frustrations of the vest

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Captain Jack
New Member


Date Joined May 2005
Total Posts : 11
   Posted 10/16/2005 1:10 PM (GMT -7)   
I was recently just hanging out with my friend for the greater part of the day, and around 1:00 she happened to be catching up on her morning therapy. Recent tradition has been that I'm often around for nightly therapy, during which we talk for a while and she usually falls asleep with her vest on... never ceases to amaze me a bit... and in the mornings she's doing her therapy almost without waking up... But the other day was something new, and I realized that doing all this stuff, these things she makes jokes about and passes off as no big deal, really do matter to her. She hates the pounding and the noise, how few people understand what she says and she fails to hear them in return. I saw an abnormally mad and frustrated side of her, because of me, because I couldn't understand her, nor could she understand me, and yet I kept trying to talk to her. I hate it when I have to ask her to repeat things because her voice is too garbled from the pounding of compressed air. I don't mind repeating things, I don't mind the frustration of trying to talk to her like that. But I realized that sometimes, she minds alot. I realized she hates it, and that I only know half of what's going on. I don't know what it feels like to wear that thing for more than a few minutes, I don't know what it's like to sit around on a nebulizer for a half hour first, and I certainly can't imagine what it's like to have the soreness of that things shaking her breasts as it does. She hates that she spends more than two hours a day attached to machines, thoughts interrupted by their loud noises, concentration on any task broken by the things she must do. The other night, she hated me trying to talk to her. She hated that I didn't have any idea how frustrating all of that is for her, she hated that I kept wanting to talk to her and she was too frustrated to try. She hated that I didn't realize that, she hated that I kept just wanting to look past it all. Because I don't know.

I got to thinking about this and noticed that no-one's ever brought up anything quite like this here, at least not that I've noticed. Has anyone else been like either of us? Has anyone felt so utterly frustrated at going through all of that? Has anyone felt so helpless to understand their friends or family members' frustrations with CF?

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 10/16/2005 3:11 PM (GMT -7)   
Hi Captain Jack, it's good to see you!

Perhaps, you may get your answer from posting here from some other adults with CF. I cannot offer anything here but my shoulder to lean on!.

My twins (9 yrs) get frustrated with one another so much that it would be hard to help or know how to help anyone with these frustrations.  I know with the vest, it hurts their bellies with the constant pounding and vigorous movement, they do get frustrated over that.


Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.


Katie S
New Member


Date Joined Oct 2005
Total Posts : 4
   Posted 10/19/2005 11:29 AM (GMT -7)   
Hi Captain Jack, I am 28 (almost 29) and I have C.F. I am also a mother of three beautiful children (non of them have C.F) I agree with how difficult and frusterating it is to be hooked up to machines for so many hours a day. My family is off playing around or doing things without me and all I want to do is rip that vest off and go play too. The vest grinds my ribs, itches and tickles from the vibrating and it is difficult to talk with it. Sometimes I try to read while doing it but once you get the the higher frequencies the book shakes to much. As much as I hate the vest I need it. My lung functions are down to 30% and if I miss those treatments I really feel it. Then I don't feel up to doing things with my family and can't keep up with all the fun. It is worth it in the end though it is hard. I just try to make the most out of it. I do my evening treatments after the children are in bed and I normally watch t.v. or read. It is my quiet time. Durring the day though I sing with my children. My kids love how silly my voice sounds on that vest. So we all sing along to Itsy Bitsy Spider and Twinkle Little Star. We just work around it and try to turn it into something positive.

For your friend i would suggest you talk to her. Let her tell you how she feels and see if there is something else you can do besides talk when she is doing her vest.

alywymark
New Member


Date Joined Nov 2005
Total Posts : 2
   Posted 11/3/2005 9:41 AM (GMT -7)   
hey can i ask a stupid question that i should actually know but what is a vest i have never heard of one but im sure i should have as i have cf???? confusing

Captain Jack
New Member


Date Joined May 2005
Total Posts : 11
   Posted 11/3/2005 6:07 PM (GMT -7)   
I'm told not everyone uses the vest. For one, the percussion therapy it performs was initially done by hand. I've seen Katie's mother do it to her once and she asked if I would learn to do it. Also, Katie once told me she thought there where some cases of CF that didn't require that therapy to the repiratory system and for the most part only had to deal with the digestive problems.

Thanks to all of you for your comments. There wasn't any real problem between Katie and I, we did talk about it alot later, but it worried me that I had never seen her so frustrated with it before. Since then we've taken to using drawing and writing notes on a whiteboard during therapy... it can be pretty funny sometimes.

Also I'd just want to say about the above comment that I felt like being as helpful as I can, but all I know is from talking to Katie and consulting google, so yeah...
~Jack
best friend of Kat, 16 w/ CF


Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 11/4/2005 7:30 AM (GMT -7)   
Hi Alywymark,

The vest is a machine that helps to do your CPT for you. I am surprised that your doc has not recommended one for you.

Oh yea....it's never stupid to ask a question if you don't know an answer to begin with.

Welcome to HW...glad to hae you!
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.


Tayra
Regular Member


Date Joined Nov 2005
Total Posts : 40
   Posted 11/19/2005 8:19 PM (GMT -7)   
alywymark you can go google for "The Vest" (in quotes) and it should pop up right away for you. It is a physiotherapy device that you put on - looks like a flak vest with two rubber ports on it. Hoses connect to it and to a compressor. It vibrates pretty crazily but loosens things up in the lungs for easy removal.

I have a model 103 vest. I get frustrated that its available as a model 104 now and half the size, but I hear its just as heavy so no point in upgrading - though when I am sick it is difficult to manage.

