Awake all night and exhausted all day

[SRE3]

anyone have any tips my husband has cirrhosis and HE and is now on insulin for diabetes. He has severe muscle wastage and is on fortisips which push the blood sugars high. He has arterial disease and neuropathy in his legs too. On top of all this he is finding it harder and harder to sleep at night and then fights to stay awake during the day in the hope it will make him sleep at night which it doesn’t! It just makes him moe anxious! Any one have an ideas? Exercise is difficult due to the arterial disease and muscle wastage he uses a wheelchair on the rare occasion we go out as he is so exhausted

[Hidden]

Dear SRE3

I've just browsed your previous messages written a year ago , and to me it sounds like things have not been improving on your hubbies health front for sometime now. Unfortunately I'm not in a position to give any advice on his condition but I do know there are certain members on this forum who have suffered similar conditions and maybe in a position later to advise you or give you some comfort!

Please take care of yourself in the meantime and I'm sure one of my wonderful caring friends will be in touch soon!,

I'm here if you just need some comfort from a female friend!,

Love Shropshire Lass ❤

PS ! I'm presuming your already aware that you can also obtain further advice from the British Liver Trusts helpline! I hear they have a wonderful caring team of people! Why dont you give them a call! You'll find there number on the web page!

[Hidden]

Hi SRE3,

My husband has cirrhosis and his liver doctor said sleep issues come with liver disease along with muscle wastage. We've never gotten any good suggestions for how to manage to get the sleep in at night instead of off & on all day and some during the night.

Hopefully, you will get some good advice from someone else on here with more experience on all your husband's issues.

Best wishes to you both,

Mary

[ThreeSmiles]

Hi SRE

I was ditto to your husband unfortunately. It’s hard to give you a great deal of positive input. Sleeping in the day and not at night was so much the norm for me, as was the bed soaked in sweat at night - sorry TMI 😕.

I also have peripheral vascular disease and cerebral neuropathy and they, as far as I am aware, are there for life. HE and diabetes are to thank for those, from my limited understanding. Blooming HE - what a bummer that is...!!

On the positive front how is your husband’s situation re a possible Transplant? That would be interesting to know. If, obviously a big if, he has the possibility if a Transplant then that would certainly be good news. 👍, as that transforms the way you feel and are, for definite!

If no TP possible there are others on here in a very similar boat who seem still to maintain a happy disposition. 👍. One thing your husband must get sorted is stopping the HE. I hope he has all the correct medication (lactulose, Rifaximin and maybe self administering enemas?). That makes a huge improvement along with drinking 2,5 litres of water a day. Of course this is only my experience and your Consultant will have spelt out what has to be done, I hope!

Sorry my words don’t seem very positive do they but it is, unfortunately, a long and winding road ahead, but one which you hopefully will get to the end of in a positive way 🤞👍.

Good luck and any updates you can give would be good....

Miles

[davianne in reply to ThreeSmiles]

Great post Miles, very sympathetically put👍👍👍

[Hidden]

three smiles has put it all so well

All I can say I have been there as well and things got a little better before my transplant with changes in drugs

In the mean time I can only give my best wishes and pray for some improvement

David

[Maxey666]

Hi SRE3

I too was pretty much ditto to your husband.

The sleep deprivation is extremely hard to deal with especially when it goes on and on. I just went with it and dropped off at different times during the day.

Muscle wastage, continuous cramping and my fingers used to lock up causing pain. It's a pretty bloddy miserable existence when like this and you have my deepest sympathies.

I hope your husband is receiving the best care and appropriate medication for his condition and that he is able to get onto the transplant list. In the meantime keep strong and positive and go all out to potentially get him on the list.

I wish you all the best

Max

[davianne]

Hi, I am so sorry your poor Husband is suffering like this.

I am in a similar place to him with a few different symptoms, and my liver is, at the moment, compensated. Sleeping is a problem as well, but is helped by taking amitriptyline each evening before bed. It also helps with pain a bit as well.

As Miles says, HE is a real problem, and so he needs to take his medications for that, and it will help with his cognitive judgement of day and night.I do have a nap during the day due to constant tiredness, but that won't stop me sleeping at night unlike the constant capsule pain.

Sorry I can't be of more help,

David

[SRE3 in reply to davianne]

Thanks David he was on the amitriptyline but they have reduced this right down due to complications with his liver being decompensated.

[davianne in reply to SRE3]

Hi, I take 2x10mg and they work most of the time. I assume if he is decompensated, then he's on the TP list.

I take mine for pain relief, but I'm finding it almost impossible to get them to prescribe me dedicated painkillers that are liver friendly for my capsule pain.

I am told that I'm too old at 72 to be considered for a TP, so I have to be even more careful what I ingest.

David

[Hidden]

Hi SRE3,

I'm sorry to hear how difficult things continue to be for you and your husband.

