly reduced as are my odds of developing HCC (liver cancer) beyond that it is wait and see.

But really even if I should ever have a decrease in fibrosis it won't change anything I will still need to be careful for my liver for the rest of my life.

The important thing is curing hep c and stopping the damage

Julia Dee · « **Reply #21 on:** August 31, 2017, 02:17:21 pm »

Quote from: Lynn K on June 28, 2017, 01:27:18 am

Hi cure seeker and Lucinda

Sorry been super busy took me a little to get back to respond.

Thanks for both your kind thoughts

I will be seeing my specialist that I was seeing previously she moved from Swedish to UW Medicine and I am following her there. My appointment is in August.

I wouldn't go so far as to say I am optimistic in the face of adversity maybe just to dumb to know better?

I will believe I am in decline if or when I have symptoms in the mean while I am just living my life. I just don't know anyway else to be. What am I supposed to do just stop living and wait for the worst to happen? I just can't see any point to that.

So for the moment I will keep on keeping on and hope nothing tries to come and knock me down. And if trouble does come my way I will continue to fight back as long as I can.

But so far as I know right now with cirrhosis for officially 9 years 6 months steady as she goes second star on the right and straight on till morning......

I have been a reader on here for a long time and your posts have always been helpful and inspirational. My husband was diagnosed with compensated cirrhosis in 2014 and was cured of hep c in July of 2016 after 6 months of Harvoni. We go through the VA for care. They really give out little information. They told him that if he takes care of himself, has a decent diet, doesn't drink or consume anything bad for his liver that he should be OK indefinitely. They never say that at a a certain point decompensation is inevitable. My best wishes and thoughts are with you!

Julia Dee · « **Reply #22 on:** August 31, 2017, 02:20:08 pm »

Quote from: Lynn K on August 31, 2017, 02:16:13 pm

The was to improve cirrhosis is to take away the injury cause. For those with hep c the way is to first cure hep c and then be kind to your liver.

Other than that we wait and hope.

I changed providers and went to visit my old specialist last month. She was much more positive on my prognosis going forwards but I still need time to see if I have any improvement with time.

My odds of decompensatinf and needing a transplant now post cure is greatly reduced as are my odds of developing HCC (liver cancer) beyond that it is wait and see.

But really even if I should ever have a decrease in fibrosis it won't change anything I will still need to be careful for my liver for the rest of my life.

The important thing is curing hep c and stopping the damage

Thank you for the update. I appreciate all the time you've spent informing others.

Lynn K · « **Reply #23 on:** August 31, 2017, 02:22:10 pm »

Hi Julia and welcome

Really there is not much to say or do as his doctors have advised be kind to your liver and do the required follow up testing.

Has he had the pneumonia shot? If not he should do that as we are in more delicate health. We also need to have our flu shots as early in the season they become available every year.

Best to you both

Julia Dee · « **Reply #24 on:** August 31, 2017, 02:36:12 pm »

Quote from: Lynn K on August 31, 2017, 02:22:10 pm

Hi Julia and welcome

Really there is not much to say or do as his doctors have advised be kind to your liver and do the required follow up testing.

Has he had the pneumonia shot? If not he should do that as we are in more delicate health. We also need to have our flu shots as early in the season they become available every year.

Best to you both

He has not had a pneumonia shot. I will be sure he asks about that at his upcoming doctor's visit. Thanks again!

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