Dehydrated and tired all the time...

[Steve_c]

Hi

I've been living with cirrhosis for around two and half years now and at the moment seem stable, scoring 7 on child push so just inside criteria for transplant but no need just yet.

But I'm constantly feeling dehydrated and even after a good night's sleep (or so I think) I wake up feeling completely drained, more tired than I felt the night before and again very thirsty. It's a big effort to get up but I make sure I force myself to do it as I hate just lying in bed not achieving anything.

My consultant just reduces my spironolactone intake ( was on 100mg ) and blood sugar is ok.

I was wondering if this kind of feeling is common with liver disease and if anyone had the same issues?

Thanks

S

For info

I'm under 3 monthly surveillance with a consultant and currently take 100mg Thiamine, 20mg Omeprazole, 25mg Spironolactone. Also take Codeine for pain as I also suffer from Ankylosing Spondylitis but anti inflammatorys are now a very big No!

[AyrshireK]

Hi Steve, sounds like you are in a similar boat to my hubby. The chronic fatigue which is not only physical tiredness but also mental exhaustion - lack of drive, lack of interest in anything, difficulty with concentration, sleep issues. General feeling that life is being wasted as we wait for what is to come.

Hubby was diagnosed with cirrhosis due to Auto-Immune liver disease in April 2012, since then his blood results have always been borderline and he's never had ascites. He's had 42 varices banded and a procedure to embolise aneurysms in his splenic artery. He was assessed and listed for transplant in June/July 2014 but only just scored the necessary points and throughout his 10 month of being listed he was constantly told he didn't meet the criteria for listing because his blood results were always borderline - so the call was never going to come.

In May of 2015 he was delisted which caused us a bit of upset because we'd hoped transplant would give him his life back and now we are merely going through the motions of life - he can't work, struggles with sleep at night, we can't have any 'marital relations' and actually can't share a bed because of his restlessness, during the day he will be fatigued, like you he can get an occasional good nights sleep but feels worse the day after one of those nights than he does on a disturbed night. He has mild HE symptoms and struggles with basic instructions, short term memory and sometimes his speech is a bit muddled. He is also very slow in his actions ...... getting dressed etc. He can't concentrate or follow instructions and it's all down to this illness.

He previously worked full time as a welder, was a very driven person with some of his hobbies being almost to the point of obsessional - long distance walking, film making, photography, historical reenactment and reading. This illness literally turned his life upside down overnight and none of the above he can do anymore.

We don't know what the future holds, everyone keeps telling him he looks well, is doing well (weight gain/good blood numbers) yet he feels dreadful and feels like the life he hoped to live to the full is being wasted. He can't go the long distance walks he loves, he hasn't managed to travel to England to see his elderly dad in 4 years, he has no concentration or energy to take on a new hobby.

It is just rubbish - we do try to make the most of the good days but he just gets really low because there's no hope of getting much better without transplant (and even that isn't guaranteed) and in the meantime good years of his life are being wasted away - living this sort of existence but without the 'quality' he'd hoped for. We know there are others in a worse state than ourselves but it doesn't make it any easier when your life is being frittered away.

Hubbies motto has always been "Life is not a rehearsal !" - hence the reason we met and moved in together within two months but since this illness hit us hubby feels his life is just being wasted.

Hubby takes Omeprazole, Prednisolone (5mg), Lactulose, Rifaximin, Adcal D3 & Penicillin V daily.

At the moment we see local gastroenterologist every 6 months and liver doctor at transplant hospital (though not now in the transplant unit) every 6 months so we will see a consultant either locally or at Edinburgh at 3 monthly intervals. Next endoscopy at Edinburgh in July and 6 monthly ultrasound scans (April/October).

It might be that my hubby never gets any worse and somehow we have to adjust to this as being what our life is .................... it's a tough one when you want to do so much but you don't have the energy or drive to do so. It is a situation I find I have to help hubby with so often, trying to help him get his head around it but it is hard and I don't have the solution to it unfortunately.

I guess in short Steve to answer your queries yes the symptoms you describe are very common with cirrhosis and you are not alone. Hang on in there and live the best life you can.

Wishing you all the very best, Katie x

[Steve_c in reply to AyrshireK]

Thank you Katie.

I can understand how your husband feels and to some extent how you feel too.

My girlfriend and I are in a similar situation, although as she has other medical issues of her own I also have to be strong for her. In one way it helps me to look beyond how I'm feeling and give me that extra push, but I know that at some point in the future I just won't be strong enough.

At the moment I get through the day by doing as much a I can over a couple of hours knowing that I'll eventually have to stop and sleep for a while. Its works to a degree but it still means I wake up feeling the same as I do in the mornings.

I've suffered with Ankylosing Spondylitis since I was 12 ( now 42 ) and one of the symptoms of this when it's at it's worse is constant fatigue. That's one of the reasons I asked about this as Im never sure if it's the Liver disease or the AS that's causing the issue. Probably both.

I guess I'll just keep looking forward to the words "stable" and "keep an eye on you" ... Although I have to admit that some mornings I wake up hoping that something has changed and Im put on the list ... perhaps it's the feeling of moving forward as opposed to just coping every day.

Thanks again for taking the time to reply to my question .. Its helped a great deal, and I hope that your situation gets better in time.

Steve

[jojokarak]

Hi Steve, it is part of the liver disease to be knackered I am exactly the same after a good night sleep. Only thing I will advise you is not to do all you can within a few hours as eventually it will take it's toll, it will make you run down and weaken your immune system making you more susceptible to common illness which in turn could hospatilise you. Am sorry to say but you just have to learn to have a slower pace of life and eat well and regular fresh air x