LizF
Active member
- Joined
- Jun 16, 2016
- Messages
- 64
- Reason
- PALS
- Diagnosis
- 06/2016
- Country
- CA
- State
- BC
- City
- Victoria
I'll keep this brief for those with reading challenges, feel free to ask questions in the comments if you like.
I went into hospital on Dec 18 for a simple PEG placement.
The doctor aborted the procedure as the light was not showing through my stomach, giving him a safe "landing site".
Agreed with my respirologist (my PCP) that as I was already admitted to hospital that we would do a RIG next day.
This was incredibly painful but seemed to go well and I was discharged on Xmas Eve.
Within a few hours, I was so much pain I was rushed back to ER, so much pain I couldn't form words, only wail. The anchor for the tube had let loose.
Surgery to double anchor the tube followed. By the 26th, I was still in some pain and Dr. L (my PCP) pushed for surgery.
This time, the surgeon (a stomach specialist) went in to discover I was riddled with serious infection. He pulled out the tube completely.
I got home yesterday after what was the most hellish, miserable experience in my life. Pain went, stomach healed quickly, but I began aspirating (very strong swallow and talking, this is new) leading to panic attacks etc.
Right now, I am comfortable, had a lot of good people looking after me and advocating for ALS rights. I didn't need the tube right now so that's for later.
Wanted to share my unusual experience-knowledge is power.
xo
I went into hospital on Dec 18 for a simple PEG placement.
The doctor aborted the procedure as the light was not showing through my stomach, giving him a safe "landing site".
Agreed with my respirologist (my PCP) that as I was already admitted to hospital that we would do a RIG next day.
This was incredibly painful but seemed to go well and I was discharged on Xmas Eve.
Within a few hours, I was so much pain I was rushed back to ER, so much pain I couldn't form words, only wail. The anchor for the tube had let loose.
Surgery to double anchor the tube followed. By the 26th, I was still in some pain and Dr. L (my PCP) pushed for surgery.
This time, the surgeon (a stomach specialist) went in to discover I was riddled with serious infection. He pulled out the tube completely.
I got home yesterday after what was the most hellish, miserable experience in my life. Pain went, stomach healed quickly, but I began aspirating (very strong swallow and talking, this is new) leading to panic attacks etc.
Right now, I am comfortable, had a lot of good people looking after me and advocating for ALS rights. I didn't need the tube right now so that's for later.
Wanted to share my unusual experience-knowledge is power.
xo