What next?

[Vickie55]

  My sister was recently diagnosed with autoimmune hepatitis with stage 4 cirrhosis.  She has no insurance- has worked all her life, but husband's job has no insurance.  She has been having repeated episodes of confusion and muscle weakness from high ammonia levels. I took care of her today and she can barely walk.  She is under no treatment for autoimmune disease.  She does take lactulose when she feels she is beginning to get confused.  
We want the truth.  Is the no treatment because of no money or because of the late stage of her liver disease.  She is having to go every 3 months for a Medicaid spin down? and it takes about 3 months to be approved so if we bring her to a doctor and they check for Medicaid it may not in effect at that time.  We took her to a specialist at Oschner Hospital in New Orleans and they turned her away at the door because when they called Medicaid they said her case was pending (We did try Earl K. Long in Baton Rouge, but they were not able to find out what was wrong with her).  Please let me know what we should do next.  I feel we are in a mountain of paper work and before it is complete she will be dead.  

[HectorSF]

I hope someone who knows about Medicaid will chime in here.

Of course you don't have hundreds of thousands of dollars for a transplant. Let the state pay for the transplant or the feds. She is only 53. Younger than me. What do we pay are taxes for?

Just don't give up hope there is help out there.

"the specialist won't see her" because Medicaid is pending. This is "the run around". So if the specialist's wife sister were dying he would help her either? This people are cold hearted.

Does she still have connections with the doctor she worked for? Maybe they can get someone to see her.
I wonder why the doctor she worked for 18 years didn't try to stop her from progressiving to cirrhosis. And then when she got cirrhosis start refering her to a transplant center?  

She needs to be seen by someone soon! Some one who is going to help her not standby and watch her get sicker and sicker!

"gastroenterologist - we called her today and she said we could do the same thing at home that they do at the hospital??"
What is that exactly? What do they say if going to happen? So in their opinion they are fine with her going to the hospital more and more as she gets sicker...and then what. Unless I am missing something this is another run around. Is there anybody who is going to take responsibility here?
Truly sad.

No one has mentioned transplant. Have they told you what the outcome of End Stage Liver Disease is if she doesn't get a transplant?

I am so sorry your going through this.
Keep posting and try the Liver Failure forum. Maybe somethere can help.
Hector

[Vickie55]

Yes, we have never had to worry about no insurance before and things beyond their control took their coverage away.  She is only 53 years old = she has been to the emergency room 3 times with the same symtoms - she worked for a doctor for 18 years so she was well treated and that is where they found out she has autoimmune hepatitis.  They did approve her Medicaid for 3 months but it is pending now so the specialist won't see her.  She has been to a gastroenterologist - we called her today and she said we could do the same thing at home that they do at the hospital??  No one has said anything about a transplant.  I hope it is not  because she has no money now.  I hate to think that she would die because she is either not poor enough or rich enough.
All of us will help her, but none of us have the kind of money that would pay for a liver transplant.

[Mary4now]

I am so sorry to hear of your circumstance... I can only wish that this country would provide health care for everyone.  If you have to pay a hepatologist out of pocket probably $500 you could get some better answers.....
I do know of someone who had to wait till she was so sick that she ended up in the emergency room, she did get her medicaid approved at that point and now she is on a wait list for the transplant.  
Just keep at it.. I am so sorry you have to go through this.... M4now

[HectorSF]

Hi Vickie. Thanks for your questions. I am very sorry to hear about your sister. It sounds like a terrible situation. I hope I can be helpful in some small way.

...First let me start off saying I don't know enough about autoimmune hepatitis itself to tell you what you should do. I will only comment on things I have personal knowledge of mostly due to my knowledge and experiences of living with cirrhosis, which I have.

Most importantly...

YOU NEED TO HAVE YOUR SISTER SEEN BY A HEPATOLOGIST preferably at a Liver Transplant Center. Without proper medical attention she will only suffer more over time and she will have no opportunity to stabilize her condition. The sooner she gets seen the better her future prospects.

Do I understand correctly neither her nor her husband has insurance?
Maybe some others on this forum are familiar with what Medicaid will pay for.
What treatment has been giving to her so far. I see she is taking lactulose so she must have seen a doctor at some point. What did/does the doctor say?
How old is your sister? How long has she been ill?

From what you write it appears she is experiencing the effects of decompensated cirrhosis (hepatic encephalopathy=ammonia being one symptom of cirrhosis), which means she will probably need a liver transplant. She needs to see a doctor soon. She needs guidance in managing her disease and possibly getting on the transplant list which she will need a doctor to help her do.

The truth is there is treatment for autoimmune hepatitis. And there is treatment for decompensated cirrhosis. A liver transplant. Which is a major life event that needs to be managed with the help of a Transplant Center hopefully in your area.

You may want to look over at the "Liver Failure Support Group" as they deal more with advanced liver disease and transplant issues. They can probably assist also with Medicaid and finding a transplant center near you. I would suggest asking the moderator IMKINDLY these same questions. She or someone else there can probably help you. They are at the following web address...

http://forums.delphiforums.com/liverfailure/messages?msg=3747.1

Also here is a good site with a lot of information about autoimmune hepatitis.
http://janis7hepc.com/autoimmune_hepatitis.htm#7

Best of luck to you.
I wish you and your sister all the best. I do hope she gets some much needed medical help to ease her suffering.

Hector