Samkl
Distinguished member
- Joined
- Nov 1, 2019
- Messages
- 143
- Reason
- Lost a loved one
- Diagnosis
- 08/2019
- Country
- AU
- State
- NS
- City
- Wollongong
I didn't want to hitch on to Kristina's thread, but this is a similar inquiry. My PALS relative would like to go down the trach/vent route, but is not being encouraged by his clinical team or partner. He is respiratory onset. From Kristina's thread, can I gather that you can go through a venting/traching procedure, which will give the option of hooking up to mechanical ventilation when needed (later in disease progression or at night), cap it when not in use and use the Bipap during the day? The Bipap is meeting his needs at the moment. He is seeing the respirologist to adjust his settings prescription, due to increased CO2 in his blood gas readings, although he is comfortable on the current settings. I don't think they would see many respiratory onset ALS patients, so I wonder if that is impacting everyone's discouragement.
I think constantly of you all in the US, and hope things are better for you than are reported in our media.
I think constantly of you all in the US, and hope things are better for you than are reported in our media.
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