confused and scared

[suzylincs]

hi,ive only just found this brilliant website,and been reading all youre posts with great interest..i too was diagnosed with nash cirrhosis following a biopsy in nov 2014.just recently been back to dr after waking with blood in my saliva with regularity [he told me to go dentist].and now since xmas wake with un predicted heavy nosebleeds that start for no reason usually in middle of the night. and just pours like a tap.and lasts for 20mins or so..right nostril only..ive read this is common with cirrhosis,although my dr seems to know nothing.was wondering if anyone else has come across this?.next specialist appointment is in april.

[chris2591]

In my experience the gps knowledge of liver problems is not extensive.If you need additional advice ask the doctor to contact the specialist on your behalf via email.They will be able to advise you.

The other thing you could do is contact the specialist directly if you dont get any joy from gp.

I have found that its necessary to be a bit proactive sometimes in order to have your questions answered and get the right treatment.

[suzylincs]

thank you so much for youre reply,dont feel so isolated now.

not taking any allergy medication,altho i do take a whole load of other stuff for diff illnesses..main thing cronic backpain due to a fall 2yrs ago.which makes it difficult to 'excerscise' like they tell me.-abdomen swollen like afootball. funnyside ppl think im pregnant @ 56!.

will keep plugging away at dr.many thanks all.and keep posative.

[AyrshireK]

Hello Suzilincs, welcome to the forum, hopefully you'll find a lot of help and support here and also use it to blow off steam, ask questions etc. It is good with this condition to know you are not alone.

My answer is going to be long and thorough - for that I apologise but I am trying to help with the confused aspect of you post. I don't want to scare you more than you already are but there are elements of the symptoms you are describing which are a bit scary and I feel would indeed warrant some medical intervention.

You are right in saying that both nosebleeds and bleeding gums are symptoms of cirrhosis, according to the British Liver Trust website these both occur when the liver is beginning to struggle with its many functions. Blood clotting is an issue with cirrhosis and it can be difficult to stop even small bleeds so big gushing nosebleeds are a concern. Bleeding gums likewise are a possible symptom. Don't mean to be personal or to scare you but have you checked your stools for any signs of blackening or fresh blood? As bleeding from varices can be indicated by the passing of blood in bowel motions as well as bringing up blood from the mouth.

Other symptoms associated with cirrhosis are detailed on the BLT website page britishlivertrust.org.uk/li...

It looks like you are getting very little joy from your GP, my hubby gets that if he goes about things which may or may not be related to the liver i.e. we get "Well you do have advanced liver disease, it's to be expected with advanced liver disease!" - not very helpful.

If what you are experiencing are fresh symptoms which your specialist isn't aware of I personally feel that April is too long to wait, these could possibly be indicatory that your liver is beginning to struggle a bit more and that some treatment options need to be explored. If you have your consultants details or secretary's details i'd give them a bell and explain what's going on. My hubby's local consultant has always said "If you are worried about anything, get in touch and we will always fit you in!". My feeling is you should perhaps be being seen before April, if the bleeding persists you could get anaemia leaving yourself even more run down plus if these are warning signs that something else is going on it needs to be spotted early.

Push for an earlier appointment, be pro-active in managing your own care, if something different is happening then it needs looking at.

What has been said about your swollen tummy? This too could be a sign that things are not going too well, ascites is the build up of fluid in the tummy and causes folks to look pregnant, this is a sign that the liver really is struggling and it is dangerous as the fluid build up causes pressure on other internal organs, can cause breathing difficulties as lung expansion gets restricted and the fluid can also become infected. Most people with signs of ascites take diuretics and get regular drains.

From the things you are describing your liver could be struggling a bit at the moment and I really would urge you to try and get an earlier appointment.

As regards tamrakat's recommendation of supplements I would urge you not to take anything that is not prescribed or ok'd by your specialist. Additional vitamins, minerals, supplements and even homeopathic, herbal or other such alternative treatments can be harmful if your liver is badly damaged. Avoid all over the counter type meds unless they have been ok'd by your liver doctor.

Sorry if I have added to your anxiety but everything you are describing needs closer and specialist examination, I am not a medical professional just a caring wife who has been looking after hubby who out of the blue got a diagnosis of advanced cirrhosis due to an auto-immune liver disease (April 2012) & is now awaiting a transplant. Knowledge has only been gleaned from our own experiences and research so I freely admit I don't know it all. Please, try and get yourself an earlier appointment so that you can get answers and possible treatment for the issues you are describing.

All the best to you, keep in touch.

Katie x

[suzylincs in reply to AyrshireK]

thank you katie for youre frank comments,i appreciate that and its what made me post in the first place,ive a doc app on thursday and i dont intend to be fobbed off..many thanks once again,and hope youre hubby managing to keep positive.kind regards.xx

[Karlacairns]

Hi my sister had a liver transplant 11 months ago , she to had Numours internal bleeding / nose bleeds . Please don't leave it , if your GP don't help you ask to be referred back to the liver transplant team , let them be the judge as they are the experts , my sister kept having flu like symptoms also and a very bad cough . Good luck xx

[suzylincs in reply to Karlacairns]

thank you so much for youre comments.have a doc appointment thursday,and dont intend to be fobbed off.hope sis is well and recovering.xx

[Karlacairns in reply to suzylincs]

Good on you keep strong xxx