British Liver Trust
12,050 members5,954 posts

Effects of Cirrhosis on my life, Medical records not to mention my health :-(

Hi All,

I hope you are all having a great break wherever you are...

When I had a liver biopsy, nearly 2 years ago, it was to test if I had autoimmune hepatitis, after some of my blood results. They told me, and also swore it was not and would not test for cirrhosis. At that time I was both too weak and too ill to understand and take it on so didn't want it testing and made a point of it. So a couple of weeks ago when a medical secretary told me over the phone that I had 'established cirrhosis' I was shocked and dismayed...to say the least, but angry as well.

I have been now referred to see a hepatologist where I am sure I will get some support with my diagnosis. But regardless, I didn't want this on my medical record at all. I would like to at some point move to the US to be with Family and I am sure that I will never get any health insurance now! Does anyone know anything about this or have any advice? I realise this is a bit niche...

Thank you!

22 Replies
oldestnewest

Hmm no doctor should be saying it's not such a thing if they haven't tested for it and a biopsy is a sure way of diagnosing cirrhosis are you sure you heard right, because you do mention you wasn't very well at the time they were investigating ... And as for a secretary telling you 2 years later you have advanced cirrhosis it doesn't add up for me , are you suffering with h.e and not realising? Because we hear what we want when we have that... And as for America why would you even consider that if you have been diagnosed with something so severe as cirrhosis?

2 likes
Reply

And you did miss my sentence about moving to the US and family...

Reply

I have just read your previous posts and there is not a chance on earth they would of told you they wasn't testing for cirrhosis especially if you have been an alcoholic.... I think you need to see your GP you seem very confused to me

3 likes
Reply

I am absolutely positive. I talked this through and through with them and they were not testing. I was to find out about about autoimmune hepatitis because my blood results were quite confusing. And I was not alone when we discussed what they were testing. The Secretary told me I have 'established cirrhosis', not ''advanced cirrhosis'' - quite a difference there jojokarak. But you seem very adept at offering diagnoses here, so why bother with seeing me GP? No I didn't and don't have h.e. Do you perhaps?

1 like
Reply

Lol nope I post but your posts are a bit all over the place and confusing and your angry in your response that's why I mentioned h.e why wouldn't you think they wasn't going to test you for cirrhosis when alcohol and bloods were involved you must be very naïve or want to bury your head in the sand or sue the NHS.... But you need to concentrate on getting better and there's not much difference between established and advanced cirrhosis really they heading in the same direction so don't be angry at the world or the doctors just concentrate on you and what you can do now always hope

3 likes
Reply

No, I knew exactly that I had so much damage to my liver but I did not want that diagnosis on my record. It is really a bad thing for the US. We knew exactly that they promised that they would not text for it. I didn't realise their was not much difference between established and advanced cirrhosis. Why they bother with two words... A bit like compensated and decompensated? I'm not angry at the world or the doctors. I was rather miffed with you for coming onto this forum an swinging your words and thoughts around a place which is supposed to be about positivity and support. Not accusing people of having h.e. burying their head in the sand and being angry at doctors when you know neither myself or my medical history.

2 likes
Reply

I agree..accusing someone of having H.E isn’t the best way forward. But also bickering isn't on either on this site. Maybe you and Jojokarak best not be in touch. Good luck anyway.

3 likes
Reply

H.e. is a very realistic complication off cirrhosis so I don't think it's out of order I think being aware of people and caring for them is what most humans should do and because her posts are very confusing that's why I suggested she go and see a doctor

1 like
Reply

I understand but I felt you were not sympathetic.

1 like
Reply

It's hard to tell how anyone is with text over the internet. All anyone can do is ask or answer questions as best we can I am not responsible for how someone reads that just like I am not responsible for someone's emotions 😁

2 likes
Reply

We are all responsible to help the others with consideration and careful words if they are distressed. Anyway we beg to differ and I know you have probably contributed a lot in the site. All the best

2 likes
Reply

Thank you Bobbycat

1 like
Reply

Hi Charleeeee,

I'm sure this was an upsetting and scary experience, and I definitely think you need some good help, support and guidance right now.

I'm afraid it's an area I don't know much about, so all I can do is say that I am thinking of you and hoping that someone will come on here, soon, who can give supportive, compassionate and useful advice.

Meanwhile, why not send a post - or phone... - someone at the BLT (British Liver Trust) who run this helpsite on 'HealthUnlocked'? There is link to their website at the top of the page, and you will find all the necessary contact details there. Also, I would wait until your GP's surgery is open, and see your GP and ask them to tell you what exactly was done 2 years ago, and what it does, and does not, say on your medical records. You may be worrying, when it is not necessary.

Take care, look after yourself until you can contact someone helpful, knowledgeable and supportive. Meanwhile, try to spend the time doing something that you enjoy, that is good for you, healthy, fun, and which will help you to relax and put this aside until it can be dealt with properly.

Thinking of you,

Grittyreads xx

4 likes
Reply

Thank you so much Grittyreads! I did ask that medical secretary who was going to send me a copy of the diagnosis letter so I will give her a try again after christmas as nothing has come yet, and I am hoping my GPs letter to expidite my referral to the hepatologist will speed up me seeing someone who understands all of this.

