Hi there. I was diagnosed with Cirrhosis recently after getting jaundice in December. I'd previously had sickness, no appetite, huge weight loss etc. The jaundice forced me out of my denial and straight to hospital!
I haven't had a drink since and have regular blood tests. I've had the usual symptoms, muscle wastage, looking 9 months pregnant, insomnia and restless legs.
This has all gradually improved, as have my bloods. The thing is I had a fibroscan of 62. With everything else seemingly improving I still feel I'm on a death sentence. I know it can't be cured, just managed but I made the terrible Google mistake and got anything from one month to 2 years??? I'd hoped for a bit longer!
Sorry for such a long post, I'm panicking and have seen how wonderfully supportive and helpful you are to each other on here!
Ali x
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Alibelle
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Welcome to the forum. I have absolutely no doubt that you will very soon have many messages of support.
There are several publications on our website that you might want to look at so I will give you the link to all the publications then you can choose which you think would be most helpful. We also have a free helpline run by liver nurse specialists if you would like to talk to someone as well.
I presume you must be under the care of a Hepatologist (or similar) at your Hospital? If not you should be! It really is them that you should talk to as well as following Trust5’s advice.
Although I had cirrhosis for 4 years I don’t believe I ever had a fibroscan - unless it was during one of the HE episodes! So I can’t comment on your particular result but do know that I had cirrhosis for at least 4 years before my transplant - so that is at least one of us already way past your Google estimate!
I don’t see anything wrong with Googling per se but try and stick to the NHS websites and I also find the American website The Mayo Clinic excellent.
The one thing you mustn’t do is panic, please. Just talk and follow Trust5’s advice and talk to your Hepatologist. It will help no end, honestly.
Hey it’s great that we both said the same thing 😀👍. In any case I was probably waffling as usual..
You blame HGTTG and I blame Dad’s Army lol 😀
Yes we had it but made it and it feels GOOD!! And neither are we alone by any means! Yippee hehe.
When I was in the Hospital after the TP this kind Ward Visitor came and spoke to me. He showed me a photo of him from before he had the TP. I kid you not he looked like a POW from the worst of the camps. In fact his before and after photo is in the TP Assessment waiting room at the QEHB. That photo was taken 17 years ago! Just shows...
I am being very well looked after by the Hepatology team at my local hospital. Luckily for me this happens to be the John Radcliffe! I also have amazing parents (I'm 43, they're in their 70s) but I don't want to burden them too much with my worries. I'm so glad I found this site!
I'm so glad you have had a successful transplant. It hasn't even been mentioned to me, but I'm wondering if it's perhaps inevitable down the line.
Hi Ali, in the words of the hitch hikers guide to the galaxy...DONT PANIC!!
When I was first diagnosed with pbc three years ago now, I had a fibroscan. The result was 75. The limit is ......75!! The nurse who did the test looked devastated and said ‘I’m so sorry!!’ I replied, that I already knew I had it and she could stop crying now!!!
I’m not going to say the cirrhosis journey is easy or fun, Miles has already hinted that it can send you doolally at times, but it’s completely survivable. Both miles and I have had transplants and are out the other side.
In your own words you made the terrible google mistake, ok, we’ll forgive you that one. Here you will find actual real people who you can pinch and prod (from a distance) who have all had a real issue with cirrhosis or liver ‘problems’. There is plenty of advice to be had here, and lots of positive outlooks. Hey, I wouldn’t be here if it wasn’t for my donor, but now I’m typing to you!!
Do what you’re already doing, say goodbye for ever to the booze, develop a healthy diet, sorry no salt or McDonald’s (other takeaways are available - and should also be avoided!!) and listen to your doctors. You’re gonna get a lot of people giving you information, buy a notebook and pen.
Really do wish you luck in your journey, do feel free to stop by and whinge when it feels really crappy!!
Also remember the blt helpline (no not the sandwich!!)
Aaagh just wrote a reply and lost it! Thank you Andy. You and Miles sound on great form after transplants! I was very surprised how many people on here have had them.
Cutting down on salt has been hard. NO CURED MEAT😢 But a small price to pay.
I will be doing much pinching and prodding now I'm here!
I have had cirrhosis for 30+ years...i am 54..was discovered when i was 23 but said to be there longer. I eat well, exercise ALOT (low key walking, hiking, tennis, gym), avoid anything toxic to liver, and thank god this disease does not have daily pain. My cirrhosis has been stable as i have AIH and the drugs have kept it in check. good luck and be optimistic. the liver is an incredible organ!
Hi Ali, as I said in my reply yo C1J1 which you liked...thank you, it's not a death sentence, you just have to be really strict with yourself, and keep to your plan for clean living. I know it's tough at the start, but once you get into the routine, it gets easier. I was fortunate, I had no problems giving up the booze, and wish I had given up before I had damaged my liver.
Please try and avoid Dr Google if you can, he can be good for somethings, but prognosis isn't one of them😊
I was lucky too. The jaundice snapped me out of whatever denial I was in and I gave up overnight. I'd been so worried about how hard it would be, side effects etc that I'd never seriously considered giving up before. Like you, I now wish I'd done it years ago!
I was given 3 months, 10 months and 8 days ago (not that I’m counting). I immediately stopped drinking and I was drinking A LOT! I was immediately admitted to hospital where I received all sorts of IV drips, had an ascites drain (8 litres) and eventually returned home. I looked like a POW, no strength, grey and resigned to imminent departure from this mortal coil.
As I said, I stopped drinking immediately I was diagnosed and following hospital changed my diet, limited sodium and potassium and restricted fluid intake to 1.5 then litres per day (Doctors orders and the fluid was difficult). I was prescribed Lactulose and Spironolactone. My bloods improved month on month.
To cut a long story short, my bloods are now back to normal, my liver is normalise considering I will always have Cirrhosis, and my Ascites has gone. I go to the gym 4 days a week and my life has massively improved. For those times I feel like a refreshing beer I have a 0.0% alcohol one and they are lovely, nothing like the old rubbish you used to find, and lots of variety, 0.0% wine too.
What I guess I’m trying to say is I was lucky, very lucky, but you make some of that luck yourself. There is a light and life at the end of the tunnel, you just have to work hard to get there...BUT YOU CAN.
Transplant surgery was mentioned and I expected to be on the list at 6 months but I no longer need to go there. If it turns out you do, look at it as a second chance and embrace the opportunity.
I know it all seems quite daunting but I am living proof there is life after self inflicted near death!
If you ever need to talk or have any questions or just need someone to listen please message me. I can give you my phone number if you’d rather but not on here, I do want to help but I can’t help everyone, maybe I can help just one...
Wow, that is amazing! Fantastic results! May I ask what triggered the hospital admission in the first place?
I haven't been admitted so far 🤞I got a phone call after abnormal bloods and a same day appointment at the hepatology unit. It's been all systems go since then!
Thank you so much, you've definitely made me feel more optimistic! And thank you for the offer of a chat, I might take you up on it! I'm also a pretty good listener!
Your story sounds exactly like mine. I was diagnosed 14 weeks ago after drinking myself close to death. From that moment of the 3 months you have to live part I stopped drinking, gym 4-5 times a week and feel great. Thankfully alt levels are back to normal and transplant is no longer needed. Well done you have done amazingly well.
Hi Ali
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