pamwagg
Member
- Joined
- Oct 11, 2006
- Messages
- 28
- Reason
- Friend was DX
- Country
- US
- State
- CT
- City
- Wethersfield
My friend Joe wants a vent; he wants to live. I know that. The trouble is that he cannot speak or eat any longer, though he uses a feeding tube and a laptop speaking device and is otherwise still ambulatory. However, I have gone into his apartment to add Jevity to his tube-feeding apparatus at night and found the bipap alarm sounding and sounding, not turning off as it should when he takes a breath. He tells me this is because his inhalations are not strong enough to trigger the machine to switch the alarm off. I worry that in fact he is not taking a breath at all for several minutes, but that the bipap is essentially breathing for him. We both have schizophrenia and have never been able to travel so we were planning to go to Disney World in May. Today my doctor told me that this problem, of the bipap alarm not turning off, signifies that Joe could die in his sleep at any time. She worries that he won't make it through May. But the out-of-state ALS Clinic he attends has not even mentioned this to Joe nor once brought up the issue of a ventilator. I don't think they even know his wishes in the matter. It's like they are simply waiting for him to die, so they won't have to deal with it. Is he in danger of dying? (His FVC is under 40% and without the bipap his nighttime O2 saturation drops to 60% at tiimes) Should I or someone tell him? What are the steps necessary towards getting a vent? We live in Connecticut and he is on Medicare but not Medicaid. He does have some money. I'd appreciate help in this if anyone knows what to do. Thanks.
Pam W
I read the recent thread on vents and it was very helpful but it couldn't answer these particular questions.
Pam W
I read the recent thread on vents and it was very helpful but it couldn't answer these particular questions.