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[N300786]

Hey guys I've read alot of your posts I'm just wondering if anyone has more info then what I'm being told. I am 31 with cihrosis portal hypertension and ascites, last tap was Tuesday 7th time, 11.5 litres, how long do you think I have, destroys me how my loved ones see me like this docs speak jibberish don't know what to do

[AyrshireK]

Whilst your obviously quite poorly just now with what the doctors will probably describe as decompensated cirrhosis (your liver is severely struggling) it is possible to come back from where you are now. Do you know the cause of your liver ill health? Often if the causal factor is removed or treated the liver can return to a state where it would be considered compensated (coping). Is there any likeliehood of you being referred to a liver transplant unit for assessment. You are very young and it is possible to come back from this.

You need to ask about referral to transplant unit but it would depend on the cause of your condition whether this might be considered just now. ie. Those with alcohol related liver disease normally have to prove a period of sustained abstinence before they'd be considered for transplant.

If you want to read up a bit about cirrhosis and perhaps learn what some of that med-speak mumbo jumbo means have a look at the British Liver Trust page on cirrhosis plus other pages on their website which give pointers on how to look after your liver going forward, appropriate diets etc. etc. The cirrhosis page is at:- britishlivertrust.org.uk/li...

All the best to you, Katie

[Dldtx]

It does appear to always be worse and easy assumption of death first. Having this disease is constant battle of what is next and how to fix it or can / will it be fixed and how soon. There is hope if you are fully cooperating with the doctors an there advise which is hard, I know because it makes no sense. Your condition as poorly and painful as it is, maybe it’s not as bad as you think. The portal hypertension and ascites are expected and common for us, as you read others post you will learn that this maybe just be the beginning and not the end, there are plenty of people with ascites with high numbers and frequent visits, portal hypertension isn’t that big of problem , like shunting or cancer, kidney disease or spleen and lung problems or HE etc... I believe it is impossible to pick a time frame or length of life expectancy. In my case I wonder each night if I am going see the morning. So by doing the doctors math I should have past last year, but I guess it ain’t time yet and I am not even on a list. You have to follow the recommendations, diet is very important no alcohol or drugs,. Each day researchers and scientists are improving treatments and medications. So you got time but exactly how much would depend on your response to treatments including the drainage and medications. Basically if the Doctors can control your symptoms through medications and treatments your ok, it’s when they can’t you start worrying. Good luck & get up and get to living, keep try to educate yourself on your conditions by reading and reaching out and asking questions, lots of research to read.

DLD 🤠

[Hidden in reply to Dldtx]

DLD are you not eligible for a transplant?

[Dldtx in reply to Hidden]

We have talked about it constantly and have completed everything but the counseling part my Meld scores qualify me but complications may disqualify me. Plus I just don’t see the need for a transplant at my age 58 I was told I would also require a heart transplant probably a kidney just to make 5-7yrs which I think is possible or close without it, and as a result of my recent cat scan of my lungs and heart. I don’t think I can so much anymore. I have Cirrhosis caused by Hepatitis C with my breathing problems I had my left lung partially collapse and along with Atrophic fatty changes of the pancreas. Scattered peripancreatic adenopathy both sides, numerous masses from small to large and growing. The right lung is compressed by my diaphragm because the liver is swollen can’t exhale properly . I have aggressively growing masses on the kidneys and spleen etc.. also. Along with heart problems and my favorite Hepatic encephalopathy etc...right now if I remember to take all my medications I am comfortable, still strong enough to ride my Harley about a hour or so once or twice a week, So my future is bright I am at peace an personally excited about moving on to our heavenly home with the Lord whenever, Just as I will be if the choice is made for me to be used experimentally be it new medication or new procedures whatever to help the ones coming behind me.As far as a transplant I don’t want to take the place of someone that is younger and could live longer I just couldn’t do that. Suddenly now I have doctors appointments all next week , I am sure that “we” my family and doctors will busy trying to figure all this out soon. I am retired have great insurance so as long as I follow the recommendations, eat right and rest I am good. Thanks for asking

🤠 DlD

[carllovatt]

i have found, when you see the doc, after they tell you what you have? tell them what they have said in your own words to make sure you understand what they have said, if you can have someone else with you, a second set of ears often helps

[LAJ123]

Hello,

I know things might look very bleak right now and its understandable that you feel pretty negative.

However, there are those here, myself included, who at some time felt that there was no way forward and your talk of not surviving is perhaps inevitable.

I was fortunate and never had to have a drain but there were other features of my illness that led some in my family and my partner to wonder if I was going to see my next birthday.

A friend was in hospital last Wednesday draining 8 litres and dreading the coming week because he would just fill up again and go back for the same procedure.

I went on to become fit enough to be assessed suitable for a transplant and receive a liver from a donor in March 2016.

My friend had a transplant two days ago, has left intensive care and is back on the ward making what seems to be an excellent recovery. ( I'm going to visit on Wednesday )

I don't know your circumstances, but I would like you to get some hope from our stories of where it seemed hopeless but had a good ending..

Take care,

Jim