Writing from England. I am a parent of a child with CF. We do not have the vest in England but would like to hear from people who have used the vest. Do you believe it makes a difference or not. I've heard it's very expensive. Do insurance companies pay for it in America? Would it be worth trying to get one sent over?Thanks.
The Vest
- Thread starter anonymous
- Start date
yes, yes, absolutely yes. the vest can be life changing. I will try to find you the email address of the vest co.I imagine they have a way to get it to you and to get your child's doctor to prescribe it. Our insurance co. covered it. My daughter has improved dramatically with the vest; she has used it for 3 years.
AbsintheSorrow
New member
Lots of people like the Vest... but also, lots don't. Pretty much.. you either love it or hate it. I hated it. I'm sure it does wonders for some people, but make sure you really want to try it before you go through the hassle of having one sent all the way over to Europe.
For me, the Vest has been a very effective component in my daily regimine. I began using it in 1992 and have gradually increased my usage over the years as my needs dictate. Prior to that I was not doing any consistent PT. There is no question that the Vest allows for the independent ability to increase patient compliance. While I also rely on exercise, I firmly believe that my diligence to the Vest has been key in keeping me 'inactive' from the transplant waiting list and from the need of IV antibiotics for several years. Despite that testimony, I also know of several people for whom the Vest has been ineffective. The website for the Vest company is (simply enough):http://www.thevest.com/Good luck,John.g 40 w/cf
Mockingbird
New member
Hello, Anonymous. I agree with Emily; try the vest out before you buy. I tried it and it did absolutely nothing for me. The stupid clinic kept trying to push it on me, but I told them absolutely NO! =-) I had to be forceful, they kept asking, "Are you sure?" I guess why they kept asking was because it has worked for people, but like everything else, one size does not fit all.Jarod 22 with cf
Emily, I have read a lot of your posts and know that you are away at college. I always just assumed you used the vest since you are not at home. How do you get your therapy done or who does it for you? Although my daughter is much younger I wonder about her going to girl guide camp or a friends sleep overs. It seems like a lot to ask another adult, who would be in charge, to do her therapy. I also don't want to be one of those mothers that is always around, because I feel that I have to be there to do her therapy. I want her to be able to grow up as an independant person, but I am not sure I would want to invest in the vest either. How did you deal with these types of situations growing up?Thanks,
AbsintheSorrow
New member
Well if I feel I really need it, I can go to the Health Center at school... and I have a friend who's a bio major who understands the CF... but really I get most of it done by going to the gym and working out the best I can. It gets me coughing, and does the job on its own. <img src="i/expressions/rose.gif" border="0">
NoDayButToday
New member
To the wondering mother
id you ever hear about the flutter valve? It's what I use on sleepovers, at camp, and even at home a bit. Its a small (a bit bigger than an inhaler) device that you blow into and the reverberations (sp?) from a ball insde reflect into your chest and shake it, much like the vest or PT would. It's great, since you don't always have another set of hands to do PT, and the vest is a bit cumbersome. I even like the flutter more, since I am a deep cougher, I find the breathing you focus on while 'fluttering' makes me cough better. But if you have insurance that will cover the vest, it's probably a good idea to invest in that too. I use them in conjunction. PS: If you do get the vest, and your daughter is not a fan, don't worry- I hated the vest when I was younger and had a smaller frame- it shook me so much. But a year or two I tried it again and now like it a lot more. Hope this helps
id you ever hear about the flutter valve? It's what I use on sleepovers, at camp, and even at home a bit. Its a small (a bit bigger than an inhaler) device that you blow into and the reverberations (sp?) from a ball insde reflect into your chest and shake it, much like the vest or PT would. It's great, since you don't always have another set of hands to do PT, and the vest is a bit cumbersome. I even like the flutter more, since I am a deep cougher, I find the breathing you focus on while 'fluttering' makes me cough better. But if you have insurance that will cover the vest, it's probably a good idea to invest in that too. I use them in conjunction. PS: If you do get the vest, and your daughter is not a fan, don't worry- I hated the vest when I was younger and had a smaller frame- it shook me so much. But a year or two I tried it again and now like it a lot more. Hope this helpsHi guys, I LOVE the vest. It has made a huge difference for me. Not only can I do it myself, it does a much better job of making me cough and clearing the mucus. For my whole life my parents did chest PT every day, I hated it! I started using the vest in 1995 and have loved it ever since. I don't see how some of you guys get away without doing "therapy" (as I have always called it) every day. That must be great! Even if I exercise I don't get that much up. I do the vest late in the afternoon (like now) while using my nebulizers and it's actually kind of relaxing, I can just veg out and get lost in a book. I know lots of people out there that don't like it, it's too tight and constrictive, etc. My insurance companies (and I've had several over the years) have never covered it, but the vest company has let me use it for the past 9 years with no payment from anyone. They have and are trying to get my insurance companies to cover it, but so far no success. You might want to have your daughter try it out before getting it, just in case she's one that doesn't like it.Martha 29, CF
