Feeling lost

[Trust78]

After loosing my grandfather and mother to liver disease sadly they were heavy drinkers but I never have been neither has my sister but we both have chronic cirrhosis. I've been under the specialist for many years and everything was ok until 11 months ago and its been exhausting and I'm still waiting while getting worse each day. I've not had any alcohol in 11 months and drink plenty of water and healthy food but back in March I had my monthly diagnostic imaging and they asked me if I had been unwell as there was a blockage, this was followed up with an MRI scan that confirmed my bial ducts were blocked so I was booked in for an endoscopy and had them trawled and the end snipped off to allow the bial to flow. I felt better but always had a bruised feeling around my stomach, after 5 weeks I could feel the symptoms coming back but the specialist said no way was that possible and my liver function was ok so I shouldn't worry. I was constantly tired I watched muscle fall off me my eyes are so sore and gritty and my stomach is like a drum and very uncomfortable so much so I hardly get out of bed, I had another diagnostic imaging scan and they found a blockage so a few weeks ago I had another MRI scan and a dexa scan but sadly I've not heard anything and the gp just passes the buck saying the hospital will let you know. In the past three weeks I have Mark's on my belly that itch so much and my belly button feels like its burning but the gp still won't help me so I wrote an email to my specialist last night basically saying everything I'm telling you sadly I'm loosing faith as I'm almost 61 I'm alone in pain and very frightened as I have a beautiful grandson who I can't spend quality time with feeling so bad. Sadly my sister is a year older than me never had a drink in her life and is suffering with many of my problems but not as drastic as she still gets up goes out ect, but I'm sure someone out there may be able to give me some insight into what I can expect or do to relieve my symptoms. My anxiety is through the roof with all this I'm just preying for a miracle. Thankyou for listening to my plight. Billy

[freddie76]

It sounds to me that as there seems to be a following in your family for liver issues that you and your family could possibly all have a connected issue with the liver.many years ago my hubby was diagnosed with liver disease and had never touched alcohol.we followed this up and most of the family tested positive for ALPHA 1 Anti Trypsin Deficiency.some of the family were just carriers but my hubby and his sister were both ZZ meaning full blown disease. He had a liver transplant which saved his life. Now 12 years post transplant.MIGHT BEWORTH GETTING TESTED FOR ALPHA 1 ANTITRYPSIN DEFICIENCY.

GOOD LUCK

[Trust78 in reply to freddie76]

Thankyou so much for the feedback

[BritishLiverTrust1 Partner British Liver Trust]

Welcome to the forum.

We're sure other members will reply soon, but if you would find it useful to talk things over our nurse-led helpline is open Monday to Friday from 9am to 3pm (excluding bank holidays). The number is 0800 652 7330

Best wishes

British Liver Trust

[PutneyGirl]

That all sounds very sad and stressful

Well done for writing an email. I find that a very polite actual, old fashioned letter, sent by registered mail (if you can get someone to take it to the post office) very effective. Copy tonyour GP with a covering note, requesting assistance. They are so unusual nowadays, they actually get read. Also registered mail has the virtue if being tracked so they can't claim it hasn't been received or went to "junk".

Good luck getting some answers.

[Readlots]

Hi, I’m sorry to hear that you are feeling so ill. You’ve already had some good suggestions on here. I’d say that you need to make a fuss, I know that probably goes against the grain. Well done for sending the email. I’d suggest ringing the hospital and asking to speak to your consultant’s secretary - they are amazing at getting things done. Ask if they’ve received your email, tell them how desperate you are feeling and ask if they can get you an urgent appointment to see your consultant. If that fails keep going to see your GP and ask them to speak to your consultant for advice on treatment. If all else fails, go to A&E. Sadly it seems that those who make the most fuss ( politely of course) get treated soonest. Hang in there and try to do something you enjoy each day.

[Chick_atee]

Sorry to hear you are going through all this. Sounds like alot! Keep asking & ring, email, write until you get answers and some peace of mind.

Don’t give up. Whoever you need answers from will eventually contact you once they get the message you’re not going away. We shouldn’t have to do this of course especially suffering with cirrhosis.

Respectful persistence usually does the trick!

Stay strong and it’s so good you’re sharing. Certainly not lonely here sharing our woes and wins with cirrhosis I’ve found.

Keep going 💪

[Trust78 in reply to Chick_atee]

Thankyou so much, sadly I've been to A&E 4 times this past year and sat for many hours only to be sent on my way as my liver function was ok, my specialist who I've been under for over 15 years sadly left without telling me neither did the clinic. I was seen by a very uncaring person who couldn't wait to get me out the door and when I called with concerns that my symptoms were back he rubbished my explanation and I received a letter saying that I had called and I had back problems! There not listening to me and I'm still waiting for my reply from my letter so fingers crossed. Many thanks for your kind words

[BritishLiverTrust8 Moderator British Liver Trust in reply to Trust78]

Dear Trust78

We’re sorry to read of the challenges you feel you have faced. Here is the link to our Patient Charter which states clearly the rights you have, in terms of your care, as a patient with a liver condition.

britishlivertrust.org.uk/li...

Your local Patient Advice and Liaison Service (PALS) in England & Wales, Patient Advice and Support Service (PASS) in Scotland or Patient and Client Council (PCC) in Northern Ireland may be able to support you further and we have attached the links below.

nhs.uk/nhs-services/hospita...

careinfoscotland.scot/topic...

pcc-ni.net/contact-us/

In Wales, contact the PALS department in your local health board area

Best wishes

British Liver Trust

[Hdon]

Unexplained liver disease with no history of alcohol abuse, have you been checked for Haemochromatosis (iron overload)? It is genetic, so runs in families and, if undiagnosed, can cause cirrhosis. Your GP can check your iron levels very easily.