Vest too big and ineffective?

Question: Yet another question. This one is about the vest. They ordered mine while I was pregnant. But now I'm not sure if the fit is right & if it's working as well because of that. It poofs up quite a bit even with the straps pulled as tight as possible. I personally don't feel as if it's doing too much good. Just wondering if it truly does make a difference. 

Response: Yeah, it may be too big. But, I've found that I have to mess with it quite a bit for it to feel "just right". Be sure that you're sitting straight up and that nothing is putting pressure on the vest from any angle. Many people sit back in a chair or on the couch and that lessens the effectiveness. Mess with the shoulder straps, the clip straps, everything.

Be sure to mess with the pressure as well as the frequency. It should always be going up, or down, but never stay the same. You can find some good recommendations on CysticLife.org as far as exact settings go. And finally, actively do you're vest. Don't sit there mindlessly on the computer with a neb in your mouth taking shallow breaths repeatedly at the same rate (which I can be very guilty of). Breathe in deep, exhale fast. Breathe in slow, exhale slow. Huff cough. Take time to really cough your brains out.

There is certainly nothing magical about a vest. If we treat it as a piece of clothing that happens to shake, we'll get nothing out of it. We need to treat it as a workout that requires participation.

The Ineffective Vest Treatment

inCourage System by RespirTech

If there's one thing I'm guilty of, it's not getting the most out of my Vest each and every time I strap it on.

Here's what an ineffective Vest treatment looks like:

I sit down at my computer desk and load my nebulizer cups with whatever medicine is due. After loading the cups up I place them on my desk in the order of which I take them. After my inhaled medications are all set to go, I reach over the back of my office chair and grab my Vest jacket (For those that are wondering, I happen to use the inCourage system by RespirTech). After my Vest jacket has been buckled on and the tubes coming from the machine are attached, I'm ready to rock!

The next order of business is to decide which pre-programmed set I will use. Depending on how long that particular session will be, between 30 minutes and 1 hour, I select program 1, 2, or 3. There is also a "quick start" option, but I tend not to use that very often. After selecting the program, I start shaking and then stick a neb into my mouth.

This is where the ineffective Vest treatment begins...

As soon as the Vest starts shaking and the neb starts puffing, I immediately get on to the tasks of the day. Whether it's e-mail, bills, social media, CysticLife, surfing the web, or more e-mail -  the one thing I'm usually not as engaged in is my treatment.

My breaths tend to be shallow in nature. I barely cough the entire time that I'm shaking. I never inflate my lungs fully. I allow the Vest to continue whether or not I feel that it's effective. Then, after 30 minutes or an hour, my Vest will stop shaking and I will move on to the rest of my day.

As I alluded to earlier, there are many times that I do not cough once in a Vest session. Now, the question has to be - is that the Vest's fault or my fault? If you know me at all you know how I will answer that question.

Ineffective Vest sessions are my fault. If and when I start doing engaged Vest treatments every time I put the thing on and then continue to receive an ineffective treatment, we can talk about what role the Vest can play in not making me cough.

Until then, I need to change the way I approach a Vest treatment if I would like a different outcome.

Hers's where you come in. Have any tip or tricks that you use for a more effective Vest treatment?

The Ten Things That Make My (CF) Life Easier

This idea actually spun off from me thinking about how thankful I am for different things in my life. I then got to thinking about how much easier my (CF) life is because of certain things I've either bought, inherited, or stumbled upon. Here is the top ten, actually 16, and why I think they make my life better.

16. Good Veins- Having hoses running through my arms has given me the privilege of avoiding multiple sticks most of my life (except this time). I'm not sure if it's something I've done, or just inherited, but I do know that they have made my CF experience more enjoyable. I've had 30+ PICC lines though so who knows how much more they can take.

15. Foot Orthotics- The jury is still partially out on how much the orthotics will help me maintain my running schedule, but so far, so good. I haven't had any major pain to speak of since getting them made for me (Thank you POA and Lindsey).

14. Gyms- I've lived in Arizona my whole life and so far it's been 100+ degrees every summer. That's certainly not optimal outside work out weather. Luckily for me the concept of indoor gyms has been around since before I was born and I have taken full advantage of them. I've had a gym membership since I was 16 years old and although I have had several seasons of my life of consistently going and not going, the gym seems to always call me back to her.

13. My Friends- I've been blessed to always find myself with good friends. Friends who are there for me when I'm sick, but don't treat me like I'm sick when I'm healthy. They've always been understanding in that a CF life is atypical in nature but that it's important for that life to be as "normal" as possible. Often times it's completely forgotten that I'm "different" and they're always there to hold me accountable if I'm screwing up.

