Feeling Rough

[BSA-3]

I am compensated but I feel ill and exhausted virtually all the time. Is this part of it or is it just me? I also have severe COPD/emphysema which doesn't help, but I'm running out of fight. (I don't mean to sound pathetic but I'm fed up! )

[Millie09]

Hi there, I can understand how you feel .first off your not on your own. I am compensated cirrhosis 9 yrs but end stage and high fibroscan score. I also have mild hepatic encephalopathy of which has shown itself this morning on my grandaughter 5th birthday after buying her a beautiful jasper conran dress for an 8 yr old 🙄. I was so apologetic to my son but this is how forgetful I am .my son found it quite funny lol.

I get very tired very easily, but then my sleep pattern is all over the place. I have insomnia too. Due for endoscopy on 23 June. Tiredness is part of the illness but having copd on top of this has obviously had an effect. My dad had copd too.

Don't go giving up ! It is and can become a daily struggle more for some than others, I try to keep a positive outlook. No one can predict from one day to the next , not even our consultants . Do you have any support groups near to where you live?

I found out there was one at my hospital queen Elizabeth in Brum .so I am going to the next one even thought it's a fair distance from me . Keep your chin up 😊. Your not alone on this group .best wishes Linda

[BSA-3 in reply to Millie09]

Thank You Linda

[Millie09 in reply to BSA-3]

No need to thank me ! Here if you need to talk 😊

[carmik in reply to Millie09]

Hi Linda

I see you have liver problems and mentioned your father having had COPD.

Perhaps you should read my reply to BSA-3

[Millie09 in reply to carmik]

I have read your reply .yes my dad did have copd and pneumonia and cancer so I totally understand the situation and I understand about compensated liver

[freddie76 in reply to Millie09]

Hi

I get that you understand but do you know about the alpha 1 disease.

[Millie09 in reply to freddie76]

I was just being helpful to someone who was feeling down. I'm no medic.

[carmik in reply to Millie09]

I am sorry but I think you have misunderstood what I am trying to say. I am not trying to upset you but help you to understand that there is a specific cause for liver and lung problems. A specific disease that is inherited through out families. If others in the family are, or have been affected in this way then it is definitely worth getting yourself tested.

This test is not regularly carried out unless there is a trait through the family of these conditions.

If diagnosed other members of the family need to be aware especially if they have youngsters.

My husband was diagnosed at 56. By then his liver had nearly had it, and was eventually transplanted. Had we not been adamant that he didn't drink alcohol they would have just let it go, because he didn't test positive for any of the other liver diseases.

Hope you now understand what I was trying to get over to anybody with liver and lung problems , but with no specific diagnosis as to why.

Good Luck

[BSA-3 in reply to carmik]

Hi,my specific diagnosis is COPD /Emphysema, cirrhosis, (PH etc etc ), peripheral neuropathy and depression. I haven't got alpha 1antitrypsin,although there could be an element of hereditary illness as both my mother and herfather died young of COPD. My liver disease is purely through years of alcohol abuse. Hope this helps

[carmik in reply to BSA-3]

Fine I was just trying to help as lots of people get told they have an issue but don't follow it through. Obviously you have and am sorry for all your problems and hope you can work your way through them.

Good Luck

[BSA-3 in reply to carmik]

Thanks Carmik

[Mushroom-71 in reply to carmik]

Hi there I have this disease it's alpha 1 antitrypsin deficiency. I'm on the transplant list for liver and lung. x

[carmik in reply to Mushroom-71]

Hi

Not often an Alpha appears on this site.

How long have you been waiting and what hospital are you under.

Do you know about the Yahoo Group for Alphas.

[Mushroom-71 in reply to carmik]

Hi was diagnoised 1999 because my sister was ill then all siblings were tested. 4 out of the 8 had it, one sibling had double lung 2001 one died 2002 then I carried on with life and 3 years ago. Became ill with stomach pains hadn't drank for 3/4 years then they told me I had cirrhosis couldn't believe it was put on transplant list this year because liver is so bad but lungs wouldn't cope as only 28 % lung function so was advised needed both as I've been given less than two years to live. I'm aware of groups but this is the only one I go on haven't got fb or anything. Thanks for replying x

[Mushroom-71 in reply to carmik]

Under qe bham

[BSA-3 in reply to Mushroom-71]

Hi Mushroom 71.I'm really sorry about your situation. All I can do is hope that everything turns out for the best, sincerely.

[Mushroom-71 in reply to BSA-3]

Aww thank you.

[BSA-3 in reply to freddie76]

Hi,I was tested for it when diagnosed COPD, not affected thankfully

[carmik in reply to BSA-3]

Hi again

So do they say what happened to your liver. Do you have a diagnosis for any specific liver disease

[carmik]

Hi

When you say compensated are you talking about your liver?.

If so ,I see you also have lung problems. What is your diagnosis for having both these conditions.

Would be interested to hear your answer before I go any further.

[BSA-3 in reply to carmik]

I had liver failure last year and decompensated with all the associated symptoms. Touch and go for a while, 2 months in hospital but pulled through.I was first admitted with severe COPD exacerbation (pneumonia )then the s..t hit the fan, so to speak. I've been at home a year but honestly, I feel pretty awful. My lungs aren't good but I don't like involving my doctor, and certainly not the hospital.

[Millie09 in reply to BSA-3]

Sorry to hear this , why don't you like to involve your doctor or hospital? Have you had a bad experience at all ? I have had a few in my time and with dentists but I think you should see someone 😐

[BSA-3 in reply to Millie09]

I have absolutely no problem with GP or cons.,they're both brilliant, not so hospital. GP was here other day.

[BSA-3]

I would if I knew how to use this sodding machine properly! ! !

[Millie09 in reply to BSA-3]

Lol! If you need to chat private then go in to the profile face and press follow, you can then message.

[BSA-3 in reply to Millie09]

I will, ta

[Hidden]

Hi

I hope you start to feel better soon, everyone on this forum are great. Please take care. Lots of love Lynne xxxx

[BSA-3]

Thanks Lynne and thanks to all.It really does help to "talk "

[Hidden]

Hi

I hope you all start to feel better soon. Lots of love Lynne xxxx