Let’s get some community feedback going for the masses with this topic. It’s something we’re all familiar with unless your mutation rocks and your lungs are pristine without this much treatment. You are welcome here, anyway, but you are a rarity.
I’ve had all four of these in my years. About 13 years of manual chest physiotherapy, a couple of years trying Flutter in the car on the way to school functions, years of non-compliance with the very old Hill-Rom Vest that never stayed turned on because of that stupid foot pedal, and now a new inCourage Vest and Acapella.
Here are my thoughts and results from each:
- Manual CPT – In my opinion, this is THE best method for airway clearance when done properly. The downsides are the obvious space/time requirement, as well as a willing second party unless you’re somehow able to do it yourself. You can’t help but cough if you have anything in a particular lobe that needs to come out. If I had unlimited time and resources, I’d opt to have this as my treatment, but I have a life/job, and so does Beautiful. It just wouldn’t work for us.
- Flutter – I’d rank this as the second best. I was able to get the percussion sensation longer with Flutter than Acapella, so I think it did more, and I seem to remember it being a stronger feeling, even though the Acapella is adjustable. It’s so small, it’s ridiculous, not to mention it only being 3 parts and the easiest thing in our arsenal to keep sterile.
- Vest – Not all vests are created equal. I couldn’t be happier with my inCourage Vest system that I got last August, but it serves a purpose, but not the one I thought. I don’t go crazy coughing with it, but it does a fantastic job alleviating any wheezing I have at the time. It’s quite expensive, even with insurance (our durable medical equipment co-pay was still $1200, and I have an excellent HMO package. Is it worth it to me? Absolutely.
- Acapella – I have 2 of them that I bought out of pocket because my HMO wouldn’t pay for the device. I was keeping one in the car for my way to school if I had a wheeze and I keep one by my Vest. I find using both the Flutter and Acapella exhausting to use because of the deep breathing and strenuous spasms that follow, but I know they work.
Which method(s) is/are your preference for airway clearance?
Do you consider exercise a form of airway clearance? It is the most effective for me. I usually find an hour a day at least 4 times a week to be physically active. I find exercise promotes a productive cough and I feel great afterwards. I realize not all CFer have the strength or ability to use this form of airway clearance. I am thankful it is an option to me. I try to not let a day go by where I take my ability to exercise for granted. I also use the Acapella every evening. I don’t notice an immediate difference while I use it, but I do know it is working out those lungs too.
When I am too sick for the gym and my symptoms are really elevated, I use the VEST. The VEST leads to a productive cough, but only when my symptoms are elevated. And as much as I love the feel of manual, as you stated, its hard when you need a second party to participate.
Ok, maybe more information than necessary. Thanks for giving me the opportunity to give my opinion.
I definitely consider it another form, but in this Tampa weather in the height of summer, it’s not much of an option for outdoor activities. We need to get off our butts and Wii Fit and DDR like we used to, but life has just been too exhausting recently.
As soon as it cools down a little, I’m going to see if I think I can put out for the 25 mile Cycle for Life. Beautiful has her concerns, but I don’t think it would be a big deal. The wheels on the bus go round and round…
I do autogenic drainage. I find it very effective, hard work sometimes, but totally worth it.
I agree with your list from top to bottom in terms of coughing up mucus. I was pounded by hand for the first 20 years of my life twice a day by hand. I’ve broken multiple flutters by throwing them against the wall out of frustration of coughing my brains out and throwing up. I also share your same exact review of the Vest. I don’t think it’s the greatest thing since sliced bread, but I can tell you that it’s better than sitting on my couch and doing nothing. I don’t have much experience with the acapella.
And lastly, couldn’t agree with more with Colleen, exercise in number 1-10 on my list. I think it’s important to use in addition to, and not instead of, but nothing gets me coughing up more junk than a good run 🙂
Ronnie
CG sent me a link for that, but I haven’t tried it. Lemme read through it again and then I can report back on it.
It feels good to be right. 😉 If you have an extra Flutter, I’ll trade you an Acapella. 😉 I can get a script and send it to you, LOL! I just don’t want to put out the money for a Flutter with all the other crap going on with co-pays and deductibles until I hit my out-of-pocket max.
I can comment on what works for J. I am entitled, I know him better than he knows himself. 🙂 Just kidding of course, but I do know what he does when he really needs relief. If there is a particular area of his chest bothering him, he will use the hand held percussor. It is at least 15 years old, but still does the job. I don’t have the strength to beat on him for more than a few minutes. This does the job of a respiratory tech. He just gets tired of holding it. Flutter is after this. He hates it, but it does the job. The light-headed, dizzy, wanna puke feelings are what he hates. His Vest, which is a newer Hill-Rom, much like the inCourage, is third. He doesn’t feel like it is as effective as the first 2, but will resort to it when he is too tired for the others. Funny thing is, we finally got the “final” bill on his Vest. He got it May 2009. After insurance was billed and they paid, we owe $700. The Vest was over $16,000. I don’t know what we would do without insurance coverage. He doesn’t have the Acapella.