Just out of curiosity - how many of you don't get any coughs up at all from the Vest? I've had the Vest for a number of years, and regardless of what speed or pressure I've put it on - it has never ever brought up a single cough or caused even a tickle. I'm just curious if I'm doing something wrong (though when they've set up the Vest for me during a hospital stay and monitored me - I still didn't bring anything up). Also - the flutter doesn't do anything for me either - anyone else have this problem?Also on that note - I have requested good old fashioned chest PT to be performed while I'm in the hospital - and they just hook me up to the Vest and won't actually do the old fashioned pouding with their hands (I think out of laziness) - have any of you, that don't like the Vest, had your hospital comply with your request for chest PT the old fashioned way?I get my daily chest PT by using my IPV 2-3 times a day, and I also use a vibrating back massager which works better for me as I can really add pressure and direct it to places where I think I need it, I also perform PT on myself - and my husband gets those spots that I can't, also - my family and friends of my parents (who are nurses) meet me every afternoon to do a good long one hour session. For those parents who are worried about their kids being able to be independent and not have to rely on someone to do chest PT on them, but don't want or can't get the Vest, I recommend the IPV as I haven't needed extra PT for the past 10 years since I started using it. I just started including chest PT in addition to the IPV this year as I'm now on disability so I don't have to worry about work getting in the way, and it's helping bring more stuff up (I've been pretty healthy and stable for the past 10 years and we found that the physical chest PT didn't clear anything extra out so the IPV was sufficient).Piperpmcp@comcast.net
Hi thereMy boyfriend is 34 with CF and we live in London. I looked into it last year. there is a UK reprenstative on the website and I emailed them. The cost, however, is phenomenal and we decided at the time that we culdn't afford it. My boyfriend is in hospital at the mo ad his stats dropped to 78 without the oxygen. I feel scared that he might be deteriorating and maybe we should consider the vest again.
AbsintheSorrow
New member
Piper, my hospital is very good about it when I stay. They ask me what I use at home, I tell them just hands beating on my back, so they send in a respiratory therapist 3 times a day to do it for me, no questions asked.
E
EmilysFriend
Guest
Hello All, I can't believe it's taken me this long to finally get around to joining your forum... At any rate, allow me to introduce myself as Emily's "bio-major college friend," Katie. Although our relationship has since moved well beyond anything related to her illness, if we're honest about it (and Emily would have it NO other way), her CF was the reason she and I began talking to each other in the first place. To make a long story short, Emily was my across-the-hall neighbor during my first semester at Northeastern. I found out about Emily's CF because she would keep her open whenever she did her meds at night. Her honesty and openness inspires me each and every day... Anyway (I guess this isn't so short afterall...lol), as I soon found out, I was totally clueless about Cystic Fibrosis when she first told me that she had it. That is until I sat through a lecture in my Bio 1 class that was devoted entirely to CF and what it means to have it. I was nearly in tears when I got back to my dorm that evening, and I knocked on her door to exclaim: "Emily, I didn't know you were going to DIE!" The conversation that followed, to my recollection, was about 2 or 3 hours, and in that time I was able to discover what an amazing, strong person Emily is. She is perhaps one of the most understanding people I've ever met, and my only regret about our friendship is that it took her CF to bring us together. On a more specific note... Emily, I hope you realize that you can call me at three in the morning when you need therapy, and I'll gladly come over and--er--beat on you for as long as you want/need. LOL That sounds kinda harsh, but I mean in the most sincere way possible. I never offered before because I wasn't sure how you felt about the whole thing, but you know I'd think nothing of helping you with the therapy. I wish everyone in this community the best of luck. My plan is to stay fairly active in this forum (at least where it's appropriate for me to comment). I have an interest in learning about CF, both as a concerned friend and as an aspiring healthcare worker, and I can't think of a better way to educate myself than to talk with the people who understand it the best.~Katie
AbsintheSorrow
New member
HEEHEE!! I have a fanclub now. <img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/rose.gif" border="0">
The Vest also is not available in New Zealand either.I investigated it and it was going to cost us a small fortune to get it and ship to NZ.So it will just have to be the good old manual PT for the time being.I also wonder why my son doesn't cough very much when he has his physio?I wondered if I wasn't doing it quite hard enough?Rebekah Mother to Matt 13mths w/CF
Hi everyone. I've used the Vest for several years, and I too don't really "cough" from using it. When i go into the hospital i always have Respiratory therapists do "hands" because my Doctor doesn't like any other method. "Hands" usually gets me really sore and then I have to have them skip areas for awhile because it starts hurting. I've tried the IPV in one of the other hispitals i was in and liked it, i may have to check into getting it.Caren