Thursday, October 29, 2009

Rockin' Out and Coughin' Out

Disclaimer #1: I just want to make it absolutely, perfectly, 100% clear from the outset of this post that neither I nor anyone else with any association to A Matter of Life and Breath is receiving any form of compensation or incentive whatsoever for the below-posted message. And yes, I know that even posting this disclaimer makes me seem like an overly cautious lawyer (so sue me -- ha,ha), but it's very important to me that my readers know that I am endorsing this product because of my PERSONAL experience regarding its effectiveness, and not because of any underlying obligation or reward. I also want to state the obvious by saying that I'm not a doctor nor a scientific researcher (one look at my Biology grade in high school will tell you why), and I can only make statements based on my own observations and results.

Got that? Good.


So a while back I posted that I was trying out a (relatively) new form of airway clearance called The Frequencer. I also promised that I would post my thoughts on the machine at some point, although you may not even remember that because it was frankly AGES ago (by which I of course mean last month -- time does not go by quickly when you're waiting for new lungs). Anyway, I tried out the machine, loved it, and then had to wait on my insurance to approve purchase so that I could have a Frequencer of my very own. As of this morning I'm happy to report that I'm the proud new owner of one of these great machines, and therefore feel that it's finally appropriate to come out and share my thoughts honestly here on the blog.

Disclaimer #2: Before you read any further, you should probably know that I'm what might, in less polite circles, be termed an "airway clearance slut." In other words, I tend to jump around a lot and mix things around when it comes to shakin' things up. Over the years I've been a known user of the following methods: CPT, percussor (early version -- not particularly effective), autogenic breathing, Vest (original TheAirapy version), Flutter valve, IPV, back to the Vest (Hill-Rom 104), alternating Vest/CPT, and now the Frequencer. So I kind of feel as though I've tried a lot of what's out there, and most of these methods have been at least somewhat effective for me. In fact, I think a lot of the effectiveness of these machines, in my case at least, was due to the time/circumstances in my life and my willingness to use the methods correctly and consistently. This leads me to the following conclusion:

The best form of airway clearance for you (or your child) is probably the one that is both easy and convenient to use AND makes you (or your child) feel better. Case in point, autogenic breathing was probably my biggest failed experiment when it comes to airway clearance. Why? Because I was too young and hyperactive to concentrate and do it correctly. Now days, on the other hand, I use the autogenic technique often to bring up gunk during and after my treatments, and it's wonderfully effective. What changed? Well, my lungs have changed some, but I think the biggest difference is that autogenic now meets my criteria: it's easy for me to do, convenient to use in between "cycles" of other methods, and I know it makes me feel better. Voila -- a perfect recipe for extra compliance!

Okay, so back to the Frequencer. Basically this is a machine that uses sound waves to create a vibration in the chest similar to what you would get with CPT or the Vest. It's actually kinda funky to use: you hold a speaker (honestly -- it's a handheld speaker!) to your chest in various positions on each lobe at least 3 minutes or so. The speaker has to be held to form a "seal" on the chest, and then sound waves move through the speaker and travel down into the lungs where they create vibrations. You can control the frequency and volume of the sound waves, sort of like you control the frequency and pressures with the Vest, and you can also control where on the lung the waves are hitting, sort of like you can control where you pound in manual CPT. The machine is basically silent (at least when you have the proper "seal" of the speaker against your chest) and you also only have to do the front (or the back) of the chest because the sound waves travel through muscle easily to vibrate the whole lobe. The machine is much smaller than the vest, but to be honest it comes in a much more intense roller bag (hard shell), so in the end it probably takes up a similar amount of space when it comes to traveling. Much easier to set up though -- you just plug in the machine and choose your speaker size and go. Once you figure out which frequencies/volumes work for you then you can program them into the machine's memory, so you don't have to adjust the settings every time.

Interesting fact: the Frequencer was actually invented by a cystic who discovered that standing near speakers at rock concerts caused coughing. It's like the "mucus, (prescription) drugs, and rock & roll" method of CF care, and you gotta love that.

My personal experience? Well, after two weeks of using this machine, my doctor told me my lungs sounded clearer than they had in a long time. Prior to that I had been using a combo of the Vest and manual CPT, because my mom is here pre-tx to help me. For me, the big advantage to CPT is the ability to "target" specific lobes -- I have a huge amount of trouble with my upper left lobe and often feel like it needs "extra" attention. I have to say that I LOVED how the Frequencer felt, and I loved being able to get the focused attention on whatever lobe I needed without relying on another person to help me. (As a sidenote: I'm pretty sure my mom enjoyed the break too -- much as she loves adding extra cardio to her day in the form of banging on her adult daughter!)

I used the Frequencer for 5 minutes in each of the 6 positions (stopping to cough after each), giving me a treatment of exactly the same length as my Vest. I found it easier to recline slightly and watch TV or something while I did it -- your chest muscles need to be relaxed and sitting up can break the "seal." This brings me to my only real "complaint" about the machine, which is that it requires at least one hand to hold the speaker, and that coupled with the fact that you're lying down can make writing and even reading a little tough. Consequently I did less reading (which I do while vesting) and more watching TV during treatments. I also never nebbed while doing the Frequencer, which means actual treatment time was a little longer. No one told me specifically NOT to neb, so I would ask your doctor, but I certainly never did it -- the positioning would have made it difficult anyway.

