Fatigue

[acjb007]

Even though my liver tests are positive and improving the past couple of weeks I've been falling asleep in the afternoon without warning. This morning I woke at 7am but then fell back to sleep and didn't get up until 6pm. Is this my cirrhosis or medication? I'm on the same medication and can't understand why it seems to be getting worse. I also haven't eaten since last night but I'm not at all hungry.

[judyt]

Sounds like clinical depression could be happening. Being diagnosed with such a disorder as those we have can be a nasty shock and then on top of that you have to cope with the mental stress and the effects of the meds. Don't be surprised if your doc thinks you need a bit of special help, counselling often helps. you have to be allowed to grieve over the way of life that you have lost and to make a start on accepting what life will be in the future. Here in NZ we say Kia Kaha!! Be Strong you will get through.

[dckimberly in reply to judyt]

I think getting depressed with a serious illness is quite normal..but loss of appetite and falling asleep all the time are actual well known and documented symptoms of cirrhosis. Not to argue..but I would not assume this is clinical depression first, unless she is experiencing other factors.

This sounds like cirrhosis doing what is does.

[cazer in reply to dckimberly]

Whats the lastest with your liver kimberley?will you have to go through it again?...hope yoir okay as can be?best wishes cazer.x

[dckimberly in reply to cazer]

yeah. So the new liver is going to fail mechanically, they are saying. They are giving a ball park of two years or less. In the meantime I've decided to try the tipps shunt which has a 50 50 chance of working and stopping the ascites, which will be good for my quality of life. Right now I'm just miserable in this heat and the fluid build up. My kidneys are also not fairing to well..The creatin bobs up, way up and down, to about 150 or so. but they think that has to do with my liver pressure. They say the Tipps Shunt will NOT fix the underlying problem, but will hopefully make me more comfortable. Then it will be the same protocol for the second tx, if I choose to get one. I have to be healthy enough ,etc.

so, we will see! I have another drain tomorrow and then I have the tipps put in on Aug. 25th.

Thanks for asking sweets.

Hope your doing ok?

XXX

kimberly

[Hidden in reply to dckimberly]

goodluck Kimberly

[dckimberly in reply to Hidden]

Thanks so much! To you also! I hope your feeling well so far this summer? Or,lol, well enough? And welcome to the forum!

Cheering you on!

xxx

[cazer in reply to dckimberly]

You poor love you must be gutted after all youve been through.i cant believe youve had such bad luck.presumably if uts messing up yoire kidneys they will put you forward for anothrr tx?i can see that maybe you cant face the thought of it all again.

Im off to qe again in august the blood tests are gradually getting worse.last visit in may consult said prob be listed sometime this year just nit quite yet.

We have just had an amazing hol which we nearly did go on as the insurance was horrendous!!! But we ended up with 2policies.but i am very grateful for being able to go....the consult pulled lots if faces as it was a cruise from england as no flying due to varices etc.

He still wasnthappy but didnt say no so we went.i just think if yoir nos up then thats it so no point in worrying.we took a wheelchair for getting off the boat.thats prob what you need but its easier said than done.much love to you.xxx

[cazer in reply to dckimberly]

How did drain go?

Can you walk much or are yoi too tired and poorly to get out?

Youve been so positive...there no is justice.i feel mega cross on your behalf...are they giving you a timecscale?for 2nd tx? Love cazer.x

[dckimberly in reply to cazer]

Hi sweets & thanks for your concern.nyup, 22 lbs lighter, or 10 liters. Lol.

A bit crampy, but that's normal as the organs find their way back to their regular places. They are saying this liver might last another two years. They are not sure, but they know it will fail. I hope I am healthy enough then. It's the same criteria. A second one, of course, is more dangerous, so good health matters!

I'll have another drain in 4 weeks, the day before my Tipps proceedure. I'm not holding my breath on that, but we will see. My drain specialists said that out of the last five of her patients that got the Tipps, all were failures. Beyond that, her experience is 50/50 that it works. She said sometimes the need for drains can be reduced, like every 8 weeks instead of every four.etc.

I trust her. She actually does more drains than anyone else in the country,na bout 15 per week, and there is another nurse that works with her doing drains full time also. My specialist is a Sister, and this is what she does.

We're at Addenbrookes, which is the teaching hospital for Cambridge University. She trains doctors, nurses etc. when I tell her about folks on here needing drains and being unable to get them, I tell her I think she should travel around the country training people. I've allowed her to train several doctors, consultants even, and students on me, while she is draining me. I say all this because she really is the best, and I trust her completely. She has taken care of me now for two years and I get her advice on everything.

