Jeanau
Distinguished member
- Joined
- Jan 21, 2015
- Messages
- 341
- Reason
- PALS
- Diagnosis
- 12/2014
- Country
- US
- State
- PA
- City
- Pittsburgh
I had my PEG inserted on Thursday morning and came home from the hospital the next day. That 30 hour stay taught me some important things and made me really wonder about and rethink my approach to my ALS.
First of all, no ALS patient should ever be in a hospital alone. We're simply too vulnerable. Though the staff was extremely kind (except for one respiratory therapist) they didn't have any understanding about my limitations and ALS in general!
I went in to get the PEG done now because my breathing is deteriorating rapidly. But, I'm still eating regular food (with some modifications). Immediately they wanted to arrange my 4 feedings a day. They ordered the kits to be delivered and then told me how much each feeding would be etc. etc. etc. Three times I tried to and my sister and caretaker explained my situation. I was getting the PEG for later use. We were getting nowhere. Finally, I did a time out motion with my hand and stopped everyone from talking. With my raspy,weak voice I reminded everyone that I was the patient and when I used the feeding tube was MY decision. I think I surprised them, but they agreed.
When I was laying in bed later and unable to get comfortable I had some disconcerting thoughts. Like a flash it hit me. Why was I doing things to prolong a life that I wasn't sure was worth living? I know many people on this forum won't agree with me about this, and I respect that fact. But when I need to be carried to and from the bathroom, in and out of bed, can't talk or eat, and can't breathe without machinery do I even want to live?
I'm a Christian and I've tried hard to live a good life but I'm struggling with this fundamental question. Is is ok for me to decide when I want to say "enough" and leave this earth for whatever is next? 30 hours in the hospital changed my life and I have a lot to think about.
As far as the surgery it went smoothly. I'm left with soreness and bruising, but not unmanageable pain. Thanks for your encouragement and support.
Audrey
First of all, no ALS patient should ever be in a hospital alone. We're simply too vulnerable. Though the staff was extremely kind (except for one respiratory therapist) they didn't have any understanding about my limitations and ALS in general!
I went in to get the PEG done now because my breathing is deteriorating rapidly. But, I'm still eating regular food (with some modifications). Immediately they wanted to arrange my 4 feedings a day. They ordered the kits to be delivered and then told me how much each feeding would be etc. etc. etc. Three times I tried to and my sister and caretaker explained my situation. I was getting the PEG for later use. We were getting nowhere. Finally, I did a time out motion with my hand and stopped everyone from talking. With my raspy,weak voice I reminded everyone that I was the patient and when I used the feeding tube was MY decision. I think I surprised them, but they agreed.
When I was laying in bed later and unable to get comfortable I had some disconcerting thoughts. Like a flash it hit me. Why was I doing things to prolong a life that I wasn't sure was worth living? I know many people on this forum won't agree with me about this, and I respect that fact. But when I need to be carried to and from the bathroom, in and out of bed, can't talk or eat, and can't breathe without machinery do I even want to live?
I'm a Christian and I've tried hard to live a good life but I'm struggling with this fundamental question. Is is ok for me to decide when I want to say "enough" and leave this earth for whatever is next? 30 hours in the hospital changed my life and I have a lot to think about.
As far as the surgery it went smoothly. I'm left with soreness and bruising, but not unmanageable pain. Thanks for your encouragement and support.
Audrey