caroliney
Active member
- Joined
- Apr 27, 2007
- Messages
- 84
- Reason
- Loved one DX
- Country
- US
- State
- South Carolina
- City
- Goose Creek
Hello Everyone,
Just to let you know I lost my husband to ALS this past Sunday at 8:40 P.M. Never have heard of a muscous plug blockage by anyone until the time of his death.
He did tell everyone he was having trouble breathing after his trach operation, in the hospital, and when he came home. This I am told is very common in ventilator patients to have this problem. Just wanted to share with everyone that this costs my husbands life due to no oxygen to his body; the muscous plug.
He was suctioned properly, in fact, I was told he was suchioned too much by me after he came home, by the home health nurse. I am saddened that no one mentioned to our family anything about the muscous plug blockage, until after the death of my husband. Our family realizes the ALS was present, but after 23 months of diagnosis, it feels that we were cheated a few years, had we known about this muscous plug. Just do not understand the medical field not informing patients more about risks in detail when a loved one is trying to prolong their life.
So little is being done for an ALS cure. We as a nation seem not to know anymore than we did when the first ALS patient died years ago. How many more lives are going to be taken before we find a cure.
My husband fought this horrible disease to the end, but the ALS thief won despite his strong will to live with his family.
I pray for a cure for this ALS. God Bless each of you for your strength and wisdom. I truly believe we sometimes do know more about this disease than our fellow doctors.
Love and Best Wishes,
Carolney
Just to let you know I lost my husband to ALS this past Sunday at 8:40 P.M. Never have heard of a muscous plug blockage by anyone until the time of his death.
He did tell everyone he was having trouble breathing after his trach operation, in the hospital, and when he came home. This I am told is very common in ventilator patients to have this problem. Just wanted to share with everyone that this costs my husbands life due to no oxygen to his body; the muscous plug.
He was suctioned properly, in fact, I was told he was suchioned too much by me after he came home, by the home health nurse. I am saddened that no one mentioned to our family anything about the muscous plug blockage, until after the death of my husband. Our family realizes the ALS was present, but after 23 months of diagnosis, it feels that we were cheated a few years, had we known about this muscous plug. Just do not understand the medical field not informing patients more about risks in detail when a loved one is trying to prolong their life.
So little is being done for an ALS cure. We as a nation seem not to know anymore than we did when the first ALS patient died years ago. How many more lives are going to be taken before we find a cure.
My husband fought this horrible disease to the end, but the ALS thief won despite his strong will to live with his family.
I pray for a cure for this ALS. God Bless each of you for your strength and wisdom. I truly believe we sometimes do know more about this disease than our fellow doctors.
Love and Best Wishes,
Carolney