shiningsmile
New member
- Joined
- Aug 20, 2008
- Messages
- 2
- Reason
- CALS
- Country
- US
- State
- Indiana
- City
- Liberty
I am new to this forum. I stumbled across it while doing some research for a dear friend who was diagnosed roughly two years ago with ALS. Her ALS started in her legs and then to her arms and now has taken her whole body. She had her last doctors appointment about 4.5 months ago and at that time she had a 16 on her FAV test.
She recently had a feeding tube placed and expierenced a lot of complications. She ended up in the hospital. her body is not absorbing the food thats being placed in her stomach through the tube. She was severly dehydrated when she entered the hospital but has recovered some water weight through the IV. The doctor decided to keep her until the feeding tube issue was resolved. He thinks that the ALS has effected her muscles involved in digestion and elimination.
All this history leads me to the questions I have. At this point she would like to go home and forget about trying to figure out the feeding tube. She would like to just take water and some pedialyte, and her meds through her tube and try the best she can to eat. She can't swallow very well at all anymore and getting the simplest thing down is a chore. All of us, her family, caregivers, and many many friends are wondering what to expect next. If she goes home and can't consume much food but can get some nutrition and fluids through her tube what kind of quality of life is she going to have? How long can one survive in her state? Doctors won't really say.
I am hoping maybe someone out there is can lend some advice and support, possibly someone who has had to go through this terrible disease with a loved one and can share their expierence. Thank you all in advance.
She recently had a feeding tube placed and expierenced a lot of complications. She ended up in the hospital. her body is not absorbing the food thats being placed in her stomach through the tube. She was severly dehydrated when she entered the hospital but has recovered some water weight through the IV. The doctor decided to keep her until the feeding tube issue was resolved. He thinks that the ALS has effected her muscles involved in digestion and elimination.
All this history leads me to the questions I have. At this point she would like to go home and forget about trying to figure out the feeding tube. She would like to just take water and some pedialyte, and her meds through her tube and try the best she can to eat. She can't swallow very well at all anymore and getting the simplest thing down is a chore. All of us, her family, caregivers, and many many friends are wondering what to expect next. If she goes home and can't consume much food but can get some nutrition and fluids through her tube what kind of quality of life is she going to have? How long can one survive in her state? Doctors won't really say.
I am hoping maybe someone out there is can lend some advice and support, possibly someone who has had to go through this terrible disease with a loved one and can share their expierence. Thank you all in advance.