Quick bio. Diagnosed advanced ALD last summer (severely decompensated with gross ascites and small varices) was very ill but not hospitalised. Had already stopped drinking as I knew that was the problem. Have been improving steadily over this time but fell off the wagon when my mother became very ill, then died last month, made worse by lockdown. Now on the wagon again and organised bloods this week to see what damage I had done.
Bloods are generally much better than I deserve, even bilirubin is OK but.... GGT is still horribly high. I am just wondering if I can ever get the GGT into good levels considering that the damage is already done? It was a horrific 876 (normal is under 36) It has had a constant downward trajectory since and is now 240
What is realistic for someone with ALD or what are other people's "normal" levels with ALD?
Thanks all, Wendy
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theoldboiler
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Hi Wendy 🙂. your story is so so very similar to mine ! Exactly to be infact only I lost my father to cancer , I’m so sorry to hear about your mum 😏.
I was decomposed ALD , ascites, had 3 drains . Jaundice etc .. 6 months left to live . GGT was 600 plus .
I fell off the wagon myself when dad passed away . It took me two years to come off the dreaded alcohol so well done you !!
I’m now 12 yrs with cirrhosis, good diet , no booze , good nutrition and regular check ups with Hepatology clinic , I do have issues regard to fatigue , insomnia , itching etc.. so yes you can get the read dog your GGT down in time . My GGT last November was 40 👍🏻.. stay safe and try to be strong in this difficult time
That is a brilliant help Millie, it is also nice to know that you have improved so much so I can do it too. Itching drives me barmy and the fatigue, I luckily don't have insomnia, I sleep for an Olympic Sport but it isn't very convenient being tired all the time. Thank you for replying and bless you, wishing your continued improvement. Wendy
It’s my pleasure . If I can be of any help or an example of what could be achieved . Obviously not all of us are in the same bracket so to speak . Aghhh ! The itching is driving me up the wall this week ! Lol ! I wished I could sleep like that 😂, but non of us have the exact same symptoms anyway but pretty similar .
You keep on doing what you are doing Wendy 😊! There is a better sun over the horizon
Sorry. Linda! not Millie. I am sure I am not supposed to but I find when the itching has gone beyond maddening that an antihistamine solves it pretty quickly. I try not to ever take any drug whatever so my liver has nothing else to deal with but sometime needs must
Hi Wendy ! Well my dr prescribed me Piriton and my liver consultant gave me some cream called Dermacool . The cream is ok short term for half hour 😕, but I’m afraid to take the antihistamines as I’m on pregabalin for my neuropathy
Hi Wendy, I was diagnosed with ALD last July lots of hospital stays since then but to cut a long story short I am now 5 weeks post transplant and can honestly say I feel a different person. There is still a journey ahead but you will definitely have a good chance of a longer healthy life after.
You need to do everything the Doctors tell you i.e stay off the alcohol otherwise they will not put you on the transplant waiting list. This sacrifice will be well worth it 👍
Thank you Kevin. I am going to do my damndest not to get to transplant stage but who knows what the future brings? I hope you continue well Kevin and your new liver gives you your new life. Wendy
Hi Wendy,
Welcome to our forum. Its fantastic to see the supportive replies you have received already.
You may find our publications useful to read on the website there is a link in our pinned posts.
We also have a nurse led helpline open Monday to Friday 10am to 3pm on 0800 652 7330
Thank you Trust1. I have done nothing but read since I was diagnosed so hope I am reasonably clued up. This forum and your Helpline are wonderful. Thank you all
Hiya honey. I was sorry to read that you'd lost your mum.
I have had similar symptoms and in November 2017 I was told I wouldn't see spring. I had a week in hospital having detox, blood transfusion and many other things. I have had ascites, bleeding varices, very frightening episodes of hepatic neuropathy etc. I am currently on the transplant list.
I just wanted to let you know that despite all that, I am as well as I can be, I exercise daily and eat (mostly🤭) well.
You can get better. It isn't easy, but nothing worthwhile is. You will look forward to a very bright future. Make your lovely mum proud.
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