Introducing myself: I am an american and... - British Liver Trust

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Introducing myself

leanne5000 profile image
11 Replies

I am an american and live in Michigan. I just wanted to thank you all for helping me through this difficult diagnosis of cirrhosis caused by NASH. I was diagnosed back in November 2018 through fibroscan and then a biopsy confirmed it in December 2018. I have read some pretty sad stories on here but I have also read some fantastic survival stories which give me great hope. The medical issues that face me in the future scare the heck out of me and I hope that it never comes to that for me but chances are they will. I am compensated right now and I hope to remain that way for a very long time. Like Nash2, I hope to pass away from something other than liver disease. I am constantly looking to see if something new is coming down the pipeline and I have discovered this drug called REGENERATE which is to come out at the end of this year. Here is the link:

ir.interceptpharma.com/news...

I would love to hear your thoughts on this drug!

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leanne5000
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11 Replies
Ruthie2 profile image
Ruthie2

Hello Leanne, I, too, am where you are right now, only I'm waiting to have my liver biopsy done. My fibroscans came back Stage 4. I'm scared to death, but let's hope we can stay compensated for a long time!! I have a friend of mine who has cirrhosis, compensated for YEARS, from Hep C. He eats what he wants, and is enjoying years of compensation. What I wanted to let you know, is that I see my hepatologist in a couple weeks and I will run this drug by him, ok?? and I'll let you all know. I'm not a candidate for a liver transplant due to many other health issues, and my age of soon to be 70!! Where does the time go?? Please keep us posted and stay in touch!! Try to see if there are any studies in your area being done. I'm not a candidate for studies as I'm on Coumadin, blood thinner. I'm way too complicated:)) Ruth

leanne5000 profile image
leanne5000 in reply toRuthie2

I am so sorry for your situation but I hope that you have many many years of compensation! With everything that I have read on this site, diet and exercise are very important so your friend is lucky to still be compensated if he is eating anything he wants. I am too scared to eat whatever I like. I try to eat healthy and I walk 3 miles a day and I call on GOD a lot to get me through. I am going to the doctor in august and I will be mentioning this article to her. I am really wondering since it says it works on fibrosis does it still work with cirrhosis? That will be my question to her. One more thing, I have been looking at clinical trials but there is nothing that is close to me but maybe one day there will be. Please keep me updated as to what your doctor says about this drug. Thanks!

Ruthie2 profile image
Ruthie2 in reply toleanne5000

Sure will Leanne, and you too!! My prayer and thoughts are with you girl!! ruth

Bootandall profile image
Bootandall

Hey Leanne,

I'm in North Carolina now, but I'm from the Chicagoland area. My daughter got married in Benton Harbor, beautiful town, we ❤️ Michigan summers! The Midwestern diet, ah, certainly healthy isn't the first word to come to mind. Lots of meat, corn and potatoes! 😛

I have cirrhosis caused by Hep C, last six month check up I was told I have a fatty liver. I find this confusing, no one has explained it to me.

I don't know if I would rely on that one specific drug, but it is encouraging to know that they are making some progress with the epidemic numbers of people being diagnosed with fatty liver. What you linked to is for investors, and therefore not an objective assessment of the drugs' risks and benefits. Just a few of my thoughts.

leanne5000 profile image
leanne5000 in reply toBootandall

Michigan summers are wonderful but the winters are terrible. I wanted to retire to Florida but my cirrhosis has put a complete stop to all my future plans. I am only 56 but I can retire at 60 so I have a few years to go. I am way too afraid to leave what I know so Michigan winters will be in my life. I have only been to North Carolina once and it was beautiful along the shoreline. I cannot explain your diagnosis but I know my dr would have to tell me something. I actually took a whole list of questions and told her I was going to have a lightening round of questions and answers with her. She said her mouth was completely dry and she needed a drink after all the questions. Haha but I got answers. Anyways, I am really hoping this new drug pans out. There have been a few promising drugs only to fall apart in the last phase. I am keeping hope alive.

Bootandall profile image
Bootandall in reply toleanne5000

Definitely, me too. I will be seeing my liver specialist this month and will for sure ask.

Maybe you know how that is, they told me one thing (fatty liver), sent me to a dietician, now I wonder how can I have fatty liver if I already have cirrhosis, if they are progressive stages??

I was cured of Hep C in 16 weeks, miracle drugs did that. The sad thing for me is that I got Hep C through a blood transfusion, while I was having my cancer cured with miracle drugs, my platelets fell. And now I'm hoping for another miracle drug to cure the cirrhosis caused by the Hep C.

in reply toBootandall

Good Luck Boots with this month's consultancy visit !

Love Trish x

Bootandall profile image
Bootandall in reply to

Thank you! You know I have stupidly just figured out that the reason they are pushing me to lose the weight is to prepare me for transplant. I am having a hard time wrapping my head around that lol.

in reply toBootandall

Hi Boots

Wow! How I wish you were in the UK as I could have sat by your bedside and made you pee in your bed pan and pulled funny faces at you 😂😂😂😂!

I'm here if you need some support 24/7!

Loads of love and heres another hug!

Love Trish/Rock Chick

Good Morning Leanne from Shropshire in the UK,

This is just a brief note to wish you all the very best for the future as I cannot comment on your illness as I'm being monitored for PBC .

Take care my friend

Love Trish x

Bootandall profile image
Bootandall

Hey Leanne,

I lived on Selfridge AFB in 1973, on Lake St. Clair. 🛷Winters❄️ in Michigan (and Chicago) are not for wimps! I don't miss the brutal weather that's for sure. I will be 58 this year, was planning to retire at 62. But I can't find a job that I can do here, lots of competition, and a few health concerns. 🐲😛

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