The last time I had to use my Acapella for actual relief, Beautiful was right next to me on the couch and she could tell I didn’t want to do one more blow. If she wasn’t there to rub my back, I wouldn’t have. Too much coughing almost blows out my brain and I’ll get a Vicodin-worthy headache and try to not exert myself the rest of the night.
Our Vest came out to about $11,000 and they sent us a bill for $1,200. We settled for $1,000 with a one-time payment because we told them they were going to have to wait a while to get that much from us. It hurt to pay that much for something that’s not fun, but it was all paid for.
When you get $4k of enzymes for $35-$50, how can we complain about insurance? I can’t, really, unless something that should be covered, isn’t.
His enzymes are about the same cost retail and our co-pay is about the same too. I can’t complain when he gets his Tobi that retails for $4K and our co-pay is $40. Thanks to you, we just cut our Pulmo cost too.
i havee benn using the flutter lately and i feel like it works alot better than the vest, because i cough so much more when using the flutter and it really seems to bring up the mucus. when i do the vest i barley ever cough. though the vest is less work. doing the flutter takes alot of energy out of you. though i do feel like it works better.
That’s how I feel and is probably the way I’ll go as soon as I’m sure it won’t cost me too much to get a Flutter – durable goods are hard to predict, but I think I’ve met my annual maximum, so it should be free or just a co-pay.
As a stubborn old-timer (44), manual CPT is my favorite and most effective. However GERD & stomach surgeries made lying upside down problematic, plus I was single for many years so didn’t have help, and the vest was my only option. However, I find that wheezing can be very aggravated by the vest. I recently fell and broke one shoulder and sprained the other and finding CPT options has been a nightmare and very stressful — finally tried the Acapella, don’t love it either. There is a band that goes around your middle only so you can still use the vest (unfortunately didn’t find that out until 3 weeks in!) Recently also got the Electro Flo 5000 percussor, a huge improvement on the Strom percussor of my childhood/college days for sure! Still hard to hold with sore arms, but love that I can get a nice session in on my front lobes and have my husband do my back (if he’s home). So I use the Electro Flo to complement the vest and am happy with that arrangement until I have a personal respiratory therapist always at my beck and call 🙂 Interestingly, insurance covered my vest and Electro Flo but not the Acapella.
I would be interested in knowing how much time people really spend doing their CPT routines.
I found the Electro Flo a couple of weeks ago but was concerned that
insurance wouldn’t go for it since I have the Vest already. Suppose we can
ask.
I have the original American Biosystems thAIRapy vest. I agree with the foot pedal issues, but it made a huge difference in my life. As an adult, the idea of manual CPT is not fun, especially if I had no one to help. I’d love to see the new vest – my compressor is the size of a carry on suitcase, and I know newer versions are way more compact. I like the acapella, like the flutter better, but NOTHING compares to manual CPT by a good respiratory therapist if I’m sick.
I have a 3 y/o with CF and we got the SmartVest when she turned 2. I didn’t know it going in but found out after insurance paid out that Electromed would write off the remaining balance. All I had to do was send in a letter stating we did not have the ability to cover the remaining charges which were $6,703.92 (10/18/2010). I haven’t found that the vest generates a productive cough but we do it loyally twice a day. Maybe it’s because she’s still young. We just got results yesterday for a positive throat culture (pseudo). We’ve been clean for 2.5 years so this sux but I’m very thankful for the treatments available.
The good news is that the Vest isn’t to blame for the culture, but Cayston should take care of the p.a. culture. I’ve been positive for a good 30yrs. p.a. is like another limb for me.
Throughout my childhood I was given manual physiotherapy; basically, my parents had me lay over a pair of stacked pillows and then slapped my chest with cupped hands repeatedly and very thoroughly for approximately twenty minutes. I’m not ungrateful for this method, as it undoubtedly worked; kept me from getting sick and seemed to help me to cough up all that I needed to.
My mother was particularly good at this, for she was gentle yet thorough in helping me be phlegm-free. However, when my father would do this, he reasoned right from the beginning that it would be MORE effective the HARDER he hit my tiny, malnourished-looking infant torso with his giant hands!
Thus, twice a day for more years than I think I deserved for being a small child, I was practically beaten to silent tears by a grown man for up to thirty minutes (“What the hell are you yelling/crying/wiggling about for, you stupid wuss? I’m doing this for YOUR sake, not MINE!”) or longer; he’d watch television as he did it, and therefore often forgot that he should stop.
I was a timid child made to ache all over because my nipples were being quite-literally tenderized like chunks of meat each morning and evening! I didn’t dare shout (sometimes I couldn’t help it) because he was generally, well, a very bad father… and I’ll leave it at that. He wouldn’t even let me go until I’d thanked him profusely for taking the time out of his busy day (Pft!) to “help” me and apologized for being annoying.
