Does anyone else find this happening? - British Liver Trust

British Liver Trust

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Does anyone else find this happening?

Bs1524 profile image
Bs1524

Hi, my husband was diagnosed with chronic liver disease due to alcohol abuse in May. He made some improvement then seemed to plateau and now seems to be declining then yesterday while still far from well seemed to pick up. Does anyone else find this happening. My husband says he feels everything seems to go in a cycle? I thought he would male gradual improvement and that it would take some time.

What has been your experience please I know everyone is different but would appreciate your insight.

Thanks

Pam x

16 Replies

I was hospitalized and diagnosed back in Dec 2017, I can honestly say I didn’t feel any great improvement until around May 2018, so a good 6 months later. My recovery seems to be as your husbands describes, in cycles:

1.Felt awful and have no energy or will to do anything at all (Dec 2017 to May 2018)

2.Felt great and like I can take on anything (may 2018 to jan 2019)

3.Back to feeling awful again (Feb 2019 to May 2019)

4.Feel great again (June 2019 to date)

My bloods are gradually improving (bilirubin was 400+ now it’s around 40)

It seems to take a lot longer to recover / get some kind of normality than I’d originally hoped for but its heading in right direction so that’s good.

Things I have found help although I am good at giving advice and not following it myself.

1.Exercise as much as your body allows, even to the point of doing a task in one rather than splitting it down, I recently went on holiday and even split down getting out of the pool (pull up and sit on edge, turn round to knees, stand up) Doing this all in one i.e get out of pool and stand seems like nothing but did improve my strength, what started out as a number of moans and groans soon got easy 

2.Take lots of walks, even if for just 10 mins or so.

3.Eat often, I find I can gorge myself and put little weight on, the poorly liver need a bit more nourishment than a healthy one, I do try to stick to a balance diet but could do with some improvement on that front

4.Don’t give up .. May was only 3-4 months away so don’t expect all to be great this early, I was told by my consultant that it’s a marathon not a race and it can take a couple of years for everything to settle back in place.

Good luck

Chris

oh forgot, one more thing, don't drink ;)

Bs1524 profile image
Bs1524 in reply to Chris-harris

Now that is the one thing I don’t have to worry about from the 13th May when he went into hospital he has not had a drink doesn’t even think of having one. Turns out he isn’t dependent on alcohol.

Chris-harris profile image
Chris-harris in reply to Bs1524

similar to me, its the one thing I have not been concerned with, don't ever want one again, the thought makes me feel sick. Just wish I had stopped before this illness came along!

Bs1524 profile image
Bs1524 in reply to Chris-harris

Yes my husband said rather welcome wistfully that his liver is getting it’s own back now.

Hidden profile image
Hidden

Bs1524 - yes, my autoimmune condition definitely goes in cycles with regard to symptoms. Some people refer to flares. I'm not sure if what I experience is what others call flares but they could be the same thing. Mine can be a few days good, a few days bad and sometimes the bad goes on for weeks. On the legthy attacks it's like every system in my body, one after the other takes a beating. Then it gets ok again. It may be that I'm fighting infection at these times. I don't know. But no one else would notice much different about me except I say "no" when invited to some event. And if I try to do stuff when I really know not to, it prolongs and increases the "attack". It's become the norm for me, and is easier now to stay calm about it and know that when it's bad, it will get better. It must be worse for someone watching over someone else going through it. I am sorry that you are going through this.

ThreeSmiles profile image
ThreeSmiles in reply to Hidden

I agree with you Phyllis......I always thought how much worse it was for my wife when I kept having ups and downs and ins and outs of Hospital. I mean, I know how I felt at any one time (excluding during HE episodes when of course I knew nothing!) but she is on the outside looking in on me and doesn’t know how bad I felt or otherwise. Strangely, maybe, I was glad I was the patient and not the carer tbh.

Miles

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Hidden in reply to ThreeSmiles

I"d rather be neither, but I agree with you, if I had to choose! :-)

Bs1524 profile image
Bs1524 in reply to ThreeSmiles

I feel helpless really I suggest contacting the doctor but he won’t so apart from finding interesting meals with no salt and organising his meds there is not much else I can do. I work full time so he is on his own a lot and that worries me too.

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Hidden in reply to Bs1524

Pam, It sounds like you are doing all that is possible.

If we believe that we ought to be able to make someone better, or different, or even safe, then we are setting ourselves up to feel helpless and to fail because it is out of our reach to do these things.

Even if you sacrificed your health, home, and future in the attempt to make someone else be different, it can't work.

Concentrate on doing what you can do, and be at the very least as thoughtful about your own needs as you are about your husband's.

I'm sure he doesn't want you to be ill and worried over him either because it likely adds to his discomfort. You can be sure that you'll have understanding and support from people here.

Phyllis Stein

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Hidden in reply to ThreeSmiles

Not strange, but maybe you were just glad to be you, and if you'd been called on to be caring for your wife, you'd have done it and equally be glad to be you. (I never want to be anyone else but me no matter how deep in the mire I get!)

I admire couples who can go through this though. It can't be easy for either.

Yes, my illness seems cyclical. I can feel really well, but a blood test, or BP reading tells a different story. I think as long as your husband sees GP/Consultant regularly, they can manage his meds and help with lifestyle.

I wish you and your hubby all good wishes. 🤗

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Hidden in reply to mattymoo33

Do you have a diagnosed autoimmune condition mattymoo?

mattymoo33 profile image
mattymoo33 in reply to Hidden

No hon, why? 🤗

Hidden profile image
Hidden in reply to mattymoo33

What you said above, "seems cyclical", "feel well....blood test tells different story" sounds very familiar to how I and many feel with autoimmune conditions. I have PBC, Sjogren's and another i forget the name of!! I was never an habitual heavy drinker, so I don't know if feeling ok when you're not can be part habitual drinking. But I did, at times, drink way more than recommended guidelines, and I was always certain at these times that I did not feel fine after and a blood test would have agreed with the feeling. I just wondered if AI conditions had been tested and ruled out.

To me it feels like I am singing a song "My life is like a game of Snakes and Ladders", I go up, I come down...

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