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Active member
May 22, 2007
Sept. 06
I am probably going to have to vent soon and would like to know what we are in for. No question in my mind or my families that I will vent and want to stay home, any advice would be appreciated,
Hello Cheryl. I am sorry that things have progressed to this point. I like your spunk! By deciding to take charge and do your research you keep the upper hand with this disease. I am sure some of our long time PALS and CALS will offer much advice soon. Meanwhile, I saw on another thread some great tips. try using the search feature at the top of this screen. Cordially, Cindy
Brentt recently posted on his experience getting a vent - gave lots of practical info. You might be able to find it by scanning recent threads or using the Search option above.

Hello Cheryl, I have been on a home vent for about 3 months now.
First you will need to find a rehab facility that will train your caregivers in vent care procedures. More then likely the hospital that does your tracheostomy will help you locate a rehab facility. There may be more then one around your areay,so you should get as much information as possible on each facility such as their reputation and their care level. This is so family or others that will be providing care for you will know and understand how to maintain your ventilator and your needs. Once they have been trained and checked out the facility can release you to your home.
Second, your home will need to have some modifications prior to their relaese. Usually the vent provider will do an inspection of your home. The shower will need to be modified for a shower chair. A lift will be required. Also the entrance to the home will need to be wheelchair accessable.
Be prepared with plenty of caregivers. Don't rely on your family completely unless there are at least 4 to share the load. The caregivers will be the most important part of your survival. You don't need to hire a Home Health Care agency as they cost a large fortune. And yes I mean like $250,000. for a couple of months. Unless your are bloodywell rich or you are very well insured, forget HHC. Place an add in your local paper and place adds at community and other schools in your area.
While you are recovering from the procedure you will learn the types of questions to ask the persons you will be interviewing.
Let me tell you that the home vent is very reasonable if you have a family that cares. We have been doing it with 2 persons for this period. We have been through a couple of helpers as they didn't have the experience they claimed or they just couldnt retain what they were taught. This might be the hardest part of all is to find extra help that you can count on.
If a clean environment is maintained and the caregivers all take the proper steps to keep their hands cleaned and gloved while working on you, then you can survive a very long time.
thank you

thanks to everyone that replied to me. thank you Brent for the information. I have learned from hanging around this site that a lot of great people have ALS or are CALS.
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