Had a varice bleed in August ..I have PBC cirrohosis ...but am still worrying when I feel exhausted ...

[bobbycat]

Hi

Has anyone here had a bad bleed and then worries about having another when feeling exhausted? The bleed was a surprise as in,y diagnosed a month before. Sometimes I am not so tired but when I am...worry starts checking in. Also feel vunerable..I am 65 fenale and my partner who is German wants to go to Germany for a week..we have no family so I feel I will be left alone except for the dog and cant walk him as he is strong. . I sort of feel its a bit selfish of him but I realise I shouldnt feel that but....good times and bad....and all of that. Any advice welcome! Thx

[AyrshireK]

My husband had a single massive upper GI bleed in April 2012 (7 burst varices), he had follow up endoscopy checks a few weeks after the initial one and then every couple of months before a new consultant took an 'aggressive approach' to banding doing it about every 5 weeks until hubbies varices were eradicated. He was never placed on a beta blocker - doctor said it wasn't worth it after a bleed.

Few questions for you.

1) Since the bleed and treatment have you had further endscopies and banding?

2) Are you on a beta blocker to reduce portal hypertension and risk of further bleeds?

3) Exhaustion goes along with cirrhosis and auto-immune disorders so that in itself isn't unusual. When you say you fear another bleed I take it you are having regular blood tests to check your various levels (especially to check for anaemia which might indicate a bleed) also do you check your stool colour - we have some wonderful discussions in our house about stool colour. Pale and clay coloured indicating bile issues and black/tarry might indicate an ongoing bleed and immediate need for hospital attention.

Can't really offer much further advice than that - if you feel you are having a bleed or feel more exhausted than usual then blood tests would be a good place to start and of course any sign of a bleed get yourself to A&E.

All the best to you.

Katie

[bobbycat in reply to AyrshireK]

Thank you Katie. Yes I have had 3 endoscopies of around 3/4 bands put on at monthly intervals...stopped now perhaps to let scarring heal a bit but want to know if I still have a problem! As last endoscopy was two months ago and I has two bands, the other vaeices were almost gone apparently. Dont see my consultant til April ?.So will have another endoscopy probably and am on a beta blocker. I have had blood tests, there was a suggestion of possible anemia but gp said it was OK but platelets a bit low but also acceptable. I had a ultra sound the other week as my stomach swelled but luckily no water.

Luckily too stools are not black again! A bit pale sometimes but not too bad.

Your husband is still OK after all these years?

[jojokarak]

Hi bobbycat I too have had varices bleed, I wasn't as lucky as most people though and I ended up in a coma, but that is a very rare occurrence. They tried me on betablockers but because of my asthma I was finding it difficult to breathe, I had a number of banding procedures over the course of a year but I ended up having a stent fitted in my liver to slow the blood flow down. I understand your fear of it happening again and I lived in constant fear for a while but I just wasted that time, you have to remind yourself if it did happen again the hospitals and doctors know what they are doing, your consultant may have finished banding procedures as he may have completed them all as he wouldn't leave it so long to do.

[bobbycat]

Thank you.....you had it badly and I dread even nore a stent because of HE but if I remember right from posts I read you have had a transplant but have an infection now? Thats a real shame but at least you can relax knowing you have a new liver.....all the best.