one day at a time

[Allotmentlotty]

hi.

I was diagnosed 2 years ago by GP. Referred to Hepatology. Took 11 months for Fibro scan and was told that day it was Cirrhosis. None alcohol.

I’ve never been a big drinker just on occasions.

Cut out adding salt 42 years ago when pregnant with first baby. Grow All our own vegetables as we have allotment Diet is practically no fat healthy Diet. But still I gain weight.

I have days when all I want is sleep my can’t be arsed head rules then I’m afraid.

It took me 6 months to come to terms with the situation I found myself in. My husband is great he’s read the cirrhosis notes on Liver trust site and is my crutch.

he understands I need space even before I do.

my next 6 month checkup Scan Bloods. Are due next week and fingers crossed nothing has changed although I have noticed slight changes tingling is getting worse. Dry skin. Headaches. earache. Tummy is bigger. And fatigue is more often.

i am not a winter person and feel the cold even more nowadays.

bring on the spring so I can potter around at allotment.

I keep my brain active by adult colouring which definitely helps.

we have a giant Breed dog Leonberger. So I get out for walks every other day. Husband bless him goes every day in all weather.

I am 68 tomorrow and I never in my wildest dreams thought I would get ill. I’ve always been fit and healthy how I got Cirrhosis to me is still a mystery.

have a great day everyone. Live for each day. Stay positive. Look forward to better days ahead.

[Smegmer]

Sorry to hear of your shock diagnosis. You did everything right and still got ill, are they going to perform tests to find out what the cause is? Although it doesn't change the issue, surely they need to know the cause to find the best treatments for you.

It could possibly be an autoimmune disease that has since become dormant, sometimes, they never find out though.

[Allotmentlotty in reply to Smegmer]

Thank you for your reply.

I see my consultant in February after my tests. I will be able to ask questions about it. When I had my initial appointment I was in shock. This time I will have someone with me to help me along.

[Smegmer in reply to Allotmentlotty]

Some find it helpful to write down some questions before a consultant visit and write the answers down.

Some ideas:

1) What is the cause of the Cirrhosis and is it ongoing?

2) What is the condition of my liver? How is it performing? What is the MELD score?

3) What treatments are available?

[Millie09]

Thank you! you sound like your doing well , day to day with cirrhosis is like a rollercoaster ride . Was diagnosed 16 years ago and I cannot still believe I'm still here!! .mine was alcohol related, I too try my best to stay active although I do have other illness besides cirrhosis, Osteoarthritis in my left hip and knee and lumbar spine, neuropathy in both legs so takes it toll ,most days I'm asleep by 4pm , I just nod off as most of my energy is zapped by then . I have 3 crazy cats whom keep me company and I love to bits ,I read , follow the news daily, I went on holiday last year and going away again this June.. I'm 63 in March yet my head is still in its youth lol .. we can but do our best .. keep up the good work 👏.. Linda x

[Allotmentlotty in reply to Millie09]

I also have osteoarthritis. Sleep Apnea. Type 2 Diabetes. And recently diagnosed with asthma.

Some days are a real struggle but I try hard to carry on. Listening to my body is the way forward. What I can do one day I can’t do the next

[Millie09 in reply to Allotmentlotty]

Yes im pre diabetes, asthma etc.. like you I have to manage on a day to day basis but you are doing great x

[Allotmentlotty in reply to Millie09]

Thank you. It’s reassuring that after all the time you have been diagnosed your still fighting on. So well done you. X

[Millie09 in reply to Allotmentlotty]

Thank you so much xx

[Jasper05]

I wish you well and a happy birthday x

[0range5520]

Hello,

I can relate to your shock diagnoses as I was diagnosed 2 years ago following a fibroscan, non alcohol too. I went in a bit of a mission to get answers, but there aren’t any. It was partly because I was mystified and partly because I wanted to know how I could help prevent the cirrhosis getting worse. The consultant has classified it as cryptogenic, probably caused by fatty liver, my bmi was 22 (he said in 5% of cases people are within range and still get fatty liver), recommended losing 10% of weight as this would do no harm. ( this is obviously relating to me and may not be recommended for some). I have bloods and US every 6 months and waiting for a review fibroscan.

[mickeymouse42]

Do you know what tests you have had? Your mention of fatigue could point to a number of issues which your GP could check: thyroid disease and low Vitamin B12 levels would be the most obvious.

Do you know your CAP score result from your fibroscan? If you have fatty liver disease, it would also make sense to get your cholesterol levels checked by your GP; fatty liver disease often results in elevated triglyceride levels.

Do you have any other symptoms (e.g. digestive issues)?

[Allotmentlotty in reply to mickeymouse42]

Hi I had fatty liver for 4 years before Covid.

No one advised me of what to do apart from Diet change. But as my Diet was good mostly fat free no salt Ltd Dairy. Tests got put on back boiler due to not able to get bloods done. My cholesterol has always been 3.6 up until now it’s 4.3. So not too high.

Tested border line under active Thyroid.

B12 ok too.

Iron was up on last bloods 3 months ago.

Next bloods scan early February Then Consultant appointment

[mickeymouse42 in reply to Allotmentlotty]

Do you know your CAP score? Have you had your ferritin levels checked? It's worth getting access to the NHS app so that you can see your exact results; your CAP score should be in there.

[Sunnyskies33 in reply to Allotmentlotty]

You mentioned iron being up. Have you been tested for genetic Hemochromatosis? That can cause liver damage and the cause can be treated. Your ferritin might be elevated in that scenario as well. Wishing you the best!

[carmik]

Hi sorry to hear this. You need tests to see why you have cirrhosis.Just in case it has been caused by one of the hereditary defects that can be passed down the family. This is what caused my hubby to need transplant.Alpha 1 Anti trypsin Deficiency

GOOD LUCK

CAROLE

[Greenmarket]

What did they say about the Anti trypsin and liver disease connection.please?I have liver problems ,and I am a carrier for Anti trypsin,but because I am only a carrier,it's ok shouldn't affect me,but I'm wandering maybe it does.i am just been told so many different things.