I hope my proceedure works, and if only so I get drained less, for quality of life.

Sorry to go on and on, lol but I do think folks out there thinking of getting one of these..you should know the facts and the percentages. Addenbrookes treats soooo many liver patients and transplants. I'm so lucky to be there. The liver is thei main organ, as far as transplant goes. And Papworth will be there in 2018. All the staff is coming with them! So that's good!

Hope your doing well? Being good? Watching this heat? Lol

Hugs you,

xxxxx

Kimberly

[cazer in reply to dckimberly]

Wow!!thats one way to go on a diet..like giving birth baby etc twice over...it must be so heavy and uncomfortable!!!!

You must feel like you are just marking time.

Im having more liver pain struggling more with falling asleep and nausea but okay on the scale of things..no ascites at present but do wonder if its starting...know sounds silly but when ive been lying down then.sit up theres a lot of gurgling and drain noises but may just be bowels.back to qe in aug ...consult yjinks i might be listed this year.blood test are not right but not terrible but urine bright yellow and bowels same direction ...he seemed to take more notice of this than other stuff.

Sorry being a bit basic!! The other thing im finding is i feel cross..silly stuff really seems to annoy me ive read that can happen?have you had that? Cazer.

[acjb007 in reply to judyt]

I do suffer with depression but take a high dose of prozac. Maybe it was just a bad day. I did feel depressed that day.

[cazer in reply to acjb007]

Ive been told to eat little and often as well...if i dont the nausea kicks in and i feel even worse.forget 3meals a day....more like 6/7smaller ones.

The other thing i have trouble with is keeping warm...not so bad at the moment but i get cold really easily and then cant get warm again.its again because the liver is struggling to do its work.cazer

[cazer in reply to judyt]

I was told that nausea and sleepiness are all part of cirrhosis by the consultant.i could sleep fir hours in the morning/afternoon...the only thing that stops me is noise outside as im i a light sleeper .i dont think anyone can assume depression..i agree with kimberley.

Our livers are our batteries so if they are not working properly then things dont work right.cazer

[dckimberly]

you sound just like me right now!

Loss of appetite and continual fatigue are regular symptoms of liver disease. (cirrhosis)

It's interesting, but I found out last year that the liver is responsible for taking the food and storing energy for when we need it. Then it releases the energy. As the liver gets worse, this process slows down. Good blood tests don't necc. change that. They did not for me, anyway.

Falling asleep at any given time of day or night is also normal.

Lately Im falling to the left , hitting my computer desk which wraps around. lol.

My docs and nutritionist have recommended trying to eat small amounts every 3 hours or so..maybe a yogurt, or some fruit, and def. some regular food type meals.

I'm also on these Ensure yogurt drinks. The other kinds taste yuck to me..but the Strawberry flavored ensure help a lot. They are high in calories, not too much to consume and have all your needed nutrients.

Hope this info helps!

Cheering you on!

xxx

p.s. but it can also be medication or a combination of both..you did not mention what that was?

[judyt]

Interesting!! haven't been told about those symptoms before something to look out for.

[dckimberly in reply to judyt]

Nods, yeah, you will find that many of us have the sleeping thing, and yes, some people do get their days and nights mixed up. I myself have never had HE. I think that is not as wide spread as the tiredness.

That and lack of physical energy. That gets worse over time also, or can.

My doctors say if I can walk a little bit every day then that is a good thing. I did that until I could not do it anymore, before my transplant.

And you may need a med change? I guess if your liver is getting worse, it could effect how your medication is working?

Cheering you on!

xxx

[LAJ123]

Falling asleep regularly during the day and overwhelming tiredness comes with liver failure. Do you have difficulty in sleeping at night ? Ever found yourself a bit vague and getting words mixed up ? If thats the case you should report it to your GP or liver consultant. Its not the the place on here to diagnose but we can advise.

[acjb007 in reply to LAJ123]

I have no problem in sleeping at night. In fact after all day in bed I managed to still sleep through the night. I guess I just have to accept this is how I will feel from now on.

[LAJ123]

reason I asked the questions was with regard to hepatic encephalopathy. worst case scenario of course - wouldn't want you too worry too much. However, information / knowledge is power. The more you now the better you can care for yourself. I know how horrible all of this is. I'm fortunate to have had the transplant and seem to be doing really well, but I care a lot about those who are doing their best to survive as best they can.

As I've said before, there are people here who collectively know a great deal and can give you lots of help and support.

Jim