I've had a pretty rough night, mostly anxiety and feel like I'm on the rollercoaster again.
I met the registrar yesterday who confirmed that my liver is Cirrohtic... I had a fibro scan of 16.6kpa last year and after the last specialist appt had told me it was inconclusive.
I guess I knew, but was feeling pretty good and sleeping well and walking. No nasty symptoms yet.
I asked about Harvoni as it is the medication I want but have to wait to be put on a drug trial... In the next few months.. Harvoni is not funded here, so it will not be Harvoni. It all kinda sucks because my job is pretty full on and I have a massive work plan this year, I've been so excited to tackle. (. I set up recycled designer boutiques for women's refuge.. anyway...)
Just sucks to have this news on xmas eve here. I needed to be away for work suddenly so I rescheduled and they fit me in.
I know it's not the end of the road, and reading all of your stories of bravery, heartache, triumphs, and challenges for yourselves and for your loved ones has made me stronger and more informed about the pathology of the liver, and what that all means.
The hardest thing is not having ay idea what this next part might be like. It's weird because yesterday I wasn't as emotional but the news woke me up last night... Crying a couple of times.
Hug yourselves, look after yourselves, and thank you from this kiwi who you have all helped immeasurably,
Love and light for a safe and happy holiday season,
Stephanie
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Estiebargle
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You will be OK Stephanie. .All this news takes time to sink in..cirrhosis can take yrs in the early stages to develop. .although it does have a lot of symptoms for some others cope OK ...
Why are you not being offered treatment? ..Are you in the UK? If so you should be offered treatment. .I think Harvoni is not offered to all genotypes but an alternative non Interferon based treatment is almost just as effective.
Don't worry so much I'm sure you will treated at some point!
Don't let this waste your Xmas..try and be positive. .as I always say Happy days are coming and hopefully you will treated soon!Xx
Sorry to hear the bad news. I didn't have hvc but had a liver transplant last year. For the time being at least I would try and focus on getting on with your life. It took me about 15yrs from confirmed cirrhosis until transplant. There probably wasnt a day went past I didn't think about it. Like a dark cloud, or black dog.
Anyway it's great you found this site. Lots of info and support. It's far from game over, but a life changer for sure.
Hi both of you....I was diagnosed with cirrhosis 3 years ago and am ok at the moment ....fingers crossed...but your comment about a future transplant being a dark cloud over everything resonated with me so much ! It terrifies me and its what I wake up in the early hours stressing about it ....self inflicted in my case though :/
Hi Stephanie, I think I can empathise with you, because I have had very similar feelings. I have pbc, was diagnosed nearly 10 years ago. This year they have confirmed I have cirrhosis, and portal hypertension. I feel very anxious, and often panicked about what the future holds. I have two boys 15 and 12 and my husband is doing everything as I have such debilitating fatigue. I haven't worked for 5 years, which is very depressing to me as I studied hard to qualify as a midwife, and then do a degree in public health. Now I feel worthless and socially isolated.
In 2010 my sister died due to a massive GI bleed. She was an alcoholic, seemingly relatively healthy. Her gp didn't know she was an alcoholic. Her stomach swelled up, and I advised she should go to the Dr, she waited a week, by the time she went she had acute alcoholic hepatitis. She had a massive bleed, admitted to ITU, I then watched her deteriorate, her legs and feet went black due to drugs they were using to stop bleeding. Her kidneys failed, she had respitory failure, her brain was affected. She fought it all, and after a week she was out of ITU, and looking like she may recover enough. Then she had another bleed, and this time her heart couldn't cope. She was only 41, her life was stolen by a terrible illness, not as so many people say, a life style choice, nobody chooses to be an alcoholic!!
Anyway, I'm scared and anxious about what might happen to me. Of course everyone reassures me that my illness is very different, as I'm being kept an eye on, and I'm more healthy than she was because I don't drink. But its hard to convince yourself of that.
Sorry I meant to be sympathising with you and instead a rambled on about my woes. I only mention this because I understand the nights of tears and panics. So many stories on here of people who go for years with cirrhosis, and have no additional difficulties. Then there are those who seem to have all the complications and go on for years with debilitating illness, but are not quite bad enough for tp. Then those who very quickly deteriorate.
I have had a transplant assessment, as my Dr felt my symptoms warranted tp for quality of life. However as my worst symptoms are fatigue, that will not be cured by transplant, as it is due to the auto immune condition, rather than the liver. So at least I know they have agreed I will be a good candidate for the future. I'm trying not to think of that.
I hope you get the treatment you want, and that it clears your virus. I've seen great posts on here of people who have cleared the virus. You have a good chance of clearing it and even with cirrhosis, as long as you have some functioning liver you can live quite well. I really hope that is the case for you.
Try to think as positively as you can, when a dark thought is in your head just try to think of something that makes you really happy. So you don't start down the negative road. This is advice I give to myself as well, and I know its not easy. We just have to focus on the good things we have, try to make the best of things.
Wishing you all the best for Xmas, and the new year.
Don't beat yourself up too much,it's not great news but however,neither is it 'omg,I better throw myself over a cliff stuff',either. Watch the booze-cut it out.Don't eat red meat,beware salt,and processed crap etc.If you don't get harvoni,you will get something similar-your lucky,like me,you live in a comparatively enlightened part of the World.Harvoni will-hopefully(me,I'm not convinced),kill hep c,remember tho,cirrhosis will progress.How fast-is totally,up to you.good luck+happy Xmas.
Sound's like you have come along way to me, I have cirrhosis due to drug's, alcohol and hcv. I was diag in 2012,since then I havnt touched anything and recently just finished my Harvoni and Ribavirin treatment. Life is not over for you. With abstinence and some T. L. C you can learn to live happy. I was inches away from not being here, they told me in October that year that I wouldn't see Christmas, I'm still here and feel better in so many way's. Merry Christmas. Xx
Hello. I was told I had early cirrhosis and a severe fatty liver. I've been sober for over 3 years now since diagnosis. My score went from 12.7 kpa n cap 328. Down to 4.6 kpa n cap 168. So back in normal range. It's total abstaining and losing weight n eating healthy. This is key now. So can be done. Wish u well Chris
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