12. inCourage Vest System- Admittedly, I would choose a hand pound over the vest every day of the week. I got pounded by hand for the first 20 years of my life at least twice a day and I think it helped me immensely. But with that said, the vest is certainly better than a sharp stick in the eye and I'm thankful that I have a very light and portable one. I take it with me on every vacation and it's very easy to slap on while I work or browse the Internet. It's definitely an easy way to get in all of my treatments and I know that it's doing my lungs good!

11. Wintergreen Mints- It's probably just me, but I swear I breath better when I'm sucking on a wintergreen mint. I usually will have one in my mouth before doing PFTs as I think it opens me up a little. I of course have no scientific evidence to base this on, but sometimes believing that something good is happening is just as good as something actually happening.

10. Baby Bottle Cleaner- This is a fairy new piece of equipment in my house but so far it has produced wonders. I'm actually new to the whole nebulizer cleaning thing (didn't start consistently cleaning my nebs until March of this year) and I started with a hot pot at first and then moved on to just throwing them in a pot of boiling water. Now, I throw them in a baby bottle cleaner, add water, push a button, wait six minutes, and then presto bango, CLEAN NEBS! It's amazing I tell you and what I time-saver.

9. Protonix- So I used to throw-up every single morning of my life from about 1994 to 2004. This of course can be a major problem because I would eventually just be puking up stomach acid, which is not friendly on the throat, mouth and teeth. I had the same routine going of feeling sick almost immediately upon entering the shower and then about 5 minutes later I would start throwing up mucus that I had swallowed the previous night while asleep. I realize that much of this was probably psychosomatic and had just become a habit that I had fallen into, but when I started taking Protonix regularly the throwing up became less and less common.

8. Insurance- I know that I have some problems regarding insurance right now, but there is no doubt that I have been blessed with great medical care my whole life which has been paid for by my insurance company. I've really never had a struggle with getting stuff paid for, and with the exception of one time, they've never put the heat on my doctors for all of hospital stays (a direct phone call from me nipped that in the bud).

7. My Blog\The Internet- This blog has provided such a great accountability tool for me and a great way to express my views and opinions on CF and life (which happen to a lot of overlap). The Internet has allowed my to connect with people out there that I otherwise never would of as well as keep up with the happenings of the CF community and research at the click of a button. Have a question about Cystic Fibrosis? It's only a click away and you can actually get a straight answer from somebody who is going through the same kind of things.

6. Invacare 50 psi Compressor- Going from the PARI ProNeb to the Invacare Mobilaire has made a world of difference. I've cut my treatment times down by at least 50% and the medicine just makes me feel different when going in. It feels like it is having a larger impact on my lungs and it one of the best investments into my health that I've ever made.

5. My Love of Sports- Everybody who reads this blog knows that I preach being faithful with your treatments and staying active. Fortunately for me, I've always been 100% with staying active because of my love for sports. Whether it was tee-ball, YMCA basketball, high school football, or church league softball, I've always been involved in some type of sport. In fact, my longest career thus far has been coaching football which I did from 1998-2004. It required that I stay active just so I could keep up with my players!

4. Patience- Here's the deal, not everything in life is going to work out the way you want when you want. Throw a chronic disease on top of that and your life can be completely different than you ever imagined. There are ups and there are downs, but I've been given the gift of patience by God to see me through the down times. I realize that there is a plan and although I may not know exactly what that plan is, I know that He does and He'll accomplish His Will through me. I also know that His Will in my life will be 100% perfect and I was the man that he chose to carry it out. Sometimes it just takes a little patience for His Will to unfold, as it's not my timing, but the Lord's.

3. Mandi- There is no doubt that when God created Mandi, He had me in mind. There is no other way to explain that a woman exists that has everything I've ever hoped for and has opened my eyes to other qualities I never knew I needed. She is the biggest reason why I'm so committed to staying healthy. I want to be around for her for as long is absolutely possible. Not only do I want to be around, but I want to be the boyfriend/husband that she's always dreamed of. She is truly my best friend and a gift sent by the grace of God because I truly don't deserve a woman like her.

