Confused

[Gizmo326]

Hi,everyone,

Saw my consultant last week and I asked him how I was doing,he said I was doing very well

Re garding my health I asked him about my liver and he said its doing ok,I have ascetics,odema, and of course itching all due to cirrhosis.(Decompensated liver)

I am very confused because my husband asked about going on the transplant list and he said I don't need to as I am doing ok, i asked about pain relief and was given the ok to take

co-codemol ,my husband asked about my ascetics and the itching and was told they would both improve given time. He prescribed Destolit tablets for my itching which I took for 5 days the itching got worse and has not settled since when I read the leaflet it states not to take if you have liver problems ! Uh, so now I don't know what to believe will my condition improve or am I stuck with these ailments forever?

[Bolly]

Hi Gizmo

My guess is, given a choice, I would rather try to live with my existing liver, even if its poorly, rather than have a transplant. It's a major op needed a long assessment process beforehand, needing you to be within a certain mileage of a transplant hospital all the time once you are on the list, and needing a cocktail of immunosuppressant drugs after the transplant. It gives you an extended life, but not a 'normal' life span necessarily (depending on how old you are now, lol!). I knew one lady who managed 17 years on her new liver, but I think that might be the exception. That's not to say I wouldn't agree to a transplant if I went into liver failure, but it sounds like your consultant thinks you can remain relatively stable with the liver you have as long as you are well monitored to pick up any life threatening side effects if they occur.

Not every one with decompensated cirrhosis goes immediately onto the transplant list, but some might end up there.

Are you stuck with decompensated cirrhosis? From what I've been told, the liver doesn't recover fully from compensated cirrhosis (which I have) so its doubtful it recovers from decompensated. But you can stabilise things by giving it lots of TLC, close monitoring, good diet, etc etc.

Your liver is having to deal with not only the decompensated state, but also the meds you are given to control the side effects of the decompensation. Pretty much all drugs go through the liver, so yes your Destolit will have a warning about the liver, even paracetamol has that, and probably co-codamol too. If in doubt about a medication, have a chat with your pharmacist, their training gives them the edge over a GP when it comes to medications and their side-effects.

[Gizmo326]

Hi Bolly,thnxs for your reply just hope the future improves, at the moment not much to look forward to, constant itching stomach pains just hope I can lead a relatively normal life in time, my consultant just keeps saying "it's early days yet" don't have to see him for 2 months now

When I saw him last week no blood tests taken he i did not need any, oh well keep my chin up thnxs again for your reply. Best wishes

[Bigplanet67]

gizmo

Similar here, I too have Dedompsated ALD, Dr and Consltant says we are in the maintenance and monitoring stages of the liver disease apart from the other conditions I have. Itching, stomach pain, lethargy etc etc. well if my liver is in the maintenance stage I am in the frustration stage. Sounds like you are too, 4 months and still seem to be going round in circles, sadly I still have too many blood tests. What meds are you on and have they reduced them yet.

In support Andy

[Gizmo326]

Hi, Bigplanet, at the moment the only tabs I'm on are Propanolol, and co-trimoxazole,

as far as I know the Propanolol are beta blockers and the co-trimoxazole are an anti biotic which have been prescribed until Feb 2014 that's all I take,feel very frustrated at the moment

am in a much better place than I was initially but just want to get back to some kind of normality. Best wishes Chris

[Bigplanet67]

Hi Chris.

Yes on Proponolol as well, along with Spiro, Vit B, Thiamin and Omozapole, Lactulose. Sounds like you did have Ascities and now does not need duirectics anymore, then reduce me from 300mg of Spiro and 80 of Fluromide.

I too get frustrated as I have vented on here too. Perhaps I/we are expecting too much and a miracle, or maybe just to be told what next or to expect. If it was not for my partner and was alone thou this I think I firstly would be worse and more depressed.

but, to be positive, you are better than you were and so am I. As for normality, I am trying my best but difficult had to give up work and just want my body to feel less painful.

Keep strong and hope things get better or at least clearer in direction.

Andy

[Bolly]

Hi Chris & Andy both.

Re the rollercoaster of feelings, I would guess you are both still in shock to a certain extent. You've both only relatively recently had scary times in hospital and what could seem like a fairly bleak prognosis of decompensated cirrhosis. My feeling is its understandable to be depressed about the future, and to wish that someone could wave a magic wand and rewind life back to before it got rather unpleasant.

Sorry, I don't have a Fairy Godmother wand to hand, so I guess we have to make the best of what we have. I had a bit of a jolt 2 years ago, when after 30+ years of knowing I had viral hepatitis but not being on any treatment and not thinking about it, I hit the brick wall of HCC liver cancer. Could I have prevented my liver getting that bad? Maybe yes, maybe no, but the fact is that what is done is done and regretting my bad choices in the past (in my case not insisting on monitoring or treatment earlier) won't heal my liver.

Your livers put up with a lot of years of a lot of alcohol, and no amount of popping pills or medical intervention is going to correct that damage in a few weeks or months.

It doesn't work for everyone, but I find no longer 'planning' things months or years ahead is how I get by. After an initial panic (will I survive the surgery, quick write up a funeral plan), will I see my son through university, will I reach the 5 year remission target, I gave up thinking longterm and now live day to day. I wake up each morning and think how lucky I am to have one more day, and then make the most of that day.

Family and friends wont necessarily understand how you feel, though they may sympathise and support - so as Andy says, come on here and vent and moan as much as you feel the need.

[Bigplanet67]

Sorry Bolly for slow reply, ths week was dads funeral.

Thanks for your sense and review point which I agree too, I too try and live day by day, but also trying to look forward a bit and get things straight in my head.

Bolly thanks for your continued input.