Advice needed for very confused newbie ... Part 2

[Orchardroad]

Hello. Thought I'd start new thread rather than go all over my dilemma again. Been keeping a low profile and doing lots of research while waiting to see gp. One thing I was questioning was why I was getting no support for DCLD. Well this has now happened and it has completely floored me. My nurse was updating my records and came across a D N R notice. She has shown it to me and there is a three sentence paragrago which begins "she wants to get better but fully undertands that ..." The rest is illegible.

The date is when I know I was mentally fit and would have remembered something like this. It is not signed by me or anyone else.

Do you think this is why DCLD care is being side lined?

Sorry to sound like a drama queen but this has really shaken me up.

[AyrshireK]

I think you need to have a chat with your GP whom you say you have a good relationship with regarding your Addison's Disease. You need a double length appointment and need to discuss what the situation was when you were in hospital as you had so many other things going on then which could have influenced test results etc. You need the DNR removed from your records.

You need to ask whether you had an acute liver episode i.e. alcohol induced hepatitis or was it to do with the sepsis and other issues you were having which can mimic end stage liver disease symptoms.

You don't have/didn't have decompensated cirrhosis if you don't/didn't have ascites, varices or bleeding.

You need a good long chat with your GP. You also need an ultrasound scan to look at your liver now. That should establish whether you have cirrhosis or not and also, if they are saying you do have cirrhosis then you should be receiving a 6 monthly scan anyway to check the liver for changes.

We really can't help with this only offer advice, your doctor is the only one who has access to your files and can see what is going on and do appropriate testing.

Even if you did have decompensated liver disease they can't just shut the door on treatment for you - you've played your role in stopping drinking. They are often more protective of finite resources (lets say) if you don't do anything to help yourself and there is then a reluctance to pull out all stops to help. This doesn't seem to apply in your situation.

Get a good long appointment with GP, take a notepad with list of questions and go in forearmed to get the answers you need.

All the best, Katie

[Orchardroad in reply to AyrshireK]

Thanks Katie much appreciated.

[Hidden]

Hello Orchardroad,

To have 'Do Not Resuscitate' in your medical records, apparently without your knowledge needs to be addressed. There are some actions you can take that should resolve the situation. You can contact your GP and ask for advice, you can contact the consultant or there is the Patient Advice and Liaison Service (PALS) at the hospital responsible for your care. You should be able to call your hospital and ask to be put through to PALS without any difficulty.

PALS can resolve concerns directly and quickly by liaising with staff or management at the hospital where you receive your care.

In the meantime, any concerns about your diagnosis and symptoms should be raised with your GP or the hospital consultant / medical team. Although there is excellent advice and support form fellow members of this forum, this can never replace your own doctors who know you, your history and current situation.

If you need to speak to someone from the British Liver Trust about your health, you can phone or email directly to our experienced and qualified nurse on the help line. 0800 652 7330 between 10am and 2.45pm Monday to Friday (not bank holidays) or email [e-mail] (emails can be sent at any time and are answered during helpline hours).

Best wishes,

Volunteer moderator

[Orchardroad]

I am replying to myself here as can't get my msg to work.

Thank you for all your advice. That is precisely why I posted. I probably didn't word it well but only mentioned Addison because of the obvious lap over. Addison does not have grades, cirrhosis does 3 being end of. I was told last night that this D N R is only given to end of life patients with a 6/12 month lifespan so now I am coming with a disease that has already killed me. No one even told me that. Anyway as you can imagine I have a lot to do and find out. Might pop my head in if I get anything of interest.

Thanks again for the help.

[AyrshireK in reply to Orchardroad]

Don't live as though you are dying as that is nonsense. You arn't describing any symptoms that would indicate you are in the late stages of liver disease. (Cirrhosis is classified Stage 1 & 2 (compensated), Stage 3 & 4 (decompensated) - to be in the stage 3 or 4 bracket you'd be presenting with ascites +/- varices (stage 3) or bleeding +/- ascites (stage 4). None of which you've mentioned having so somewhere along the line wires have become crossed).

You need an appointment with your GP to iron all this out. If they are saying you have cirrhosis then you need a scan to check your liver (this is standard care with cirrhosis - ultrasound scan every 6 months). This scan will then give you more information about the state of your liver.

Don't go by prognosis of time - no one can tell you that at all. Some of the tests like they UKELD Score (United Kingdom Model for End Stage Liver Disease) can give an indication based on various blood results but it is only a statistically tool.

My hubby presented with cirrhosis - decompensated with bleeding in April 2012. All these years later he is compensated with no major varices, no ascites, no jaundice, no bleeding and generally only minor HE symptoms (plus other symptoms of a liver that isn't doing all it's 500 jobs but enough to keep him going).

You must get that GP appointment and get this situation sorted out, live life to the full, you feel good without symptoms then make the most of it.

I do hope you get some proper answers from your doctor a.s.a.p.

Katie