What does the future hold?

Hi everyone,my name is Christine,

On the 29th December my husband noticed that I was very yellow and my abdomen was swollen,after calling NHS they told me to go to an out of hours clinic where I saw a Dr he immediatley rang our local hospital and sent me there.

I was terrified as was my husband,after an initial examination and tests it was obvious that my liver was not functioning, i was admitted and treatment started, I was very very poorly

After 4 days on a chest ward due to a lack of beds I was transferred to a gastro ward and the real treatment started, my husband was told by the consultant that if it was only the liver I had a 50/50 chance but i was also suffering from kidney failure as well and that my chances were 10%.....

I was treated as aggressively as possible and started to rally after four weeks in hospital I was deemed well enough to come home, I am seeing the consultant about every 4 weeks and have had my abdomen drained twice the first time whilst in hospital 8ltrs and the second time last week 6ltrs. I have decompensated liver disease, cirrosis due to alcohol and am worried about the future, I don't sleep we'll, I itch, i am sure you know the symptoms.

My consultant tells me clinically I am doing very well,l by the way I have not touched alcohol since nor do I feel the need so I guess in that respect I am fortunate.

Sorry for the long blog but need to share my story with you all.Just don't know what the future holds in Respect of my condition.

Thanks for reading.

9 Replies

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  • Christine

    firstly sorry to hear you news and well done stopping the alcohol. Your story is very similar to mine, I was diagnosed 2nd Jan with Decompenstated ALD, cirrhosis and other co-related symptoms and conditional, including itching, pins and needles Astrpohy and extreme dizziness. Sleep is a luxury, at least I know all night time TV.

    My story is on here in full as well.

    I too see my doctor and consultant every two weeks, and becoming a routine....bloods,results, what next please? Bloods seem to change and new issues found, seems a constraint changing target of actions. I am sure you will or have had similar.

    The question you pose is one I certainly have asked and I am sure all have asked or thought about it. To date I have not really had a answer 6mpnths if I continue to drink (stopped totally) to 4/5/6 years maybe longer. seems depends on progress of condition and the reaction to the drugs. Not an answer really but I guess they just don't know. As another member said they seem to want to settle the drug/conditions to be stable before taking the specifics.

    One day I feel fine next day rotten as hell. Friends sometimes see me as false with the condition as don't really look different apart from drinking coke. But they dont see or feel the symptoms below. planning is difficult but I have tried to keep to a normal routine as possible. Support - my partner keeps me in the real world and makes sure I do stuff and not use the not well excuse not to do things. But very supportive and understanding of the issues and conditions. I am sure you get the same from your husband. Partner gets a bit protective, had a cold last week for wrapped up in cotton wool. Which. Hate the fuss,

    Eating is important but to me I am not going to be anal about food too much as long as i am eating, I will tend to have anything I like, small and often is the general rule.salt- yes I need to cut down on this, not too sure how you are finding eating.

    It has changed my outlook on life and effects every thing. Booked holiday, holiday insurance nearly impossible to get, and don't even go there about life and sickness insurance.. pensioner guy came round to review my pensions, said you need to up contributions so you have a bigger pot in retirement. Ha you mean if I get there to have the pension. Done my Will and living Will to last week, seems drastic but time to sort out some house keeping.

    The original question was what does the future hold for you- I guess quoting a QI line "no one knows" but keep up you strength and enjoy now I am.

    Well getting ready for trip to doctors more bloods to be taken, results and then change in drugs? What drugs are you taking out of interest. Hope you found my blog of interest and not just my problems.

    Please keep on posting I have found some good advice on here and support in knowing your not the only one going through this. Keep strong...

    Andy

  • Hi Christine

    I'm sorry to hear about your condition, but most people seem to improve when they stop drinking and the comments are pretty positive on here...

    Are the pins / needles and Atrophy you mention part of the liver problem? Or are those symptoms general problems re alcohol use?

    I ask because I drink a bottle of wine a night and have pins an needles and pain in my arms and elbow's all the time, some days are worse than others. I have thought it maybe from alcohol that's why I am looking for info on here.

    Did you really not have any symptoms at all re the liver problem?

    I know I have to give up but think I am in denial........

    Tevion

  • Hi Christine

    Sorry to hear about your situation. I don't have much to offer other than to support you in not touching alcohol. If you find that you are in need of a transplant (as I did in 2010). the fact that you are dry may well be a deciding factor in whether you get on the transplant list - this apart from the obvious advantages of not drinking.

    Among the consequences of my not drinking (leading initially from a decision to have a dry January in 2010, was one of the best health related decisions I have made: I feel much better, am quite fit, have lost weight and maintained it consistently. That you are finding that bit easy is a big plus and will, I am sure, contribute towards a gradual improvement in your health.

    Other than that, I think you have to listen to the advice you are given by the specialists, take the medications etc, and enjoy life as much as symptoms allow you. I wish you well.

    Mike

  • Thanks for your comments good to know i'm not alone, the medication I take are:-

    Propranolol,co-trimoxazole,pentoxiflline.

    The thing that confuses me is when you read the leaflets for these meds they all seem to say that if you have liver problems you should not take them,uhh oh well have to trust the medical pros I guess, one of the biggest problems I find is the feeling of breathlessness almost daily.

    Last night had a decent sleep first one for ages,,the frightening thing about ALD was there were no signs until it hits you. Will keep posting here best wishes

  • Hi,

    Sorry to hear this, but at least it looks like you are on the mend, my problems hit suddenly with massive blood loss etc, after being told I had around 6 months to live(thats was back in 2007), I decided to get more aggresive, I have had a transplant in 2009 and I'm doing pretty well, what you have to do is ask plenty of questions, listen to their advice and stick to it, you have to lay of the alcohol, there is no doubt about that, you will not get on the transplant list otherwise.

    I found that keeping busy both mentally and physically helped(as much as I could), the confusionand lack of sleep was the worst part. Learn to enjoy every moment of life!

    I hope you get better!!!

  • Hi Christine, All I can say is stay away from the drink and take what ever the doctors tell you to. I was in the same boat 4 years ago I was so bad the doctors called my family into the hospital to say there goodbyes as he did not think I would see the night out but I got through it and after a month in hospital i made it home, The first year after was the hardest I was week and tired all the time could not sleep needed fluids drained had major depression. But I stayed off the drink and went from strength to strength. I know it is hard at the moment but there is a future, Yes i am still ill but i just do what the doctors tell me and feel better than ever. Hang in there

  • Just wondered if anyone can suggest anything to relieve the breathlessness that I quite often feel? I did hope that after my abdominal drain it would ease,can't say that it has much.

    I presume it's a combination of things, red blood cells, anxiety etc, thnxs

  • Is it a Asthma type of tighten of chest/lungs and or throat. If so ask your doctor for ventolin or/and bicotide. You might have to do a peak flow test, which is simply blowing int a tube. If not asthma best get it checked by Dr.

  • Hi Christine sorry you are so unwell, I to like you have cirrohiss with portal hypertension, varices, and nearly lost my life last year due to massive bleed from mouth, am now under kings college liver unit team where you are thoroughly tested and I really feel safe there, also have regular endoscopys here in Kent where I live every six months, you must be under a heptologist with all the conditions you have, I to used to wonder what the future held but there is no answer for that, try to keep yourself as well as you can right foods, moderate exercise like walking when you can, I know sometimes cirrohiss is very dehabillitating and sometimes energy is just not there, just rest when your body tells you to, Well done for kicking the alcohol habit, so did I and like you would never touch it again, I have learned that lesson very well, keep well and let us know how you are doing, everyone is here for you and will also share any tips that may help Kie

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