UNKNOWN RESULTS

[kellys66]

I was handed my endoscopy results today, and shocked at what I had read, I knew I had liver cirrhosis, but it said ASA grading: patient has mild systemic disease and hepatitis C cirrhosis , I am trying to find out if I had this problem before hospital,

[AyrshireK]

Hi Kelly, sorry to hear you have received this bad news which will obviously have come as a shock.

Just to explain some of the terms above the ASA grading is the assessment of a patients fitness for endoscopy to take place and grade 2 is the 2nd lowest level of risk and is described as :- Mild Systemic Disease, No Functional Limitations, No acute problems. Some patients who are more seriously poorly would be at greater risk during surgery or endoscopy procedures.

As regards the Hepatitis C this is obviously a new diagnosis for you and together with the cirrhosis this needs serious and urgent follow up.

Have you now been referred to see a liver specialist at a liver hospital?

Hep C needs to be treated (and can be) so this all needs follow up urgently. Your care to date seems to have been rather lacking if you haven't been told all these things before now despite having had hospital treatment previously for the other symptoms. Blood tests should have identified the Hep C infection.

There are specific support sites for Hep C, someone recently mentioned this one in another thread :- hepctrust.org.uk/ .

Push for referral to a liver specialist - hepatologist. Make the request verbally but also in writing so it is added to your file. It looks like you have been badly handled to date.

I don't have any expertise in Hep C, there are others on here living with it but I do wish you all the very best for future care.

Katie x

[kellys66 in reply to AyrshireK]

No not yet Kate, I'm not sure what's happening I've also realised today that I haven't been given medication since leaving hospital on February 24 ,thiamine, spironolactone, strong vitamin B

[AyrshireK in reply to kellys66]

Are you still due to see your doctor on Friday? If so, have you got someone who can go with you? Two pairs of ears are better than one plus it helps so you can discuss things later.

Write down a list of questions you want to ask. Hubby and I always go to appointments together and we always take a list describing his current symptoms, current meds and questions we want to ask.

You need to push as I say for an urgent referral to a hepatologist, Are you in the UK if so there is a list of liver units on the BLT website, perhaps you can see which is closest to you and ask for a referral to your nearest. britishlivertrust.org.uk/li...

Hep C is a contagious condition so you should take precautions to look after yourself and loved ones, a good guide is at webmd.com/hepatitis/hepc-gu...

Please get the help you require to prevent a worsening of your condition, Hep C is treatable and there are various positive stories on here of people who have had good results from the various medications/treatments available.

I wish you all the very best.

Katie x

[kellys66 in reply to AyrshireK]

Thanks Kate , I'm a bit puzzled how I got hepatitis C from drinking

[AyrshireK in reply to kellys66]

It would be impossible to get Hep C from drinking but body fluids particularly blood can transmit it. Be prepared for personal questions as treatment goes on - any sort of risky sexual behaviours, unprotected sex, intravenous drug use, tattoos done before current hygiene and safety standards came into force, previous medical care in foreign regions and or blood transfusions in UK (a lot of people on here infected by 'tainted blood').

First off they need to confirm a hep C diagnosis and treat that, or identify if a mistake has been made along the line. Does it definitely say Hep C? Hepatitis in itself just means inflammation of the liver and there are numerous viral ones (the alphabetical ones) plus the liver can be inflamed due to alcohol, auto-immune conditions and more.

You need lots more information from your doctors on this one.

Katie

[kellys66 in reply to AyrshireK]

Yeah it does, it didn't come up when I had a blood test with the doctor originally when sent to hospital nor did it come when I had a blood test in hospital, when I went back for a follow up a week later they said it was infected. And treated it with antibiotics, it doesn't sound right to me ' I haven't any bad habits that would cause it

[AyrshireK in reply to kellys66]

It obviously needs rechecking as a matter of urgency. As you say absolutely does not sound right. Hepatitis possibly yes i.e . liver inflammation but Hep C ????? Remember can be medical treatment, older blood transfusions and such like, medical treatment abroad .... not always bad habits.

However, why is it allegedly being picked up then not, doesn't sound right and as I say needs re-checking urgently.

I am not being judgemental here but are you still drinking? Some medical professionals arn't as professional as they should be when they think someone isn't looking after themselves and sadly a lot of those with liver damage face this (even tee-total ones such as my hubby have had negative experiences with docs and nurses who have assumed very wrongly that his illness was self-induced). You may be encountering a bit of this poor treatment if you are meeting folks who are blinkered to the many causes of liver ill health. Even if you are still drinking they should be helping you properly.

If you are going to doctor on Friday, seek clarification, request blood tests to rule this in or out. Don't know what else to say really. Go in firm but not aggressive and demand some answers, your care to date appears to have been woeful.

Let us know how you get on at the doctors on Friday.

All the very, very best to you. Katie

[kellys66 in reply to AyrshireK]

I haven't had a drink since diagnosis' I won't deny I was no Saint in the past , I used to work 12 hours a day, 7 days a week, a few pints after work, I suppose it all ads up, thanks for the talk Katie

[AyrshireK in reply to kellys66]

Best wishes, keep in touch.

Katie

[susie61 in reply to AyrshireK]

I was diagnosed 4 yrs ago 4 liver transplant after successful sustained Hep C had destroyed my liver. I have been on successful medication all of 4 yrs and am 1st on list but MELD (mayos end stage liver disease) score is holding at 18 or 19. If it goes to 21-23 will transplant new liver but my clotting factor(INR) needs to be alot better. Anyone know how to lower INR?

[Hidden]

Sorry about this Kelly. Drinking is now off the menu and unfortunately drinking and Hep-c is almost certain the lead to Cirrhosis. Any ideas as to how you got it? a blood transfusion? you may also have to get family members or previous partners to get tested, you can get it through intercourse(rare though) and things like using someone elses tooth brush, anyone who has perhaps tended to a cut or graze you have had

[AyrshireK in reply to Hidden]

I think the issue is Ralph there has been no sign of Hep C on blood tests and then today Kelly gets some paperwork which for the first time mentions Hep C. She isn't even certain she actually has this condition. As i've advised she needs urgent testing and confirmation or otherwise of this diagnosis.

Sounds like Kelly has had rotten treatment to date.

Katie

[Hidden in reply to AyrshireK]

strange, but i dont think they would put it there by mistake?

[kellys66 in reply to AyrshireK]

I'm a he , if it wasn't put there by mistake, why wasn't it shown before ' read previous

[AyrshireK in reply to kellys66]

Sorry Kelly for the gender error, many apologies