My mum had been told last week she now has cirrhosis, I suppose I've joined to ask where we can get some support from, we live in Hampshire, England. My mum is 51 and my full time carer, it's a big shock for us all and I'm struggling with worry after her appt with the liver specialist. Especially as he could not give a prognosis I just keep fearing the worst is going to happen soon. She's waiting on having an endoscopy to check for varices in the next couple of weeks. What should we be expecting the drs to do? I have tried to research as much as I can but to be honest I've just scared myself. She's not been feeling well at all, very tired much more than usual, nausea, off her food, pain in back and also diarrhea (the drs don't seem to think the diarrhea is liver related ?). I just want to make sure I can support her in the best possible way. I hope this post makes some sense - I'm so sad and sorry to read how many of you there are suffering.
I live in Hampshire, and have the same. What you need is to be positive for your mum I have had cirrhosis for 5 years and I also have varacies. You can keep in touch with me via email should you need to, I am 58 so have had it for a while. your mum might feel tired but she will be able to work through this.
There are other groups out there where you can join as a carer. It is a difficult journey, at first scared and confusing. Have a look and they are there. I belong to one called Living With Cirrhosis on Facebook , you can get support at there and other groups as well as here. This site is great with some very knowledgable people.
Sorry about your mum, it is a worry for you all, I have the same disease, had it for 2 years, your mum will be checked for varices, if she has any, depending on size, they will be banded so they will fall off, she may not have any though, I can only speak for myself I did have varices in esophagus and stomach, and I was sent to see heptologist who specialises in the liver, it would be good for you mum to be referred to one of these doctors, I get regular scans on liver every 3 months and full blood counts also, so they do keep a close eye on you, all your mum can do at present is never drink alcohol, eat low fat foods, and walk at least 1\2 hour every day, good luck. Oh by the way this site is a very good support network, its good to communicate with people who understand. Annette
Hello Becca. I am so sorry to hear about your Mum. I also have what was originally diagnosed many years ago, as NAFLD - Mine has also progressed to cirrhosis. I live in rural Bedfordshire, so nowhere near you, but I go to Kings in London for my liver appointments. My disease progressed slowly, but steadily. I am pleased that your Mum is seeing a liver specialist - that is the right way to go. I find that GP's know little about the specifics. I can offer support though these pages and a few words of advice. Your Mum should be on a 'sensible' diet - nothing special, but aim to lose weight if she is overweight, and avoid alcohol (NAFLD is not caused by alcohol but it will not help the situation). Exercise little and often - just half an hour a day of walking , cycling, swimming - that sort of thing. Always get your Mum to take someone with her to the liver appointments as she might get a lot of information and two pairs of ears are much better than one. Ask for copies of all letters to the GP and all blood results to be sent to your Mum - if there are things that you do not understand - ask via this forum. Ask if the hospital she is under has a specialist nurse for liver diseases - they can give your mum a lot more time on a one to one basis (there is a vast shortage of these specialist nurses, and the money to budget for them!) so there might not be one . What she should expect, depending on discussions with the consultant and other results etc. - blood tests on a regular basis (eg 3 monthly - possibly done by the GP), regular ultrasound examinations, possibly a CT or MRI if indicated, possibly as fibroscan which measures the hardness of the liver, also she might need check endoscopies -the frequency depending on what they find the first time (I have mine every 6 months). Liver diseases are very complex and the liver has a multitude of roles within the body. You say that your Mum is your full time carer, so there are added problems which you might need some support for. We all get different symptoms - I also get the nausea and the tiredness like your Mum. I would also ask if others in your family need to have their liver function blood tests - I am one of three girls, and ironically my younger sister who is virtually alcohol free has the same diagnosis, but my elder sister who enjoys a glass of wine most days is absolutely fine - life is just not fair!!! (I last had any alcohol about 20 years ago and even then never more than a bottle of wine in total a month!!!!) Good luck and keep in touch via these pages xx
As the others say, sensible diet and regular light exercise plus avoidance of alcohol will all help. I was told I had cirrhosis after following an illness back in 2012 caused by a blood clot in my portal vein. I fretted and worried as you would expect. They gave me the "scope" and confirmed I had varices and things were feeling pretty bleak indeed. Then in 2013 they took a biopsy of my liver and it turned out there was no trace of cirrhosis (yay!) but some fibrosis and recommended losing weight and keeping alcohol to an absolute minimum. Things arent perfect and I'll be on propranolol tablets for the rest of my life it would seem, but 2 years after being seriously ill things are positive. I am still being monitored by the hospital but just once a year, my last blood tests were greatly improved and I've lost nearly 2 stone in weight (but still have a ways to go). I guess what I am saying is that both your mother and yourself should try your very hardest to remain positive, you never know which way life is going to take you. Listen carefully to what the doctors say, ask any questions you want no matter how daft they may seem, and lead as healthy a life style as possible.
