Surreal

[4567tel]

My hepotologist who has been treating for liver cirossis for the last year has just told me there is nothing more they can do for my recent blood test has shown that liver is getting worse and unfortunately my rules me out of a transplant I am i surreal state wondering what is happening to

[MWCA]

I'm so sorry to hear about your news. Why have you been you cant have a transplant ? Werent you on a transplant list x

[4567tel in reply to MWCA]

I am too old

[DavyGravy]

Hi 4567tel

I am so sorry to hear that. Did you ask if there were any clinical trials in which you could participate?

There is research ongoing at present and if you got into a trial, it is possible you could see some improvement in liver function.

I wish I could be more helpful.

Dave

[4567tel in reply to DavyGravy]

Thanks Dave but I have had an awful year (COVID 2) so i have had weekend in hospital seen Professors in this disease so nów I so fed up with being pulled about injections blood test c/e scopes I really dont care no more just going to get affairs in order but thanks for your Conference Dave whats your Story tel

[DavyGravy in reply to 4567tel]

My story is not very interesting. As a foolish 15 / 16 year old I experimented with amphetamine by sharing needles and 50 years later I find I have Hep C. Hep C was unknown when I was young but now the NHS has a huge battle on its hands because the number of people walking around with a dormant virus waiting to destroy their livers must be frightening and the NHS are tasked with trying to find them.

I got very lucky as I'm at the fibrosis stage with low platelets and type 2 diabetes but I know very well that my problems could be a lot worse.

I worked as an NHS porter now as a town hall porter, just trying to stay as well as possible, trying to make the most of each day as it comes.

Dave

[AyrshireK]

When you say that blood tests have shown your liver is getting worse - have you got symptoms which also show this or is it just bloods?

As Richard said in his reply on your other thread if the cause of liver disease is removed then the liver will do all it can to try and repair things and even though bloods may show a deteorioration at the current time it is still possible to keep things ticking along and Doctors should still be able to help with any symptoms present even if they can't obviously do anything for the cirrhosis itself.

People can live long lives even with a cirrhosis diagnosis though and symptoms/side effects of having cirrhosis can be monitored and treated. However, if you are in a state of advanced, decompensated symptoms with all that that brings then obviously it's a horrific situation to know not a lot can be done.

I know the BLT has a page all about living with cirrhosis and also one on planning for the future in the event of end stage liver disease and it covers the supports that may be available etc.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

I do wish you all the best and hope you can make the most of remaining time and 'live' your best life to the max.

Katie

[pushthrough]

I am very sorry to hear this. I hope your liver gets another spark and starts functioning like a well oiled machine again! Sending you love from the USA my liver friend!

[4567tel in reply to pushthrough]

Thanks for your message but now I am beyond caring its been the worst year of my life .If it ważny for my partner being Herę well I dont know what I would do. At the moment I am just trying to get my Head around what the doctors have told me. I am really glad thought that I found this site its good to share my thought and feeling with others in the same situation regards Terry

[4567tel in reply to 4567tel]

Hi folks fellow heros well had a busy day yesterday startem to gett my affairs in order back pain and bile last night did not get much śleep hey ho way to go . Noce yellow this morning and bloody Cold how is everyone regards Terry

[Onesmallstep1969]

I don't know whether I am more angry than sympathetic right now. I just do not like to have anyone told there is nothing that can be done. The bottom line is never really up to any of us. None of us knows when our time will be finished on this Earth, so how can a doctor know that? You didn't give as much detail as perhaps we need to start to share valuable insights but I can ask, firstly, whether your recent blood tests are showing ongoing inflammation? Your ALT, AST, bilirubin, ALP and the rest? As for damage, I would ask how your liver's function is being measured (platelets, albumin levels, non-clotting factors, immunoglobulins IgG etc? These will give you a direction to approach.

But, no matter what, coffee will help. Coffee helps all forms of liver disease, studies have found, no matter what the stage of the disease. If you can tolerate coffee, drink 3 cups a day. This should be filtered (American-style) rather than espresso. Let us know whether you have ascites, are bleeding, etc.

If you can tolerate eating solid foods, eat some green vegetables. Boil them to make them a bit easier on the digestion. Add some colorful vegetables (carrots, boiled to make them soft or just buy puree).

If you can't tolerate the chewed food, put the vegetables in a blender and make a smoothie. Do this at the start of your day instead of orange juice or some other drink.

For more solid food, eat salmon. Add a bit of brown rice, some well-steamed broccoli, cooked until soft.

If you can, walk a bit, slowly. Exercise helps all stages of liver disease, even those on transplant lists, scientists have discovered. Easy does it but do it.

Stay as positive as you can. my fellow good journeyman on this road, this long road. You've only hit some rocks, but you haven't been stopped. You may surprise yourself.

[4567tel in reply to Onesmallstep1969]

Thanks for your email yes it does seem strange but I completely in the dark as to what all technological terms are and I have absolute faith in my medical team . Solid food is getting harder to get and my bowel functions are really bad standing and eve now walking a tiny distance just leaves exhausted now I have had loads of tests and bloods done seen specialists at kings so it’s just as they told me a matter of time now could be 6 months or 9 months. I’m now waiting for the palliative care people to come so things are being dealt with well thanks for your message it’s good to know and hear from others who are in the boat. Hope things are stable for you regards Terry

[Onesmallstep1969 in reply to 4567tel]

Good morning, Terry. The coffee is your best friend. It helps your liver generally. It helps to move the bowels too. Moving the bowels will lower the levels of ammonia in your blood, so you'll feel your head getting a bit clearer. One step at a time. One step at a time.

[Suduko in reply to 4567tel]

Hi Terry I am 76 I was diagnosed with end stage 4 liver cirrhosis in July 2021 I had my life saved 3 times I was in hospital 3 months. I am going into my 9th month since first going into hospital my liver is no longer decompensated as it is working and compensating now it just goes to show that things can turn around. I wish the best for you x

[4567tel]

Hi one step had a busy day today getting things sorted out feeling knackered now I will try your coffee theory although it raises my blood pressure