joelc
Moderator emeritus
- Joined
- Jul 15, 2006
- Messages
- 2,835
- Reason
- PALS
- Diagnosis
- 09/2005
- Country
- CA
- State
- BC
- City
- Abbotsford
jackiemax
My heart goes out to you! I just spent all of last week in Vancouver meeting with the staff at the ALS Clinic as well as the respiratory specialist at the Vancouver Hospital. My breathing went from 100% to 30% in less than 4 months which totally put our lives upside down. I think I can relate, a bit, to what you are currently going through and the decisions you are faced with.
You said "nothing was said about 'venting'. he has been on a bipap for several months now, and she suggests he use it more often during the day."
I have also been on a bipap for several months and am starting to have to use it more during the day as well as all night. Quite a change to get used to, but we are determined to live in spite of ALS. Another similarity in our experiences is the fact we were not offered the choice of venting either, after a bit of research we discovered they still do them so with this new found information we asked about it and were told they will not do this and I would just have to live, or die, with a bipap. After pressing the issue further they finally agreed we could get it done but I would be institutionalized if I did and would not be able to come back home.
More research revealed this is also not true so we really lamented over what to do.
Finally decided to vent when needed so headed to Vancouver to talk to the experts about this - we found lots of good support there and they were really upset with what information we had been given locally. Since there is ZERO support locally we are in the process of moving to where there is. Our house is going up for sale either this week or next.
Have you made the decision to NOT vent? If you would like to converse privately on this - please let me know as I would be happy to share our decision process with anyone who wants to know.
God Bless!
My heart goes out to you! I just spent all of last week in Vancouver meeting with the staff at the ALS Clinic as well as the respiratory specialist at the Vancouver Hospital. My breathing went from 100% to 30% in less than 4 months which totally put our lives upside down. I think I can relate, a bit, to what you are currently going through and the decisions you are faced with.
You said "nothing was said about 'venting'. he has been on a bipap for several months now, and she suggests he use it more often during the day."
I have also been on a bipap for several months and am starting to have to use it more during the day as well as all night. Quite a change to get used to, but we are determined to live in spite of ALS. Another similarity in our experiences is the fact we were not offered the choice of venting either, after a bit of research we discovered they still do them so with this new found information we asked about it and were told they will not do this and I would just have to live, or die, with a bipap. After pressing the issue further they finally agreed we could get it done but I would be institutionalized if I did and would not be able to come back home.
More research revealed this is also not true so we really lamented over what to do.
Finally decided to vent when needed so headed to Vancouver to talk to the experts about this - we found lots of good support there and they were really upset with what information we had been given locally. Since there is ZERO support locally we are in the process of moving to where there is. Our house is going up for sale either this week or next.
Have you made the decision to NOT vent? If you would like to converse privately on this - please let me know as I would be happy to share our decision process with anyone who wants to know.
God Bless!
