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Oct 11, 2006
Friend was DX
Hi, this is my first post in a forum of this kind. My best friend, 51, has ALS. He was Dx'd in August and has gone downhill very rapidly since then. Even though his only real disabilities right now are his speech, which is very slow and extremely slurred, and some difficulty with swallowing and chewing, his respiratory capacity is already down below 40%. He will be getting a PEG placed on Tuesday, mostly because of his respiratory status, but I'm wondering about the question of a vent. He once was very enthusiastic about one, but lately has not mentioned it. I know a lot of PALS do not choose to get one, especially if they are in the late stages of the illness. But J. is still walking and driving and talking, if poorly, and doing everything he used to, except breathing well. If he continues to progress rapidly, I don't know how long he will last at this rate. He has some money in a trust fund, though he has been on disability for many years for other reasons, and so mostly depends on Medicare. Does Medicare pay for a vent? And if so, does one have to have 24-hour care afterwards? J. is single and has no family. How much does someone need to know to take care of a person on a vent? Does anyone know the answers to these questions? Where could I find them? Thanks a milliion to anyone who answers this...
Hi Pam. Welcome to the site and I hope we can help. I had 2 sites with vent information and they are both offline presently.I'm not sure if Medicare pays for a vent but I would think someone down there covers it. ALSA or MDA should be able to advise you on that. Once a person is vented they do need a caregiver but I'm not sure if it is 24/7. A friend or live in caregiver can be trained in how to maintain the vent in a short time. If you go to the search feature above and type in trach or vent there is some information posted from some people that know more than I do.
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