I was wondering if, besides Fortisips, there is another nutritional, high protein, but lower sugar replacement meal available that might be better suited for your husband's diabetes condition that a dietician/nutritionist might recommend?

I've read that Glucerna might offer something?

My husband also has the muscle wastage caused by cirrhosis and drinks meal replacement type shakes, too, which are high in protein and calories (but he does not have insulin issues so the sugar content is not a problem for him).

Melatonin is something that I am going to learn more about for my partner regarding his sleep issues. I've read other posters' comments here about using it for their sleep deprivation.

Along with all, hoping that things will improve for your husband soon, SRE3.

[SRE3 in reply to Hidden]

Thanks we have been in contact with a diabetic dietician and I must say the diabetic nurses are amazing! The general agreement is that he needs the fortisips to give his body fuel and they just have to adjust the insulin to accommodate the fortisips it is a slow job as he was only put onto the insulin after I did quite a bit of shall we say nagging!!! The gp just kept telling me it was to be expected but our specialist liver nurse got me an appointment with the diabetic team who immediately put him on insulin his confusion and memory is much better now.

[Hidden in reply to SRE3]

It is wonderful to hear that the diabetic nurses have been so helpful! And, that the confusion and memory issues that your husband had been experiencing are improved! TG for the positives when they appear. May they continue! Warm Wishes.

[Hidden]

Hi,

We are sorry to read how unwell your husband is, it must be a really difficult time for you both.

If you do want to call our helpline we can have a chat. Have you also seen the physiotherapy team at the hospital via a referral fom the liver consultant? They may be able to assess appropriate gentle exercises for your husband?

Take care

Warm wishes

trust1

[Peeps7]

Hi SRE, my husband Peeps is end stage liver disease and was discharged from all medical care and into Palliative Care mid September with a prognosis of two months. Six years on from the original cirrhosis diagnosis, he sounds like a carbon copy of your husband, TP is not an option obviously. However he was discharged with Renapro protein powders, especially for liver patients - it was yet another battle to get an NHS prescription, as indeed were Rifaximin and Clexane injections. HE and the subsequent confusion, neuropathy and exhaustion sound all too familiar. How are you? Feel free to pm me if it helps, hugs Anne.

[SRE3 in reply to Peeps7]

Hi Anne thanks for your kind words .im doing ok just trying to be as positive as I can. When we have a good day we do our best to enjoy and when it’s a bad day I just reassure him that it is ok to sleep. We seem to be getting the prescriptions ok now although I am on the Xmas card list at the chemist I spend so much time there picking up prescriptions!!! The hardest part I find is I feel like I’ve lost my identity! I seem to have become carer although I still work full time as I work from home most days I feel invisible some days. But having been through palliative care with my mum I just give myself a shake and try to enjoy the good days! Hope you are doing ok and a big hug back to you

[Peeps7 in reply to SRE3]

I think it’s called existing rather than living, I certainly feel that my life has been on hold for the past four years and it is exhausting let alone depressing but like you I try and get Peeps out most days. Caring is a hardcore 24/7 occupation but I am trying to be proactive to maintain my sanity! Peeps also attends the Man Shed at our local Hospice two half days a week and he has a carer from Crossroads who recently started one afternoon a week. Have you explored locally? We live near Hampton Court, Surrey and I badgered both the GP and District Nurse all of whom have been helpful but areas make a difference. I managed to break my wrist a couple of months ago, something to do with this crazy existence, thereafter all meds have been delivered home. Have you asked or tried Pharmacy2u? The confusion is driving me nuts, I dropped my twin granddaughters off after a sleepover at the weekend and Peeps had locked me out of the house, gone back to bed with his headphones and eye mask on plus he’s deaf 🤣🤣 forty minutes later ...... hugs Anne x

[Hidden in reply to SRE3]

Becoming invisible!

Last night I was reading Tove Jansson's lovely story "The Invisible Child" and how she became visible again. If you can't find a Moomin family nearby who made the child visible again, have a go at joining the conversations on here.

It isn't necessary to post a question if you don't wish to - just join any thread anywhere you like. I am 100% sure you will be full of points to share that will help others who would be invisible to themselves without this site. And you will become visible in the best way possible. You don't have to leave the house or dress up or even dress at all if you don't want to. It's magic!

[ThreeSmiles in reply to Peeps7]

I know the thought is horrible but when Rifaximin and lactulose stopped working for me I was prescribed self administering enemas. Horrible but worked. Never had a single HE episode thereafter - after nearly 4 years of them.

Good luck Anne - and to Peeps.

Miles

[Peeps7 in reply to ThreeSmiles]

Hi Miles, Peeps was prescribed the mega enemas in hospital last September "Kleen" (they really are huge!) and we have a quantity at home, the District Nurse has to administer same. The enemas work well but have ceased to clear the bacteria, hence Peeps' confusion is on the increase sad to say.

[ThreeSmiles in reply to Peeps7]

Oh my - sorry to hear that Anne 🙁👎. I must have been lucky....