Mom is back in coma

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lost on Maui
New Member

Date Joined Jan 2009
Total Posts : 1
   Posted 1/8/2009 6:37 PM (GMT -7)   
I have been reading a lot of the posts on this site and have found so much helpful information that I wish I had found sooner. My Mom has Hep.C and so far I've been told advanced liver disease. She has been in and out of the hospital about 5 times now due to the brain fog. This last stay she was admitted after being found unresponsive by firemen who had to enter her apt. because the toilet had flooded it and the landlord couldn't get in touch with any of us. This was the worst time when my brother and I got to the E.R. she could open her eyes sometimes but they would roll back in her head and she couldn,t talk or move. It was the scariest thing ever. The worst thing is that every time she is admitted we start from scratch, it is always a different Dr. and they never seem to get a history for her until maybe hours or weeks later. This time she was in the hospital for the entire month of Dec. She now has been moved to a nursing home where they are supposed to be able to help take better care of her, with the lactulose, diet, and rehab, etc. It isn't going so well. I spent the last two days trying to figure out if she was taking the lactulose and if she was why she was so tired and not really talking to me. The nurse told me they would order the ammonia blood work yesterday and then asked me if this is how she normally is! My brother and I have figured out that we are back to square 1. They don't know how to take care of her at all and have little to no directions about her condition! It is so frustrating! Because we live on a small island in Hawaii I think we are in real trouble, our medical system is even more screwed up. I feel completely helpless and like my brother and I have had to force the Dr.'s to treat her since we seem to know what to do better than they do. This morning when I got to my Mom she wasn't even opening her eyes, the nurses said yea they hadn't been able to get her to wake up either. They are completely clueless about her coma situation. After we finally got the Dr. to call us he suggested that they would begin giving her the enemas at the nursing home and then check her ammonia levels tomorrow, because that is all they would do for her at the hospital and that after she is in the hospital for 3 days she loses her bed at the nursing home. I am soo scared again and so frustrated all I can do is keep praying to god to help all of us. No one will really tell us what is happening, I know she won't be eligible for a transplant but if she is dying we just want to be able to help make her more comfortable and in less pain.
Sorry my posting is so long but I am really lost and confused and we are dealing with minimal support here. I am only 27 and my brother is 26 and we are the only people around to deal with this. Plus we are both in such transitional places in our lives which has only added to the stress.
So any helpful information anyone has is so appreciated and if nothing else please pray for my Mom.
Everything I have read from posts in the past has been so helpful, thank you and god bless all who are struggling with this, loving someone through it, or have lost someone you love.
Aloha from Maui

Veteran Member

Date Joined Oct 2007
Total Posts : 954
   Posted 1/8/2009 7:29 PM (GMT -7)   
Welcome to the forum Lost on Maui. Since you have read some of the older posts, I guess you have figured out that this disease is very unpredictable. I am so sorry that your family is dealing with it. Does your mother have a hepatologist? Primary care doctors are not usually equipped to deal with this disease. Encephalopathy can be really scary. I will be praying for your mother. Hopefully tomorrow she will be awake and aware.

Hang in there. This disease is one big battle.

There is always hope!

Elite Member

Date Joined Jul 2005
Total Posts : 12014
   Posted 1/8/2009 9:39 PM (GMT -7)   

Hi, Lost.  I also wanted to welcome you to the forum.  I am sorry your mother is suffering from this disease.  I would try to find out if she sees a hepatologist when she is in the hospital.  Did she have one who followed her prior to her hospitalizations and NH placement?  She undoubtedly doesn't see one at the NH.  Other docs, particularly general practice physicians, are not at all equipped to deal with liver disease.  You mentioned pain.  Is your mom having abdominal pain?  I hope they will give her the Lactulose as needed, as that should help with the encephalopathy.

I'm not sure how much help we can be to you, but we certainly can offer information and support, and a place to just "vent."

My prayers are with you, your mom, and your brother.

Forum moderator - Hepatitis

Pink Grandma
Veteran Member

Date Joined Nov 2006
Total Posts : 2445
   Posted 1/10/2009 4:31 PM (GMT -7)   

Hello Lost in Maui and a big welcome to HealingWell.  That's what we are here for: to give/get support and pass along any knowledge that we have concerning liver disease.  So glad that you found us.

Since you and your brother seems to know more about this disease and it's treatments then the doctors or nursing not be afraid to speak up when necessary.  Roar if needed.  It's your mom's right to have the best possible healthcare.   I agree with Connie and Butterfly, please try and get a Hepatologist involved if possible. 

Thoughts and prayers....  

Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

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