Yeah, to be honest, it’s traumatized me: I loathe my father…
So, as a pre-teen child I had an angry salaryman several times my size whack me until I could barely breathe and tears were rolling down my face (try taking a deep breath when someone’s punching you in the stomach) multiple times per day for what would later turn out to be a method they’d APPARENTLY debated upon in medical circles for a long time and long since decided was USELESS or more apt to PREVENT the release of mucous and phlegm, as one’s airways would tighten up with each beating! So in the end it was all for NOTHING?!
Part 2 of 2.
Much to my delight, I got to move onto various breathing exercises that, needless to say, were far-far-far less painful, easier to do, and the only problem they created was needing to position my body so that I was lying at around a 20-30 degree incline, head-first. This led to getting a huge clunking ‘bed’ to do it on, which was clumsy and heavy, but I’ve not ONCE complained about this… it has to be one of my most FAVORITE means of fixing my disgusting, mutated and physically-ill self.
First, I’d place the ‘Flutter’ or ‘Acapella’ devices: the simple ones that’re easy to assemble out of plastic pieces, are blown into and have a variety of different settings.
I’m sorry for whining: I know that you’ve likely had it much worse than I have, and complaining about it doesn’t do anything; it never did anything for me in the past, but at least I’ve got a rather high tolerance to pain now–some good came out of it?
I’d gladly pay any amount so that NO child has to go through something like that; or at the very least, the documentation should say that the patting (not hammering your palms into someone’s chest like a sumo wrestler) must be GENTLE.
Thanks for letting me get that off my chest. Again, I’m sorry for complaining to someone who has the same illness as I do and has more-than-likely had it worse! I’m an idiot.
Hi,
We have just released a free and open software to monitor the usage of the Flutter from an iPod touch, iPhone or iPad..
Called Flower Breath, this current released is target to get feedback from users and practicians, in order to adapt it.
see: http://defitech.ch/FlowerForAll-en
Regards
Pierre-Mikael
Defitech foundation
My opinion is that NONE of these systems are effective for us if we don’t learn how to breath to expel the mucous.
An awesome respiratory therapist taught me something I will be forever greatful for. (and this was at a ‘non-CF hospital’ She had never had a CF patient) She watched me do my Vest and watched me cough. She then lectured me that 1) the vest was designed to be stopped every five minutes and coughing initiated. Purposefully, not just stopping when “the vest makes you cough” 2) The type of loud (sounds like a sneeze) or wheezy cough we normally do just is effective to clear your main airway if you have any junk there. All of our forms of therapy are designed to try to GET MUCOUS from the small airways to the main airway to be coughed up. She said that when we cough like that we are forcefully tightening down on the airway (she made fists and showed a twisting motion) and said 1/2 of what we were going to cough up makes it out and the other gets shoved back down. She said it’s an exhausting way to get light headed and lung bleeds, and not get a darn thing out.
Then she showed me what is very similar to autogenic draining. After I finish a cycle on my vest and reflexively cough a “regular cough”, then I slowly inhale through my nose, filling up my lungs and then regularly (you don’t have to blow hard) just exhale out through your mouth and push it until you feel you are at the edge of coughing and then repeat…. Inhale through nose, filling your lungs, Exhale everything, blowing it all the way out (my breath sounds usually are crackly—which is good! That is small airway junk that needs cleared.) Try to keep repeating it until you absolutely HAVE to cough it up. Basically, the first breath begins to mobilize your small airway mucous. Each breath you do pushes it further and further, until you have in in your main airway and nearly in your throat. I usually try (as a goal) to do 15 at a time. At first it may only be 5, but as it starts to get looser (sounding noisier as I blow out), I am able to do more. THINK OF WHEN YOU DO YOUR PFT’S. Its the same thing, you just don’t “blast it” and you breathe in through your nose and out through your mouth/pursed lip breathing. I can honestly tell you I can sit and do any other treatment and cough maybe 4 tissues full during any treatment with regular breathing, and when I do the breathing—– I need to get a toilet paper roll and plastic grocery bag. I will cough up about 15-25 kleenexes and finish much clearer.
That said, I do my vest twice a day—- not always doing my breathing like I should (I think I get in a trance on the computer) The best think in the world for me, and I honestly think If I can do this on a daily basis is Manual CPT. I still have my tilt board my parents bought at a CF conference in Dayton , OH about 30 years ago!! (mom lives with me since her divorce and we rock it “old school” lol) We googled the positions and printed it out. Not much has changed since the good ole days. She will clap on position one and then I sit upright and do my breathing to cough up 2-3 times or until I have gotten enough to move to the next position. Even when we are doing the positions that tilt, I slide off, sit on the floor and do a few cycles of the breathing—then get back on the board and go to the next one. It takes us about 1 1/2 hours, but is soo worth it.
Do you find yourself coughing up stuff you didn’t realize you had when you do PFT’s? Similar concept. If you don’t have someone to do Manual CPT. you can use your vest as Dr. Warwick intended it (hence the footpedal or the quick start program on the Incourage) and truly pause between cycles and to the breathing.
😉
Missy