Anyway back to the original post by Captain Jack - My family is very good about my vest, thankfully I'm only on it for 30 minutes three times a day. During these times I have close at hand a computer, a tv and a playstation so I try to keep myself busy with other things to take my mind off of it. Sometimes I have difficulties on my last frequency and cut it short (shhh dont tell anyone) - but all in all its just a normal fact of life. I'm very thankful to have the vest, prior to it my mom was doing manual CPT. It was damaging her wrists (repetative stress injury) and once that started hurting her - which I didn't like one bit - her physio got lighter and lighter and I got sicker and sicker. I tried a few alternatives but the Vest was the only thing that was able to meet my needs so - I consider it the lesser of the evils. Gotta keep living because the alternative isn't cool.

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 11/23/2005 6:30 AM (GMT -7)   
Tayra,

My boys complained very heavily with the vest hurting their bellies.....so, we stopped using it. Now that they are older, perhaps, we can start using it again.

At what intervals, do you se your device at? starting and then finishing? I know, its really up to the CF care team, but, I am gonna ask you what you do.
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.


LittleBird
Regular Member


Date Joined Nov 2005
Total Posts : 36
   Posted 11/24/2005 1:16 AM (GMT -7)   
I hated the Vest, I used it for 4 years, the vest wasn't invented untill I was 10ish. it was loud, it made me itch, I couldn't hear things, I couldn't talk to people, and I was shaking so much I couldn't even read a book. I swiched to IPV which is relatively new, and I don't think it is used everywhere. it works far better than the vest for me, though I am still attached to macheens, and I still can't talk. it takes less time.
I think there is only a sertin thresh hold you can take of your disease, at some poing you explod. you just can't take it anymore, it builds up insid untill you just have to let it out, for me I either start yelling at somone for no aparent resion, or bread down in tears. this usually happins just before I go into the hospital. this is probibly why your friend was so upset.
to give you a different prespective however, I belive it is harder to watch somone suffer from CF then to actually have it, at least emotionaly. I have had big problems with CF all my life, I don't know any different, but my family and friends know how life should be, and see me leading such a different existance, it must be hard for them. I find myself not telling them anymore if I am haveing a day that my chest hurts, I no longer cry in front of them. I have many friends with CF, and I am more likely to cry for them than for myself.

Tayra
Regular Member


Date Joined Nov 2005
Total Posts : 40
   Posted 11/26/2005 1:20 AM (GMT -7)   
Twinstride, if it rubbed their bellies than their vests didnt fit properly. If it is just that it is too low on them, they should look at getting the other model of vest (same compressor but different half-height vest). I use mine on three frequencies 10-12-14. 10mins per frequency and pressure 5-6. I do it three times per day (30 mins of treatment). 90 mins per day. But I'm still breathing and my lung function is very good.



Littlebird, I have had my vest for 4 years now and still think of it as a blessing. I had to fight for it, went up against my provincial government. I am the first one in BC to get one paid for and - as of writing this - the only one. I have sent my documentation around to other cystics in the hope that they can duplicate the process and get a vest themselves.

Do I get frustrated with having CF? YES!!! Especially when they're poking me for the 50th time in 4 days. Yes it has actually happened, not exagurating.
Do I get frustrated with having the vest? Yup sometimes I get really PO'd that I have to stop everything and do my time. People who smoke realy make me mad because they're wrecking perfectly good lungs. I figure I should just trade with em and let them see what's in store. But thats another topic entirely :)

I also have my breakdowns - just crying, no prozzak required - I wonder about stopping all the med completely but thats not an option. Life isn't great but the alternative isn't all roses either.

I do take St. Johns Wort (natural herbal mood-helper, safe to take with my meds). It keeps me from going CRAZY *lol* - Crazier? LOL :)

I have the benefit of living next to a girl with Cerebral Palsy. She is sharp as a tack mentally but physically cant even get out of bed. She is a constant reminder for me that there is always someone somewhere who is going through far worse than I am. Even when I'm poked 50 times, I know somone just got poked 51. Keeps me sane I think. Till there's a cure we just gotta keep dealing with what we've got. Just keep smiling!

Post Edited (Tayra) : 11/26/2005 1:23:00 AM (GMT-7)


LittleBird
Regular Member


Date Joined Nov 2005
Total Posts : 36
   Posted 11/27/2005 12:11 AM (GMT -7)   
I agree Tayra, as bad as things get, there is always somone worse.
I didn't mean to give the wrong impression in my comment, as much as I hated the vest, it was a savior for me. the treatments I did before the vest never seemed to work. the vest was the first thing I tryed that seemed to make a differince, I did my treatments twice a day every day, never missed one, and still don't. I always feel better aftertreatments, and when I am done, I can go live a happy life. nevertheless, when I got my IPV, I couldn't be happyer, for me it workes even better, and without some of the frustrations of the vest.

Lauren Michelle
New Member


Date Joined Jan 2006
Total Posts : 19
   Posted 1/6/2006 3:38 PM (GMT -7)   

I hate the vest.  What frequency does she use?  I use 10, 15, and 20.  My belly doesnt hurt, as twinstride? posted, but its jsut terrible.  I try to read or something while I do it, but I also have to do Albuterol and TOBI and Pulmozyme, and when I put my head down to read, not only do my hands shake, but my nebs drip (from the condensation) all over my book.  and playing games is hard, cuz I cant talk through my neb, so im usuallystuk watching TV.  Before this year however,  i had no laptop cool  lol.  now Im on my laptop while im on my vest (usually this forum lol)

 

 


Lauren M Kelly
 
Proverbs 3:5-6
Trust in the Lord with ALL of your heart and rely not on yourself, in all times, acknowledge him. And he will make your paths straight.
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