This forum is a great source of support. I wish you and your mum the very best.
Sorry to hear your mums got cirrhosis, its a dreadful condition. Endoscopy is down under local to view the varices and portal vien. If some of the varices need banding they might do it then are book mum in again. They might take a biopsy as well. I run a Facebook group called living with cirrhosis. It is a worry how many members we have
I was diagnosed with cirrhosis on Thursday after a series of tests - the Doctor I saw was very very vague and I had no chance to ask any questions - feeling very unsupported by the medical professions at the moment and I just have so many concerns. I'm pleased I've found this forum - learnt more reading these than any Googling I've done so far. Feeling very down tho ...
Welcome to the forum JeanetteN, sorry to hear of your diagnosis and the fact you got so little initial support/advice from your doctor - feel free to vent on hear or ask any questions you might have. Most of us are not medics but we all have a broad range of experiences from which we can offer guidance, advice and support.
Its terrible you got such a scary diagnosis and then get left alone with your worries and fears. Are they putting you under the care of a hepatologist for further advice and/or treatment.
Thanks so much for your kind reply - no I've not been referred to anyone!! And I the post today I've got a follow up appointment for 2nd December !!!! Am I really supposed to do nothing until then??
Who is your next appointment with? Is is a hepatologist or local gastroenterologist?
That seems a really long wait if you haven't been given any information on what this diagnosis means. You should be having an ultrasound scan every 6 months, 6 monthly consultations are normal if your condition is under control. But if you haven't been told much and only a diagnosis it doesn't seem right to leave you dangling that long.
If you don't mind me asking, what are they saying is the cause of your cirrhosis? You need to prevent further damage by removing the cause or the cause needs to be being treated.
Have you any major symptoms / any symptoms of your cirrhosis. For example my husbands cirrhosis only came to light after he had a bleed from oesophageal varices and these required regular banding and regular check ups via endoscopy, he has required regular blood tests - we felt that 6 monthly was too long. His condition hit us out of the blue, he has never been a drinker and his cirrhosis has been due to auto-immune hepatitis and we wanted his bloods checked more regularly and made this request since we didn't want to be hit by another nasty surprise.
The British Liver Trust has downloadable leaflets covering cirrhosis and how to look after yourself but you need a start point and just a diagnosis with no guidance isn't great at all.
I've just been referred to the gastroenterology clinic in 6 months time!
They are putting this down to fatty liver - I think (again he was very vague!) - I had some liver enzyme leakage in a couple of blood tests last year which is why they decided to scan me. It just seems so unfair - I really don't drink a lot - can count on one hand the times I've been drunk - I know I'm overweight but really doing something about that now
I think I need to go back to my doctor. I have the BLT leaflet.
Hi the best thing is that it has been found. Things can progress slowly and worry will set in. I have been diagnosed for just over a year. It is a steep learning curve but as I said at the beginning its been found. A lot of people go undiagnosed so please be positive.
The best advice to me was give up booze. I was a light drinker so maybe it was easier for me but times like Christmas still make it a struggle even a year on. If you have a fatty liver then its about cutting out the fatty diet and lose weight. Me I'm hoping to have surgery and have a stomach bypass. Yes extreme but something I have been on the list for a long time. The cirrhosis stalled the op but I have just been given the all clear for surgery to go ahead.
I am not saying that bariatric surgery is a solution but there are things we can do to help our livers.
So if you are not getting any information then start asking questions. Write them down and ask the clinic nurse or surgeon when you see them. If an appointment is not due call the surgeons secretary and explain you would like an appointment to discuss the condition and options. Worrying will not help so ask.
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xx
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