Getting answers

[EllieBlue]

A few weeks ago I developed a bloated hard stomach. Cue a hospital trip and an Xray, CT, ultrasound and goodness knows how many blood tests later I have cirrhosis and anemia. I have an endoscopy and colonoscopy coming up. I don't drink and current thinking seems to be that it is related to an existing autoimmune condition.

I'm been told repeatedly its very serious but nobody will be more specific than that. I've done some reading online of reliable sources such as the Liver Trust website, NHS, peer reviewed academic papers etc. This suggests that average life expectancy without a transplant for decompensated is pretty short.

I did get a drain 10 days or so ago and it gave me some relief for a few days. I was hoping for another but am being told there is not enough fluid in any one place to safely do it again. I'm struggling with physical activities, even something as simple as washing up and putting away a few things takes its toll and I feel like I've got a lead weight strapped to me. Any tips for how to cope with the bloating (I wasn't skinny before!)?

I'm also caught between wanting to eat and feeling hungry but feeling too bloated to eat and that its such a lot of effort to make food.

I'm still trying to work, I have my own business though mostly work desk based at home, buts its an increasing challenge.

I'm on the emotional rollercoaster of different emotions which I'm sure is common but whats really frustrating me is my inability to make decisions because of the lack of information about my situation. If my life expectancy is short then I need to get on with closing down my business and trying to equip people who will need other support to cope without me. If a transplant may be an option then I need to at least look at these on temporary basis. Living in limbo is making things hard to manage.

I've not talked to friends and family at all as theres a lot going on at the moment that people are already dealing with. That aside, I'm also not comfortable with sharing a whole bunch of unknowns for them to worry about. Finally, I'm much better able to deal with difficult situations when I know where I stand and I think I need that in order to cope with the people around me dealing with their feelings about the situation.

I have pushed the hospital about my as yet unscheduled consultant's appointment and will follow up this week. If nothing looks like it is happening then I will see if I can get copies of the test results in which case I may go private at least to talk through with someone and if I can't get an answer then perhaps I can at least get to the bottom of when I might get one. I have talked to the Liver Trust helpline who were very helpful but of course can only give general information.

Any hints and tips for coping with all this would be appreciated from those of you who have been here. Plus I'm curious to know how long did it take before you had some clarity on your own situation and were able to make some plans?

[LilacPoppy]

I am in a similar position in that last October an ultrasound said I had fatty liver, enlarged liver, enlarged spleen and gallstones. Luckily my Dr wanted to do more tests but unfortunately we were evicted from our home and got a virus that lasted until April. When I finally got round to doing the bloods, my Fib4 score seems to suggest I am in extreme fibrosis or cirrhosis. I am going for a Fibroscan on Friday so will hopefully know more then.

I, too, am petrified that it's going to come back as decompensated cirrhosis and I am going to die.

So, I feel your frustration at a lack of clarity about your diagnosis and wanted to let you know you are not alone in this x

[EllieBlue in reply to LilacPoppy]

Thanks for replying, its good to know its not just me feeling like this. How awful to have waited for so long and with so much else going on. I hope you get some positive results on Friday.

I've been told already mine is decompensated unfortunately. I think I'm more worried about leaving things in a mess and people around me with more than necessary to sort out particularly as I those who depend on me for practical support. The risk of dying feels almost like the least of the issues but organising in a crisis is my coping mechanism...

[kensimmons in reply to EllieBlue]

People in your condition can sometimes get a liver transplant that saves their lives, so don't give up hope just yet. You will get a liver transplant sooner if you come with a donor of your own whose blood is a good match, usually that is a sibling or child. Good luck and don't give up hope. There are many stories of people being told they just have weeks to live who lived a long time after that.

[EllieBlue in reply to kensimmons]

Thanks, I didn't mean to sound like I've given up hope. I think I'm just one of those people who plans for the worst case in order to be prepared for as much as possible because that reduces my stress levels.

[kensimmons in reply to EllieBlue]

I completely understand. If it is from an autoimmune condition as you say, it might be more curable than you think. Just for the next week until your appointment to everything you have been told to do, make sure to limit salt, let's see where things stand next week, please take it easy, you might get some very bad news but there is every chance that you may, in turn, get news that is surprisingly positive. Good luck and give us an update next week!

[EllieBlue in reply to kensimmons]

Thank you

[pushthrough]

Hey Ellie, I found out I have compensated cirrhosis when I was 38 very likely from previous alcohol use.(over 2 years ago) I spent several months not knowing WTH was going on. It’s a terrible feeling for sure but try to remain positive. It sounds like you want to know life expectancy. I think most everyone on here will tell you no specialist can tell you that with much reliability. I have read many people on here recovering quite well after being in a decompensated state. The biggest thing would be to stop the progression by them figuring out what caused it in the first place. I look forward to hearing your story of bouncing back!

G.

[EllieBlue in reply to pushthrough]

Thank you