Pain, A&E and ignorance

[Bazinga89]

Hi all. I was totally fine all time but 2 days ago I've been taken to hospital with huge abdominal pain and blood voniting. Had 4 times transfusion and been told that I had 5 varicies banded... keep asking dotors is becouse my liver getting worst but never get an answer as my FLT are normal. So worried that I got stage of cirrhosis but they don't care about it. Is possible that varicies have nothing in common with liver getting worst?

[carmik]

Hi

This is not right to be left like this.

Are you registered with a Bona Fidi Liver Clinic.

If not get this done via your GP immediately.

My husband was left over 4 years with a Gastroenterologist ,who, unfortunately, was not clued up on Liver issues. Got transfer to Liver Unit. Was transplanted18 months later.!

Now 10 years post transplant and fine!

[Bazinga89 in reply to carmik]

Thanks I dont know if I can be registered there I'm from Scotland. Also my GP is totally useless person.

[AyrshireK]

Have you tried to contact your liver nurse? I believe you have access to one from your earlier posts. Bleeding from varices is often a sign of the more serious end of liver disease.

I know they have never outright said you have cirrhosis but I think at this stage you need to ask that very question i.e. IS THIS CIRRHOSIS? I know they seem to have soft soaped with terms like advanced fibrosis and bridging fibrosis.

If you can you want to contact your liver nurse and ask the question outright. You need to know for sure 100% and if so as we've discussed in the past you need to be getting appropriate cirrhosis care.

Just because your liver function tests are normal it doesn't rule out cirrhosis and needing that amount of transfusions following a bleed is pretty serious.

Ask the question and ask if you can be referred to Edinburgh for a second opinion. Put it in writing if that helps (plus it goes in your file and if all goes pear shaped you have raised that question in writing). Sometimes the squeaky wheel gets the most attention and it's ok to gently push.

Katie

[Bazinga89 in reply to AyrshireK]

Hello. I am still in hospital. Talked with 2 doctor and straight said what are my questions. But they didn't give me any scans for liver.

[AyrshireK in reply to Bazinga89]

When my hubby was first diagnosed with cirrhosis it was because he had a massive variceal bleed from 7 burst varices, he was in hospital for 3 weeks as they first had to stabilize him then try to ascertain why he had cirrhosis. Whilst in he had endoscopy, ultrasound scan and biopsy (as a non-drinker with no previous liver history they wanted to find out cause). He also had deranged bloods plus his endoscopy showed portal hypertensive gastropathy in his stomach.

Next time you have chance to ask a doctor - ask them outright. Can you confirm is this cirrhosis? You have a right to know your actual diagnosis.

Katie

[Bazinga89]

I had massive bleeding too... im still in hospital and I asked all of questions. They said they will check that. My blood tests beside of platelets are completly in normal.

[Hidden]

Hi and welcome,

As you are still in hospital we would echo what the other forum members have said and suggest you request to speak to the senior consultant in charge of you care and clarify diagnosis and a plan forward.

Good luck and keep us posted.

[Fibro2021]

One of the misconceptions of many commentators is that varices and bleeding are solely associated with cirrhosis of the liver. Unfortunately, actually, it is a bit unclear. Varices and bleeding from them are directly related to portal hypertension (PH), which can develop at the pre-cirrhotic stage of liver disease or without fibrosis at all (for example, with non-cirrhotic portal hypertension NCPH). In any case, whatever it is, proper prophylactic treatment of portal hypertension is necessary after the bleeding has stopped. This may be medical therapy with beta-blockers or the TIPS procedure as an alternative.

[Habfdh in reply to Fibro2021]

Yesterday I got a letter from my specialist telling me that I had portal hypertension and that the liver was not damaged. Knowing I've been diagnosed with cirrhosis, and now he says no, I'm confused.

[Fibro2021 in reply to Habfdh]

It's not entirely clear how you were diagnosed with cirrhosis. Was it a biopsy or a fibroscan, perhaps characteristic cirrhotic changes on ultrasound or MRI?

[Habfdh in reply to Fibro2021]

It was fibroscan,and I'm waiting for endoscopy for liver.

[Fibro2021 in reply to Habfdh]

What is the stiffness (kPa) of the liver according to fibroscan?

[Habfdh in reply to Fibro2021]

Actually I don't know, the Specialist told me there's cirrhosis and varices.That's all I know. And yesterday got letter from specialist told me there is no damage in my liver but there is non portal hypertension.

[Fibro2021 in reply to Habfdh]

Thanks for the answer. Probably meant non-cirrhotic portal hypertension, as far as I understand the situation.

[Habfdh in reply to Fibro2021]

non-cirrhotic portal hypertension،what does it mean. Thank you.

[Fibro2021 in reply to Habfdh]

In short, this is portal hypertension in the absence of liver cirrhosis. As a rule, this is linked with vascular liver disease, but not only with this.

[Habfdh in reply to Fibro2021]

Thanks for replying,I'm having many problems such as spleen and Platelet deficiency.

[Bazinga89 in reply to Habfdh]

I have same but biopsy shows no cirrhosis

[Alibaba80]

It is possible to have severe liver disease and relatively normal LFTs, like myself. You really need to push for a biopsy as my scans are normal aswell. It is only the biopsy that will determine the true state of your liver. I have Nodular Regenerative Hyperplasia which is microscopic and not seen on scans

[Fibro2021 in reply to Alibaba80]

I have the same situation but as far as I read Bazinga's previous posts, a biopsy has already been done and it showed severe bridging fibrosis of the liver, if I'm not mistake. Portal hypertension is generally thought to be associated with cirrhosis, but in some patients it may present in the pre-cirrhotic stage of fibrosis, especially in ARLD-related fibrosis as described.

[Bazinga89 in reply to Fibro2021]

You are right, I had biopsy and it says severe fibrosis. I spoke with my consultant and he told me maybe more scarring are occuring and that was all his information :/

[Bazinga89]

UPDATE Doctor said that my liver needs time to reheal also varices could appear becouse last year I had inflammation in my stomach.