Cystic Fibrosis patient needs an inexpensive respirator generator

My daughter with cystic fibrosis, uses a "bio vest system" that includes the vest with hoses that attach to a generator which weighs about 50 lbs. Hillrom makes a 17 lb vest system (www.thevest.com) but it costs $16,000.00. I don't understand why it has to cost so much. We can't afford the 17 lb version. My daughter who has just graduated from college and wants to travel in her career is faced with not taking her vest along with her for weeks at a time because she can't handle carrying the heavier version on and off planes, trains, etc. This leaves her without getting her breathing treatments. Is there a solution to this problem? Can the bio-vest be made any cheaper so that everyone can have the 17 lb version??

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Kiteman9 years ago
I'd never heard of those vests - they seem to be a very good idea.

Regarding operation, the site says "A typical treatment takes 15-20 minutes". Does the patient walk around as normal during this time, or does she sit in one place?

I ask because a potential DIY version would be easier to produce if it was acceptable to restrict the patient's mobility for those minutes by utilising an external power-supply (putting pumps on a trolley would make the worn section a whole lot lighter). The Hillrom pump looks quite portable -does it have to be?

I'm guessing that the vest is quite rigid, and bladders inflate/deflate within it to compress the chest. How many bladders are there, and what sort of size & shape are they?

I know I'm being simplistic here, but how's this for a DIY replacement?

  • Pump = a single large cylinder with a piston attached to a crank and motor (the motor turns, the piston slides in and out of the cylinder, pushing and pulling air through tubes to the bladders.
  • Vest = a weight-lifter's support belt or an old-fashioned corset, depending where you want to put the bladders.
  • Bladders = two pairs of hot-water bottles, two under the front rib-cage, two at about kidney-level behind.
Or have I completely confused myself and the issue?
teachermom (author)  Kiteman9 years ago
The vest itself is a flexible fabric with air pockets which inflate when the air compresses from the compressor thru the 2 hoses, so the patient has to be stationary, whether they are seated on the bed, sofa, or in the front seat of the car on their way to some appointment or traveling. Two turn knobs on the compressor control the timer which can be set for any time (usually about 30 minutes)as well as a knob that controls the compressions that the vest causes. This action replaces the manual pounding that we had to do when she was a baby to loosen the muscus that builds up in the lobes of the lungs. The vest treatment occurs at the same time as the neubulizer treatment so that inhalation of meds (liquid to gas) go in thru the mask or mouth piece while the vest works to loosen what needs to come out. The duel treatments enable the Cf patient to breathe easier, and keep their lungs clear so that scarring does not occur. Generally these treatments need to take place 2-4 times a day. If you can't carry your vest system with you, then you miss those treatments and muscous builds up, increasing ones likelihood of getting an infection which can result in hospitilations. So, the question becomes what makes the vest system so expensive, and can one be created that weighs less and cost less? Teachermom
Not knowing from whence you hail, I would submit a bit of caution about trying to duplicate a medical device. Some of them have extremely accurate mechanisms involved that a home device might not have (including safety protocols).

Even a device as simple as a blood pulse-ox can become a problem if certain guidelines are not adhered to. (this is my normal paranoid and cautionary self coming through :-) ).
Patrik Goodhart9 years ago
True. However, it may be possible to reuse the existing vest, and hook it up to a lighter compressor. The vest itself is probably the hardest to get right for a DIYer. Teachermom - is most of the weight in the compressor, or is the vest itself too heavy/bulky for travel as well? Do you know whether the vest your daughter uses now is essentially the same design as the Hillrom version? If you can get some information off your air compressor (wattage, psi, ...), that may be useful. The Hillrom system as well, if you know someone else who has one.
teachermom (author)  Patrik9 years ago
Yes on the hoses, they are easily disconnected....they just pop out of the vest insert and sort of untighten from the compressor. The vest itself weights only ounces. The compressor has a handle across the top, and it is just about all I can do to lift it and move it across the room. I purchased a little rolly platform that you use to move file cabinets for her to set her machine on, and it doesn't exactly fit squarely but it works. It is not even practical to think about traveling with because it would take a strong grown man to be able to haul it anywhere of consequence. I have seen the Hillrom version at a CF conference and it looks like a small boombox weighing 17lbs. and when my daughter traveled to Europe for six weeks, Hillrom actually let her "borrow" the light-weight vest system. Her vest hoses just plugged right into their compressor. So, no additional vest equipment was needed. And my daughter loved using the HRom system. But $16,000 is a lot of money for a CF family. Tmom
Patrik Patrik9 years ago
Oh - and are the hoses connecting the vest and compressor easily disconnected? I'd assume so, but we don't want to start cutting up a working device...
Leper9 years ago
Hi,