But, oh, the advantages! Beyond the targeting lobes and the general effectiveness of this machine (FOR ME!), I loved not having to feel squeezed at a time when it's tough to breath anyway. I found myself actually not dreading treatments -- shocker! -- because I liked the way the machine felt and I knew it was working, plus I got to do it all on my schedule. It didn't turn me red and itchy. And guys, avert your eyes, but it didn't cause the infamous "boob squish" that some methods (ahem) are famous for.

For those of you interested in trying out the Frequencer, I did get permission to share contact info for a rep. who can come to your clinic and help set you up with a free trial. The company handled all the work to get me my own machine (from soliciting my doctor for a letter of necessity to submitting the paperwork to my insurance) and I was lucky enough to be approved pretty quickly. I decided to share this info only because I know some CFers who want to try out this machine have had some difficulty figuring out how to go about it.

Kathy DiLeonardo, RN
SunMed Medical Systems
Office Phone: 865-797-4384 ex. 119
Email: kathydileonardo@sunmedmedical.com

You can also feel free to ask me any questions and I promise to give honest answers.

Disclaimer #3: A very wise cystic (you know who you are) once said to me "one person's CF has nothing to do with another's" in terms of progression and severity. I would add airway clearance to that list. We know that there are methods that work in the clinical sense, but I've been around the block enough times to know that clinical evidence doesn't always translate into perfect results. So if you really want to know what form of airway clearance works for you or your child, I would encourage you to "shop around" a little bit. Haven't tried manual CPT in years? Well, ask someone close to you to have a go at your chest (come on guys, get out of the gutter!). That Flutter gathering dust in your closet? Sterilize it well and let your kid try it again. Think the Frequencer might be right for you? No harm done to give it a try. I know most of us have limits as to what our insurance will give us (ah for a perfect world), and I'm not saying don't stick with what you know works for you, but I am saying that airway clearance for me has been a constantly evolving art form. I was lucky enough to have a pediatric doctor who encouraged his patients to try new things and combos in order to get the maximum possible, INDIVIDUAL result for each person, and I hope that's the message of this post.

As for me, I'm off to celebrate my new machine and do a little rockin' out of my own -- no disclaimer needed.

13 comments:

  1. Hey Piper, you lucky Duck!!! I've been waiting for them to figure out something with my insurance company so I can get one too. I went through a trial in July and totally loved how it worked. I think that because I'm a chubby cystic the whole vest jiggle you thing just did NOT work... It wouldn't ever penetrate to my lungs and get anything moving. But the frequencer... that was just so effective for me too. I'm going to try the rep you went through because the one I tried hasn't had any success with insurance. Glad to hear you're getting one. CONGRATS!

    ReplyDelete
  2. Sounds very cool!! This is the first time I have heard of the Frequencer! Sounds like it has definitely benefited you! I never could use the vest because of scoliosis, which the vest caused too much back pain. So manual CPT was the form we did the majority of the time. Right before transplant I used the IPV machine, which at the time i loved!

    Hope you are doing ok....like you said, time crawls when you are waiting on new lungs! Praying that time is soon...God's timing is always perfect!

    ReplyDelete
  3. WOW! I love great inventions like that... amazing! .. and so happy you like it!

    ReplyDelete
  4. I'm totally interested in giving it a go. My problem areas are my front upper lobes because, well, the vest doesn't cover that area and I'm too lazy to do manual on myself twice a day there. At least I admit it right?

    I'm glad it's working on you!!!!!!

    HUGS for you and your fam and Sammy bear!!!!!!

    ReplyDelete
  5. Thanks for telling us about it and glad its seemed to work for you! Maybe post a picture at some point so we can see what you're talking about? Thanks

    ReplyDelete
  6. Thanks for the info!! I am currently looking into alternate clearance ideas for Gess as he doesn't seem to like the vest (he has the Respitech now, which he likes better than the Hillrom). I am looking into a precussor now, but I am going to pass this info on to him too!

    Lisa

    ReplyDelete
  7. Piper that's AWESOME!!!!!!!!!!! Thanks for sharing so much info on it! Definitely looking into it :)

    ReplyDelete
  8. Great info! Autogenic breathing is one of my new favorites too. I always thought it was useless, until lately. Now I find that it works really well. Congrats on your new system- it's now on my list of things to try!

    Thanks for your message the other day. I have really enjoyed reading your blog. I remember finding it months ago and staying up half the night to read it all. I was just starting to deal with the overwhelming thought of transplant and it was almost a relief to find your blog. Thanks again for sharing your story Piper.

    ReplyDelete
  9. Hmmm never heard of this Ill have to give it a whirl!

    ReplyDelete
  10. My hubby just got a trial frequencer! Yea!

    ReplyDelete
  11. Someone ask for a picture of the frequencer I found one on youtube showing how it works.

    ReplyDelete
  12. Hey! God Bless You guys!

    Keep on Fighting, Keep On Rocking this World!

    Love You All...

    These are my pay...

    ReplyDelete