2. My Mom- When I thought of qualities that I knew I needed in the eventual mother of my children, many of them came from what I saw in my mom. She has absolute unconditional love and I knew that her family was what she cherished most. She has sacrificed more than I can list in order to provide me the best care possible starting in early childhood by selecting a job because of the benefits. She lived without so her kids could live with. She was incredibly soft and nurturing yet showed tough love when I needed it most (which was often). Most importantly though, she raised me to live my life and to never ever use CF as an excuse. That put me on the path in which I still live today, and for that, I'm eternally grateful.

1. My Faith- Truth be told, God has provided everything to me that has made my (CF) life easier. He chose my mom , He created Mandi, He gave me my talents and character, He provides me resources, and He put specific people in my life at specific times. I know that He also allowed CF into my life for a reason and that He also promises not to give His children things that we can't handle. He has already set my plan in motion and has given me the proper tools to navigate through life. I trust His plan is perfect, and thus far I wouldn't change a thing. Most of all, when I can't do it on my own (which is 99.9% of the time) He's there for me. When I need His strength it's available. When I need His grace, He provides it. When I feel uneasy, He gives me peace that passes all understanding. When I have doubt, He gives me clarity of mind. When I have sorrow, He is there to give me comfort. And when I have death, He will bring me home to spend eternity with Him.

Here's how I look at it: God and I signed a lease on my life when I was born, I don't know when the lease expires, but I do know that I'll go WAY OVER on the miles.

Treatment Time

I know there are plenty of CFers (and probably a good handful of CF family members and significant others) that hate treatments, and I get that. 2-4 times a day, you have to stop what you're doing, sit down, stick a neb in your mouth, and strap on your vest. When you're spending the day somewhere, you have to debate whether to skip a treatment or bring your treatments with you (which includes packing and unpacking cords, nebs, machines, meds, etc etc etc). Man, what a nuisance, huh?

I, for a while, was annoyed by Ronnie's treatments. I didn't like that we would have to go home sometimes in the middle of the day because he was feeling junky. And I still, at times, find myself being perturbed by the fact that Ronnie has to do 4 treatments a day, totaling nearly 4 hours a day. 4 hours away from time spent with me, right? WRONG! Not necessarily. Not if you fill the time right.

Ronnie and I have found a lot of fun things to fill treatment time with. We have found TV shows that you don't need sound for, like House Hunters or Property Virgins on HGTV (and actually, most HGTV shows are good sans sound). We plug headphones into a computer, each taking an ear bud, and listen to funny segments of a radio show in town. We sit at the table and play card games, Skipbo is our favorite. Ronnie will catch up on games that were on throughout the day, and I'll let the shaking of the vest "rock" me to sleep on his shoulder. We'll both pull out our laptops and play around on the internet; he'll do his blog, I'll stalk people on Facebook (shameful, I know). We'll catch up on email or get in an extra hour of work. We'll download a hidden object game (hidden-object-games.com, check it out).

Regardless of what it is, we use the time to be productive or to enjoy each other's company. I've realized that instead of it being "time out of the day", it can become a good excuse to spend quality time together. I've actually come to like Ronnie's treatments (just a little bit) and have started referring to it as "treatment time". Next upgrade to treatment time? We've decided we're going to get wireless headphones so we can watch TV shows WITH sound. WOOT WOOT!

What do you do during treatment time? Give us some more ideas :)

My Equipment

A lot of you have been asking me lately about what equipment I use in terms of a compressor, Vest and neb cleaner*. I thought I would re-post this just in case some of you were wondering but didn't want to bother asking.

My Vest:

The inCourage™ system offers state-of-the-art airway clearance therapy incorporating the most recent advances in high - frequency chest compression (HFCC) science. Demand is growing rapidly as physicians and patients alike express their preference for the advantages of theinCourage™ system. (http://www.respirtech.com/patients/respiratory-products/ICS1-overview.php)

My Compressor:

The durable MOBILAIRE 50 psi Compressor is ideal for use with medications that require more flow and pressure for proper nebulization. (http://www.invacare.com/cgi-bin/imhqprd/inv_catalog/prod_cat_detail.jsp?s=0&prodID=IRC607&catOID=-536885346)

My Portable Compressor:

The Invacare Stratos Portable Plus is a sleek, new portable compressor that will offer speed, ease-of-use and stylish design in one compact package. Small enough to fit in the palm of your hand, it will be ideal for those who desire mobility, expediency and efficiency in an aerosol delivery device. (http://www.invacare.com/cgi-bin/imhqprd/inv_catalog/prod_cat_detail.jsp?s=0&prodID=IRC1730&catOID=-536885346)

My Nebulizer Cleaner:

The Philips AVENT iQ24 Electronic Steam Sterilizer is the most sophisticated steam sterilizer you can buy and the easiest to use. It works quickly and continuously, keeping contents sterile until you need them, giving you more time to get on with your day. http://www.consumer.philips.com/consumer/en/us/consumer/cc/_categoryid_MCC_PREPARING_FOR_FEEDING_CA_US_CONSUMER/

*Oh, yeah, and I don't represent any of these companies nor do I benefit from them financially...my lungs do reap some benefits however!

