Hi all
I have stage 4 PBC -cirhossis and lately bren feeling really rough on some morning...sick, headache and like I have flu coming on, and then another morning I feel almost OK...should I eat something before sleeping in case it is the liver playing up from lack of food..trouble is if I do eat, then I find it hard to sleep! Not sure of it is food that makes me feel bad and maybe I should cut down on something. Any ideas appreciated. Thx
Hi bobbycat, Im at stage 4 as well, with cirrhosis & small varicies. Along with a list of other issues🤔. For me, my mornings are when I have the most energy. I try to keep my sodium level under 2000mg daily. This was asked of me by my university heptologist. Plus keeping the intake of sugar, red & processed meat at a minimum. I eat a ton of fresh fruit & veggies from my garden & try to stay a bit active. I have a 8 yr old daughter whose diagnosed with ADHD so I pretty much have to stay active haha. She gives me No choice at times. She's my blessing from God as my birthday girl who's 19 today is as well. Im sry you're feeling under the weather in the morning, I hope this helps.
Feel better soon❣️
Shannon
Thanks Sharon...I have varices too and had a bleed, landed in hospital for 6 days....hopefully the bandings have eradicated them all for now ..had three lots! I start to feel better by about mid morning...less weak and sort of flu like and then I carry on all day then carry on doing things actively only to peek at 5ish. Food wise I find it hard as I am gluten free and limiting of dairy and lowering salt....but I do eat OK except for sweet things! Thats my downfall..I lost a stone but it is nearly back after two years....I was already on the thin side so glad its on. There are so many odd things go on with stage 4..think I have IBS too now and they have found H pylori too...where I git that I din't know but have a feeling it will be heavy antibiotics ..😥
You must be busy with a family to take care of....but all worth it.
All the best
Yes, family keeps me going. Gives me something to wake up to. I also had three bleeds a year ago last May. Had three banding & also was hospitalized for over a week. That's how I found out I was at stage 4😞. Had 2 pint blood transfusion, plus they found a ulcer. I also suffer from hypothyroidism, ulcerative colitis (UC), & my neurologist is saying I have fibromyalgia. Yes, strange things crawl out of the woodwork at stage 4 that's for sure. But, we do have life to live & we should live it as comfortably as we can. Some days it seems next to impossible. Keeping you & all of us in my prayers, always!!!
Hi..we are similar as I have fibro too and maybe an ulcer due to the H Pylori..seeing consultant next week after being cancelled three times ..but I am lucky as live in the U.K. with the NHS...For the time being anyway depending on Brexit!
I am a lot older than you at 67 And was initially diagnosed with PBC when I was 43 so a long time til it became cirrhosis. But as people say this stage is much harder to deal with.
Anyway it's 11pm here so I will try and sleep..not always possible ....all the best
Forgot to ask do you take beta blockers to control hopefully the varises? I take one a day.
No, no beta blockers because my blood pressure is normally low. But, I do take Lasix to keep the pressure of the liver so the hypertension isn't so bad. This stage is difficult. My fiance tries to understand but has a difficult time sometimes also. He can't understand how one person's activity can become so different within two years. It's almost like I was feeling just fine one day, playing with the kids in the yard & being active to not doing so much ever. It's difficult too accept mostly
Yes I understand...nno one really understands except those who have it..another bad morning and night..this is new to me feeling so strange..almost like eating a mountain of chocolate ...never really drank but when I did also felt like this...maybe it will pass....keep in touch and others too who are on stage 4 / cirrhosis ..we are all a bit in limbo .
Hi bobbycat
I feel the same maybe 5 out 7 days. I describe it as like having a hangover without the alcohol. Not sure if eating late in the nite is helping cause I do that most nites. My husband keeps on at me to do a diary but just not got the energy for it. I also am at stage 4
Isn't it strange?? I've always compared it to a hangover without the drinking🙄. I gave up alcohol & I joke about still suffering from the hangover from my last night of whiskey. But it truly isn't a joke because I've always felt that more than not😞
Hi shulsey
I'm glad someone else can describe it as an Hanover because it definitely feels like that
Shulsey I forgot. What stage were you in at diagnosis. I remember that you lost yur medical insurance and had to go two years with no medication or something like that.
I'm concerned I'm going to lose my medical. My husband got fired from his job in may because his boss wanted him to do something illegal regarding taxes. Every year his boss fired cpa's or attorneys for not doing illegal tax stuff.
I'm supposed to be stage 1 and I feel like crap 💩 some mornings where other mornings I feel fine. I wish you well I really do. But it's obvious we are all screwed in the end
Jenny, I was at stage 2 at diagnosis. I forget, are you in the states or the UK? If I were you, I'd try to get a head start on some other form of insurance. Speak to your doctor's & explain your concerns. Im sure they would have some sort of information that could possibly be if help. Wishing you well❣️
I'm in Florida. No body cares in USA 🇺🇸 if we live or die here. I have an apt with my Dr at Mayo Clinic on the 26. I plan on telling him. We should be ok for a couple months. I told my husband to sue his ex boss. My husband is a tax Atty and his boss has been avoiding paying taxes. Oh well. it is what it is
He should turn him in. Im sry you feel that way about the States. I see things in a different light. I feel that my doctors & their staff care a great deal. But, it is unfortunate how everything boils down to politics & money, regardless how people feel & how the truth is. I pray that there's some sort of positivity that comes your way soon, you need it. ❤️
lol I feel that my doctors are the best too. The Mayo is amazing. But at the same time we didn't run out of money or insurance either. I have a terrible feeling that my enzymes will be very high my next visit. Believe me my husband will turn his boss in. Others may join in. It's a cruel world 🌎 at times.
Yes, true story about this big world we live in
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