Frightened

[readie56]

Hello,

I had a spleen removal operation in 2001 which led to pancreatitis and a PVT.

Spin on a few years and things have gone downhill frightening fast with a scarred liver, internal bleeding, ascites which a 10 day drain (usually about 6-7 litres), weakness,anemia ,( helped by 2 weekly iron infusions), tired all the time, poor sleep patterns (awake half the night and falling asleep in the afternoon), always feeling cold and the itching of dry skin drives me mad.

I'm on the liver transplant list at KCH now with a ukmel score if 59.

I weary of hospital time, endless consulting and internal examinations etc.

I don't suppose I'm alone in feeling like this.

Does anyone here have portal vein hyper tension and gone down the same path as me?

Thanks

John

[bluemoon2]

Can honestly say had all the above except spleen still intact,lost my belly button due to umbilical hernia, due to extended stomac ascities,its the tablets keeping me going,portal hypotension tabs,blood pressure tabs,tabs for varices,water tabs rifaxin for encelopathy strong course iron tabs at the min,anemic before that vtamin d was none existant,could go on,life with cirhosis is basically shite and you know the only people that really understand are people with the same problem and help each other the best we can,here is a be happy hug and try to keep on smiling great medicine.

[readie56 in reply to bluemoon2]

Hi blue moon, you are right. Its shite but we have to stay positive, which I am most of the time.

Its the only way.

[Hidden]

I had the same issue with the portal hyper tension which let in the end to transplant

I really understand the itching and the feeling rubbish.

All you can do is struggle on pray for the transplant as it gets better then

[readie56]

Hi David, I've pinned all my hopes on a transplant. The thought of actually getting better and staying well is .... Well, that's what we all hope for.

[Meteocal1]

Hi, I was having some serious portal hypertension, 5 bleeds in 8 months, each getting worse every time; I felt my body could not take another and one more bleed could be my last. However, I was evaluated and went through a tips proceedire as an emergency; now my spleen has gone almost back to normal, platelets doubled and feeling better in energy everyday.

[readie56 in reply to Meteocal1]

Hi Meteocal

That's a lot of bleeds.

I've been spared that with banding varices in my throat and stomach. My consultants dismissed a TIPS shunt as it wasn't surgically possible to fit. The portal vein thrombosis has caused a complicated network of veins.

The only solution is a full liver transplant. Unfortunately my blood group is present in only 1.5% of the population.

I'm really glad the shunt works for you. What's the risk of encephalopathy?

Take care

John

[Meteocal1]

We were advised of the risk for encephalopathy, but according to him, one month post surgery I am clear. Good luck to you

[readie56]

Excellent.

Best of luck for the future