Other links:

My Medications

My Supplements

My Pulmonary Function Test History

Top Ten Reasons I Prefer Hand CPT to the Vest

Before reading this list, know that I do my vest religiously and that I am VERY compliant with my treatments. Just because I prefer a hand pound to a vest treatment, doesn't mean that I blow off my vest treatment. In fact, I spend two hours a day on my vest. When I tell my doctors I'm compliant, I mean it, and I'm not going to lie to them. Plus, as I've already told many of you, the vest is certainly better than a sharp stick in the eye. Bottom line: You HAVE TO do your treatments if you want to stay ahead of this disease.

Without further ado, the top ten reasons I prefer a hand pound to the vest....

10. I can do it in the car. - I do get a lot of funny looks, but I am constantly pounding away on my chest as I drive and am sitting at lights. I especially like it when a song with a good beat to follow is on.

9. I don't have to worry about being hassled by airport security because of my hands. - I always get some sort of comment when putting my vest through airport security from "This is the biggest c-pap I have ever seen" to "How exactly is this box supposed to help your chest?". And of course, I can ALWAYS count on extra time as they make sure it's not some awesome bomb that I built.

8. It brings back fond memories of my childhood. - I don't know how, but my mom, dad or my step-dad pounded me twice a day everyday from the age of 6 months to 20 years. I was literally a grown man sitting on my mom's lap as she clapped away. But my fondest memories come from lying on the "wedge pillow" while trying to squirm away from my mom's grasp as she continued to "slap" me.

7. It doesn't give me hernias. - After my surgery for a complete intestinal blockage I had two subsequent hernias. They at least partly attributed this to lugging around my "old-school" vest. Lucky for me, the insurance company agreed and provided me with a new spiffy one.

6. I bring up mucus from my lower lobes. - I never feel like I'm getting much out of my lower lobes when I have on my vest. My lower lobes also seem to give me the most problems. Often times, after my vest, either Mandi or myself will whack away for a while and try to get the stuff out that's way down in there.

5. It puts me to sleep. - Even to this day, I almost ALWAYS fall asleep while getting pounded. When I'm in the hospital, it's common practice for the RT to have to shake me awake so that I can change positions.

4. My hands are a lot lighter to carry around. - A part of me always dreads traveling, even if just for the night, cause I always have to deal with my vest. Not only do packing it up and unpacking it bother me, but then lugging it around just kind of pours salt in the wound.

3. It makes me cough more. - I RARELY cough when I have the vest on. I have to be incredibly junky or be supplementing with some sort of breathing exercise to work up a productive cough on the vest. Conversely, it's really hard for me not to cough while getting a hand pound.

2. It's a cool bonding experience between Mandi and I. - From the very beginning, Mandi has been more than willing to "feel the burn" in order to give me hand CPT. The more she does it the better she gets (although she was a natural) and I'm pretty sure that she would make an excellent RT.

1. Plain and simple: For me, it's more effective than the vest. - I guess that doesn't really need an explanation.

So what do you guys think? Am I way off the mark? I know that in the CF community it is different strokes for different folks and there are those of you who swear by the vest and hate hand pounds. Maybe you guys could leave me some comments as to why the vest is better? And if, like me, you prefer a hand pound over the vest, leave me some points that I missed!

Asher's First Vest Treatment

I wanted to share this video of little fibro Asher doing his very first vest treatment. I've hung out with his parents Jeremy and Rachel and I'm very impressed with their great attitude and commitment to making sure Asher is the healthiest kid around. You can check out their blog at www.asherolimb.com plus follow them on Twitter at @RachelOlimb, @AsherOlimb, and @AbelDanger. Enjoy, this is a VERY cute video!

The Vest is here from zeropointD on Vimeo.

"New" Treatment for CFers

So we tried a new treatment the other day (out of pure boredom) and I thought I would share it with you guys. It actually got me to cough quite a bit. Not sure how long the vest would last though with all of the beating it took!

Do I Ever Get Sick of CF?

