cirrhosis lack of knowledge in Hi This is Kat!

  • May 30, 2024, 1:39 p.m.
  • |
  • Public

I wish I had a meld score or a child-pugh score on Jo so I could better understand just how far along she is. BUT she has never ever went to a specialize doctor for cirrhosis! Guessing they tried to get her to go years ago but she refused?
Her last doctor refused to treat her for non compliance and missed appts. I got her in with my doctor about 5 or 6 years ago.
She was throwing up blood about 4 years ago so they did an upper GI and I guess that was the first time I had heard she had cirrhosis and guessing because this was a symptom of decompensated cirrhosis she was in that stage???
Each time she was in the ER and then moved into a ICU room I also learned more and actually got some numbers
As far as I know Jo have known she had cirrhosis for about 6 or 7 years but NEVER got educated or learned how fast it can kill you or maybe she opted to just not know that part via denial???
Oddly no doctor at the hospital ever sat down and gave her the facts… but I am sure they could have when I was not around and probably did.
Our doctor did tell me last oct or nov that by Jo’s numbers he gives her less than 6 months! BUT Obviously he was wrong because Jo has beaten those odds… thinking it has been 7 months but..... Jo is now worse than she has been. She avoids me so I cannot judge how bad she is. She refuses to go to the doctor so I am left to google her symptoms.

Cirrhosis is such a sad horrible disease! She has ascites where she looks pregnant now, she lost almost all her muscle and is down to about 90 to 100 pounds before the ascites, her eyes are yellow, she has light colored poop, she is shaky, and tired.... I think it looks bad! I have read that jaundice itself is not dangerous it just lets you know you have liver issues so that is good.

yes, I know, I worry way to much but she is my very best friend


Jodie May 30, 2024

Why don't you ask a specialist all these questions? I am sure they will talk to them seeings your he advacate and responsible for some of her life? But for something like this I would be asking experts..google is always not what you are looking for.

theKat Jodie ⋅ May 30, 2024

because they are not going to talk about anyone that is not under their care. and she does not go to any specialist

Jodie theKat ⋅ May 30, 2024

What I would do is phone a specialist and tell them you have a friend who you are worried about and ask them if they can answer your questions. What is the worst they can say? NO?

theKat Jodie ⋅ May 30, 2024

no medical provider in the usa can give out any medical info over the phone if you are not under their care

Jodie theKat ⋅ May 30, 2024

I would be asking if I can make an appointment to talk to them....and I would also google doctors and ask them questions on line or via e-mail.

theKat Jodie ⋅ May 30, 2024

you simply cannot do that

Jodie theKat ⋅ May 30, 2024

Why not? You can try and the worst they will say is no? but if you take goggles word and there is no tripple checking then you really don't know?

You must be logged in to comment. Please sign in or join Prosebox to leave a comment.