Help

[vikingblade]

hi everyone. im new here, and i needed a bit of help. i have a neurological disease called cmt that causes muscle weakness and respiratory weakness. i have been on a bi-pap pro 2 for 5 years. recently, my respiratory problems have worsened, and i am getting a respironics bipap avaps on monday.

my concern right now, is i live in fl, and the summer season just started. we lose power here often in the summer. unfortunately, im now at the point where a night without power and my bipap, would probably mean respiratory failure and/or an ambulance trip to the hospital. so...i need to figure out a battery back-up system that will work for the avaps. i have read through alot of the battery back up posts here, but its all very confusing..so many options. my main problem is... i am totally disabled. im in a wheelchair, and i cant build or put together anything myself. my wife is my care giver and takes good care of me, but, this is beyond her ability. so...i need to find an already put together system, that is ready to go. something i just order online, that doesnt require much more than plugging it in if we lose power. the only system ive been able to find, is the respironics battery pack and dc power adapter at cpap.com. i believe this combo will work on the bipap avaps, but im not sure. it would be really expensive..like 465 bucks, and my medicare wont cover it, but, i cant risk losing power and having nothing. does anyone know if this would work, have experience with this system, or.. give me any other ideas that may be doable in my situation.. i appreciate any help with info. thank you

[Julie]

I would call one of the larger oxygen equipment providers and ask what they recommend. I imagine they'd be familiar with such things as you are probably one of many in similar situations. But I also think lots of people here will have some ideas.

[bdp522]

You could call cpap.com and ask what they recommend for your machine. I have always found them too be very helpful!

Brenda

[elena88]

Hi,
Im sorry to hear your respiratory problems have worsened due to CMT. I have two friends, who's son's also have CMT.

When we lose power here, most of our neighbors use portable generators. I dont know if you are in a free standing house,
but if you were, perhaps a neighbor could loan a generator to you as a back up for your bipap battery back ups.

[Janknitz]

Viking,

I think you are in a different category in terms of a backup battery or generator than the ordinary CPAP user. I think you should call your DME and ask if they have any experience with Medicare in your situation (there are some waivers and special programs for neuromuscular diseases), or if there might be a state program to cover your needs. The DME that supplies your oxygen will probably know.

You might also call your electricity providing utility company and see if they can help or refer you to someone who can. I'm certain they must have some programs to make sure that you have an uninterrupted electrical supply. Another reason to contact your utility provider is that you may be eligible for special discounts because of your reliance on electricity for medical equipment.

If all those routes fail, try charitable organizations--Rotary Club, the Muscular Distrophy Association or Multiple Sclerosis Society, etc.

[brazospearl]

Viking, honey,
I second the motion to call your electrical provider. When my area had massive power problems due to hurricanes, the crews worked to get power to homes where it was a medical necessity first. I also heard about the electrical providers helping folks like yourself set up a workable plan before a problem occurs. It'd be a good idea to get in touch with the local oxygen supplier...they can probably direct you, also. But none of those folks will help if you don't contact them, they have to know you need 'em. Good luck!

[vikingblade]

thanks for the suggestions. i contacted respironics and found out the proper adapter and battery pack that would work with the bipap. unfortunately, the system costs round 465 bucks online and even more at a local dme. ive contacted 2 dme's in my area...both said medicare will deny me coverage on a battery backup. even if medically necessary..imagine that. i dunno what alot of als folks do that need to be on bipap or vent all the time. guess they must buy it themselves or die... i live in a condo, so generator isnt an option..and im on the 2nd floor, so if power goes out, i cant leave bldg cause elevator will be out. so...ill prob need to contact power company as some here have suggested.. but dont think itll help if a transformer gets a lightening strike. ive seen it take over 10hrs to fix in the past. the mda etc... is a good idea.. maybe i can find funding. if not, there is always extended family, or begging door to door..hehe. you would think someone 100% disabled, living on social security, with severely weakend respiratory strength, would qualify for a simple $500 battery backup system that could save my life. guess not. lets hear it for medicare... sorry for ranting. its just so frustrating. thanks again

[brazospearl]

Vikingblade,
Keep putting the word out and I bet somebody can help you get hooked up. There might be local charity funding available, so you might try the local organizations like Red Cross, Rotary, Lions, etc. I'd approach them with the attitude of "could you tell me if you know anybody that can help me?' because SOMEBODY has a way to make this happen for you. Are you a veteran, by any chance? Ever belong to a union? Have you talked to your local social service agencies? Help is out there, just hang on!

[Rick B]

I had a similar problem with my DME and insurance just because I wanted something for going camping. I did find 2 different battery backups that will work. The respironics one you're talking about and one through battery geeks.net.

Now the drawback. Either one will only last about 2 nights and has to be recharged. The respironics pack has to be plugged into a wall to charge. HELLO! The power is out. Which plug do they recommend I use to recharge it??? The Battery geek one can also be charged by plugging into cigarette lighter in a car. That sounds a bit better. Both around the same price. $400+