I'm begging for explanation

[Faithfull]

Please everyone I'm sorry but I'm asking again as I think I worked it out please .

[Faithfull]

Rest of my post sent it by accident

[Faithfull in reply to Faithfull]

Done it again been up all night.

My diagnosis Micronoduler hepatic cirrhosis .

So I read that it's in advanced stage .

My blood last week at a/e was better than 2months ago but I feel ill more the last month tired crying itching stomach bloating got pain constant under ribs at top ,days of rash then goesonn off I'm so not sleeping I got ct next week I am iller than when I gave up 3 yrs nearly but I drank litre whisky or vodka a day I also have taken at least eight overdoses of medication yrs ago and I was on drugs 10yrs Speed .

I'm putting this all down on here !I'm ashamed as don't feel that I didn't say all the bad and when it's my fault and I keep asking but they seem dr ect to avoid the question of what do I do to live longer or am I panicking as I been told by ex partner that I make these illness up when i I really am ill I need to no if I read it write about what I have.

[badger4218]

Faithfull, if you contact the Hospital front desk , or look online you can get the number of PALS ( patient advise service)They are brilliant at acting as go betweens on your behalf with Doctors, nurses etc. Please try them as I have only heard good things about them helping people in situations such as yours. All the best. x

[Faithfull in reply to badger4218]

Thanks I'm in contact with them they are good I no what me diagnosis is but I don't no if I read it right about advanced liver stage all I am asking for is exactly how it stands and considering now I have co-morbiditys pals said I had to see the the specialist in January well that's crap as Iwait 2more months it's an eternity when I been getting iller.

[AyrshireK]

Hi again Faithfull, regardless of whether your condition is micro or macro nodular cirrhosis the important bit is the CIRRHOSIS. Cirrhosis in all cases is described as end stage or late stage liver disease as this is when the liver is damaged to such a degree that it will never completely repair. Cirrhosis can be 'lived with' it isn't necessarily a death sentence and people on here, other forums and even within my hubbies own hospital have had the diagnosis for 20+ years. Yes your previous lifestyle choices with drink and drugs and toxin overdoses have probably been the cause of you developing cirrhosis HOWEVER you can't turn back the clock and have to look forward. You have to learn how to LIVE with your diagnosis and get doctors to treat the symptoms.

If you've removed the booze and majority of drugs from your system (I know you need to take some for your other issues) then you've removed the damaging factors and your liver can recover a little.

However, the issues now are whether or not your liver is compensated or decompensated.

In compensated cirrhosis your liver can continue to cope and carry out some of its 500 different jobs although it will struggle with some and these might bring changes to your life (fatigue, temperature control, hormonal issues and more).

The danger to life comes when the liver becomes decompensated and this is where it can't cope with even it's most important of jobs like the removal of toxins from the body and you get toxin build up, blockages to bile ducts, jaundice, itching, portal hypertension with perhaps internal bleeds etc.

I know it must be scary to read about but if you have no one by your side you really do need to educate yourself about the condition and learn to recognise when things arn't going right. In some circumstances these might become a medical emergency requiring A&E treatment.

If you have a loved one who can accompany you to appointments that would be a huge advantage as two pairs of ears are better than one especially with the medical jargon. For now ignore the micro nodular cirrhosis diagnosis - just know that you have cirrhosis and get the advice for living with that.

The British Liver Trust page on Cirrhosis is brilliant at highlighting the symptoms and signs to look out for and they also have good pages on diet and looking after yourself. If you are in touch with the helpline perhaps get them to send you out paper copies of their leaflets as it might be easier for you to digest that way.

Lots of love and cyber hugs coming your way. Stay strong and hopefully after the CT scan doctors will properly explain what is going on.

Katie x

[Faithfull in reply to AyrshireK]

Bless your heart I read that again I got physiatrist assesssement again tomorrow I cannot put into words the impact of your reply took this grieving state of fear because in depth I did look at the link 20times but today it registered I even had pals on phone as they could only confirm diagnosis was right and I have the right to be told by dr but now I feel bit peaceful that I eventually read it right and needed that confirmation that I'm not inventing diagnosis up as now you gave me the help the shock of reading you new you understood and I think I been in denial as of all the mess of mind body beads to work together and thank you so much I'm so sorry that I been a nightmare and I do want you to no you have been my lifeline of hope today and I'm truly grateful. Oh there ain't no one and me daughter social issues I want to laugh because of the relief that you put it in nutshell.i got to stop repeating myself on here People do things in dispair .

[Faithfull in reply to AyrshireK]

Read it again you are true person who really really put down on here easy to understand as of me confusion thankyou there is so many things I needed to hear and I needed to put down what I done in life I did not want anyone helping blind to what I caused to myself but as you said Past is the past it's now to move forward deal with the shock that I ain't mad ,and I always have a delayed reaction to everything as of used to moving on to next event of grief I once was told by community worker I was one of the most resilient women they ever met they had to stop coming once a week as it was affecting the worker who came for yrs she was the only adult that I talked to .thanks again

[AyrshireK in reply to Faithfull]

Glad to have helped a little Faithfull. I spend my life trying to simplify med speak to support my hubbie with his liver disease, he doesn't take it all in so doctors direct all the conversation to me and following hubbies appointments he and I spend hours in discussions going over and over what was said until it sorts of sinks in a bit. He gets on with life and I deal with all the management of his condition, liaison with doctors, chemist etc.

I can't imagine how on earth anyone can manage this condition alone and without support and if you need to vent on here do so, you should only find support here and no judgement.

I do hope you get some answers quickly and some support with your situation.

More cyber hugs coming your way.

Katie xx

[Faithfull in reply to AyrshireK]

Waiting on mental health assessment found out patient liaison is in hospital for mental and physical to be my voice

[Faithfull in reply to AyrshireK]

Still waiting I do a post if any nhs help me please God.

How you got to say that I can't use this sometimes as nerves bad and I worry about you all but you all keep me going . and except me for me (the what's wrong with me repetitive posts confusing myself having forgot the link 10 times no understanding on me own posts )

But I try to have a laugh and give someone somewhere hope that we all together may give time to help when no one is ther

others as well as myself

[19581979]

Hi faithful

How did you and your daughter get on with the phone number I gave you? Are the support services linked to that number going to be able to help you?

How are things going with the mental health team and social services? What have they said can be done to help you.

We know you are really scared. No matter how scared you are please remember that eating small meals that have a small amount of protein, like fish or meat, eggs, beans and nuts are important. It is important to have a mixture of fresh or frozen vegetables and fruit. It is a good idea to eat a small amount of things like cereal (oats is a good one). As well as eating to help your body, it is important to drink water and a couple of cups of tea or coffee might also be nice to have. If you can also do a bit of exercise it will help. Even if you can't get out of a chair much there are some exercises that you can do while in a chair. It is important to have a rest as well.

If you can do all of those things you are helping your liver as best you can. If you and your daughter both do the things I've suggested you will be helping her as well. Helping each other will be good for you both.

None of us knows what the future holds we can only take it one day at a time.

Take care

Gx

[Faithfull in reply to 19581979]

Thank you

You and all keep me going helping me I had to be honest as the shock is still kicking in plus you no the ongoing fight but io ain't knocked out yet my life to much to unreal ,I feel like in in boxing ring fighting constant different things and as stumping as it seems I am doing that with me liver fighting the bad in body I sound like nut case but mind over matter but I have to do it my way in trying my everything my all as on mental health forum i always try if they are drinking to say don't become me .