Instead of a video update tonight, I wanted to share this exchange between myself and a parent of a little CFer that I met on Twitter. If you're interested in following my Twitter account you can find me @RunSickboyRun.

Question from Twitter: i have a question, do you ever get sick & tired of having CF & having to do all the treatments?

My Response:
So do I ever get sick of having CF or doing my treatments? Yes and No. Let me explain, I have never nor will ever get sick of HAVING CF. See, I know no different. Since I don't know how the alternative feels, I don't know what I would "want" if it not for CF. To feel normal you may say; to which I would respond, what is normal? See I may have CF, but CF doesn't have me. Plus, who knows the type of person I would be with out. I could be a better person, but then again, I could also be worse. CF has shaped how I look at the world, my life, and my loved ones. I value the time I have on this earth and I don't take anything for granted. I'm actually thankful for CF and what it has done for my life. I know it sounds strange to some, but I constantly say that I am "blessed with CF". Do I have my struggles? Sure, but every one does. I have to learn how to deal with those struggles and navigate my life just like every one else. I love who I am (sounds a little cocky when I say it :)) and I know CF at least plays a minor if not major role in that.

As far as treatments go, of course it can be frustrating. But as with all things in my life, I try to spin it into a positive light. Since I know I have to be sitting many times during the day to do my treatments, I started doing more and more things online in order to compliment my treatment time. I'm a very active person and love to exercise and travel and I know without being healthy I can't do either of those things. So for me it just comes down to a "necessary evil" in my life. If I want to continue to live the lifestyle I'm accustom to, then I'll need to stay faithful with my treatments. It's as simple as that. If you want good teeth, you better brush and floss. If you want good lungs, you better do your treatments. I see it no different than that. I'm willing to make the small sacrifices (time to do treatments) in order that the rest of my day/life is enjoyable. I know too many CFers who sit around there house and complain about how terrible they feel and how much CF sucks. And I say, while you're sitting around feeling sorry for yourself, stick a neb in your mouth and put your vest on. It's all about putting yourself in the best position to succeed. The CFF has put a lot of money into giving us resources to aide us in navigating our lives and putting us into the best position to succeed. Why wouldn't we take FULL advantage of that?

Yes, I am currently in the hospital and will probably be here for a couple of weeks. The hospital is another one of those things that I know I need to do in order to put myself in the best position to live a full, happy and healthy life. If I have to be in here 65 days a year in order to have a rocking 300 days the rest of the year, then I'll take that deal every time. Every year of my life I've had WAY more good days than bad, so why would I have any reason to complain?

I hope that answered your questions and I thank you so much for seeking my opinion. Please don't ever hesitate to email me other questions and thoughts. You may also enjoy some of my older posts on the blog, here are the links: http: //runsickboyrun.blogspot.com/2009/04/cystic-fibrosis-doesnt-define-me.html, http: //runsickboyrun.blogspot.com/2009/04/mothers-manual-to-cystic-fibrosis.html, http://runsickboyrun.blogspot.com/2009/06/attitude-and-perception.html

Do Life,

Ronnie

So what about you? Do you ever just get sick and tired of being "sick and tired"?

And what about your treatments, ever feel like giving them up and just dealing

with the consequences?

Need To Save Some Time as a CFer?

If so, go to http://noexcusesnoexcuses.blogspot.com/2009/06/vesting-in-car.html. She has a blog up about doing your treatments in a car and how to make it happen. Great Post!

My Medications

Zenpep 20's: 9 with meals 4-6 with snacks
Albuterol 3ml/Atrovent 2.5ml: 3-4 times daily
Pulmozyme 2.5ml: 2 times daily

Hyper-Sal 7% 4ml: 2 times daily
TOBI 5ml: 2 times daily (28 days on, 28 days off)
Cayston: 3 times daily (28 days on, 28 days off)

Inhaled Gentamicin 4ml: 2 times daily (28 days on, 28 days off)(No longer using)

Protonix 40 mg: Once daily on TuThSat
Azithromycin 500 mg: Once daily on MWF
Multi-vitamin: Once daily
Vitamin D3 1000mg: Once daily
Vitamin K 5mg: Once Daily

inCourage Vest by RespirTech: 4 x 30 minutes per day
Orkambi 200/125: 2 times a day
Aminocaproic Acid 500mg: 2 to 6 tablets daily
Metoprolol Tartate 12.5mg: Once daily
Dulera 200mcg: Two puffs, Twice daily 

Other Links:

My Supplements

My Pulmonary Function Test History

My Equipment