I the meantime I'm going to try and enjoy my time eating healthily, excercising and seeing my friends over the holiday. I hope that you are enjoying yourself too and had a lovely day yesterday. :-)

I'll keep you posted!

C

:-)

4 likes
Reply

Hello,

We would like to remind members of the forum of the purpose of the group.

We are here to provide support and advice to others dealing with the effects of liver disease.

This is not the place to make any diagnosis based on their request for advice or support.

Thank you.

British Liver Trust

4 likes
Reply

Lets deal with the insurance issue. Before any insurer will insure you they will want to know the risks to determine whether they will insure you and for how much. In seeking medical insurance you will have the obligation to declare any pre-existing conditions irrespective of whether you knew you had them or not. Now i know that may sound a bit daft but hear me out.

The text below is an extract from the financial services ombudsman's website on this issue:

"... to consider a condition was "pre-existing" within the meaning of a policy, we take into account the following considerations:

the intensity of the symptoms;

the seriousness with which they were regarded;

whether the consumer was undergoing tests or had been referred to a consultant;

the eventual diagnosis;

any treatment given;

the extent of the connection between the pre-existing condition and the condition that gave rise to the claim - and the foreseeability of this; and

whether the consumer could reasonably be expected to have been aware that they might have to make a claim as a result of the symptoms."

So irrespective of whether a formal diagnosis had been attained, you would have had to declare that you had sought medical advice for the problems you had been experiencing. From your earlier posts, and by the definition above, I believe they would reasonably be considered to be symptomatic of a pre-existing condition. If not, should you have made a claim the company may well have invalidated it and not paid out. That would leave you in a whole bigger heap of trouble than you may now face.

The thing with insurance companies is, you have to be honest with them. The more info they have the more they can understand the possible costs involved and, should they offer you insurance, the cheaper it will be for you. Its all about managing risk. Don't get me wrong, it will be much more difficult to get insurance and it will cost you more than if you didn't have any form of liver damage. Indeed, i'm sure some companies wont want to insure you. But, that would have been the case irrespective of whether you had the liver biopsy or not. So having the biopsy has probably actually done you a favour.

You mention that you insisted that they didn't test for cirrhosis when they did the biopsy. Unfortunately, i'm not sure that's possible to do. If they needed to do the biopsy to discount AIH, but in doing so the lab found signs of cirrhosis, then they would be duty bound to include their findings in the report. They don't specifically test for cirrhosis, its just an observation of what your liver structure looks like under the microscope. They'll just report what they see. But, its better knowing than not and its in your favour in all circumstances to have that information. If nothing else it will stop you invalidating any insurance claims because you hadn't declared a pre-existing condition. But, it also gives you the chance to be able to do something about it.

The full text from the financial services ombudsman can be found on the link below:

financial-ombudsman.org.uk/...

4 likes
Reply

Hey Kristian,

If I have to go to the states with work or to visit my family, do you know what I should do about travel insurance?

Thank you!

Charlotte

Reply

Charlotte, the British Liver Trust hold a list of insurers who 'might' insure (if you drop them an email or phone the helpline they will probably send you these details out) - often it is a case of shopping around.

Katie

2 likes
Reply

Thank you Katie! I'll drop them an email in the New Year when eveyone is back from their holidays!

Charlotte

1 like
Reply

Thanks for addressing my original post Kristian, you are indeed a wealth of knowledge!

I think that maybe like you said, they found it as a function of testing for AIH and were duty bound to report it. For insurance I would have put down something like that I have liver damage/hepatitis but controlled anyway before the biopsy, I'm quite sickeningly honest. And well, I haven't yet got to move to the States, perhaps I may never, but I think its better to look into this now before I walk into something with my eyes closed. Goodness knows whether I'd ever find someone that would insure me!

At the moment I am waiting for a fibroscan and a specialist so I can understand the extent of my cirrhosis, I think that might help to ease all my worries. Did you have a good Christmas? We did, and I managed to get through it with flu and chest infection, I think the worst is that I could take no painkillers for my headache and temperature! I've not managed to go walking or climbing for 10 days now, but I'm just starting to feel better so I thought I'd be best waiting to get rid of it completely - the last thing I want is pneumonia right now! Have you been out much?

I hope everyone is enjoying their holiday and that we can all go into 2018 feeling bright and positive :-) Much love and happiness to you all,

Char x

Reply

Whichever way you look at it medical cover in the states is expensive. However, with a liver condition and a potential diagnosis that you have it will be even more expensive, if indeed you can even find insurance. Particularly for any long term stay.

I'd go with Ayrshire K's advice and go to the specialists. I did have a bit of a play on one of those price comparison sites and it was looking rather expensive for anyone with cirrhosis. Much cheaper if it hadn't progressed that far. Even so, the insurance was still cheaper than any hospital visit would be.

1 like
Reply

Great stuff Kristian, for now its most likely just for a week with work and a week of holiday on the end of that... The States is mental for hospital prices, I do know that!

Reply

You may also like...