I have cystic fibrosis myself; Eric pinged me about this thread.

I also have one of the American Biosystems vests, although I've been using it less now than in the past. Currently I do mostly what I guess is called "autogenic drainage" during two long (90 min) nebulizer treatments (Xopenex, hypertonic saline) in the morning. I've found that very effective. I basically keep coughing each morning until nothing else comes up.

First off, I would suggest looking at some of the portable percussion devices that make use of your own exhalation to drive a percussive vibration in your lungs. They might not work out for your daughter but they are small and cheap---worth a shot. The first one was called the Flutter ( http://axcan.com/flutter_us.php?lang=1 ). There is another one that I can't remember the name of. Ask you doctor for advice; he/she would know the name of the newer one. The Flutter weighs about 3 oz, so it is extremely portable. It is more work to use than the vest, so if your lung function is low to begin with it can be taxing to use. My other complaint is that the darn thing is right in the sight path of a book in your lap, and that is a serious negative for any treatment! If I can't read during treatment, my compliance goes way down. (I don't do television, another popular option.) I used to use a Flutter on trips, but like the Vest have mostly replaced it with the autogenic drainage. I'll have to post my hacked portable travel compressor :-).

I would second the cautions on a d.i.y. vest option here. It's not that you're going to get hurt (you'd know if you were getting hurt, and CF physical therapy is not particularly gentle to begin with) but rather that it's a pretty difficult thing to construct. The American Biosystems device is the result of a lot of years of development in an academic/hospital setting and the early units were not reliable. That's why the current one is built like a tank. (But I agree, it is definitely not portable!) As to why things are expensive, sigh, insert generic rant on the American health care system. And honestly the market is pretty small for something like this; the R&D and engineering costs are split over few thousand users.

Travel with cystic fibrosis is difficult. I invariably feel worse after a trip. Airplanes air pressure drop is bad. Airplane shared air is bad. Hotel "air fresheners" (bleah!) are bad. My wonderful friends' wonderful pets are bad. Staying up until late because I'm on some work trip where it can't be avoided is bad. I don't mean to imply that your daughter should not travel (I've been overseas a few times and I'm glad I did it) but everyone feels like heck after getting back from a long trip and there's a lot more risk of permanent impact if you have CF. I would think hard before taking a job that requires constant travel, such as management consulting.

-Rob

teachermom (author)  Leper9 years ago
Thank you for your replys. Excellent fodder for thought, and insight. I know that years of R&D go into this, and I know that is what we're paying for, but it seems like it is just a machine that can pulsate air. I also know that if we just accept what we are given, and never question a better way, we will be stuck with what we have. Teachermom
sugg229 years ago
i'd first like to say that i havebo experience building anything of this sort, nor anything having to do exclusively with cystic fibrosis. however, i did have a concept, although i don't quite know how to build it. would it work if a small air pump (Home Depot Air Pump) was set to a timer, and gave off a burst every second into an inflatable bladder? they make life preservers that are inflatable and deflatable (here is an inexpensive life vest that might work). hopefully, i got the gist of what you are talking about, and this might help. if not, sorry for wasting your time. please tell your daughter that all of us here at instructables have her in our thoughts and hope that her condition improves.
sugg22 sugg229 years ago
also, for a great portable nebulizer that is fairly inexpensive as far as they go, please check out this nebulizer if you don't already have one or one similar. i have had this one for a few years, and it has worked great for me.
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