Re: nebs. S/vest etc ....

[Guest guest]

hi Suzanne, Ann

(and of course any interested ... )

am curious how you can do anything involving reading while on

SmartVest - esp if on higher settings - I find the vibration means I

can't read anything - so it's just lie-down time. I tried doing nebs

(have Pari neb, with mouthpiece, not face mask) and found it splashed

onto my glasses (all so much fun isn't it!) so I now do nebs, CAN

read, do sudoku, even crochet, then S/vest after or later in day, esp

in hotter weather I wait until it's cooler. NO chance wearing a

sweater under it!

I find (am about 92 lbs) my best settings are between 12-16 hz, and

about 40-60% pressure. If really unwell, headachey, I reduce these

down. I also find if I lie semi-prone, with cushion under front of

jacket it doesn't vibrate on stomach, more on my back and sides where

I want it, and doesn't aggravate the reflux. I've actually dozed off

if have my programme where I finish off on a 12, is quite relaxing!

Like you mentioned i find if I miss doing the S/vest - even more so

if more than that, up comes very dirty dark stuff again ....

All a learning curve,

joy h

[Guest guest]

Hi Joy,

When I first started with the vest I actually had to keep my eyes closed because it made me motion sick. My setting is 14. Then I tried saying prayers and meditating. Now I sit close to the TV and turn up the volume and watch it. I live alone so only the 2 cats and 2 dogs need to deal with the noise.

I couldn't read but then I get sick if I read in a car.

The vest has really helped me. I thank this group for mentioning it and letting me know that it was better to get one before I got worse.

Cindi W.

To: bronchiectasis Sent: Thu, July 21, 2011 8:16:44 PMSubject: Re: nebs. S/vest etc ....

hi Suzanne, Ann(and of course any interested ... )am curious how you can do anything involving reading while on SmartVest - esp if on higher settings - I find the vibration means I can't read anything - so it's just lie-down time. I tried doing nebs (have Pari neb, with mouthpiece, not face mask) and found it splashed onto my glasses (all so much fun isn't it!) so I now do nebs, CAN read, do sudoku, even crochet, then S/vest after or later in day, esp in hotter weather I wait until it's cooler. NO chance wearing a sweater under it!I find (am about 92 lbs) my best settings are between 12-16 hz, and about 40-60% pressure. If really unwell, headachey, I reduce these down. I also find if I lie semi-prone, with cushion under front of jacket it doesn't vibrate on stomach, more on my back and sides where I want it, and doesn't aggravate the reflux. I've actually dozed off if have my programme

where I finish off on a 12, is quite relaxing!Like you mentioned i find if I miss doing the S/vest - even more so if more than that, up comes very dirty dark stuff again ....All a learning curve,joy h

[Guest guest]

I realize I've only had the vest about three weeks now and that I should give it time because I hear others have results but I'm becoming disappointed that nothing substantial is coming up. I will pursue the shake 'em up though. By the third cycle, my brain and eyes and ears and nose and throat are getting quite a work out.

The gastro doc called a few days ago and said through 96 hours on the Bravo pH monitor last week it detected very little reflux. What?? I detected the normal belching and burping and heartburn from mid chest to back with each mea. She's had me on Nexium twice a day for 6-7 years. She also saw no problems along the esophagus during the scope. I'm having an esophageal manometry next Monday to gauge spasms, etc. And also ct scan of abdomen and pelvis on Wednesday. I get a bulge under lower right ribs once in awhile when I'm

bent over and coughing. Hernia? Remains tender for a few days.

So maybe something other than reflux adds to coughing episodes?

To: bronchiectasis Sent: Friday, July 22, 2011 8:17 AMSubject: Re: nebs. S/vest etc ....

Hi Joy,

When I first started with the vest I actually had to keep my eyes closed because it made me motion sick. My setting is 14. Then I tried saying prayers and meditating. Now I sit close to the TV and turn up the volume and watch it. I live alone so only the 2 cats and 2 dogs need to deal with the noise.

I couldn't read but then I get sick if I read in a car.

The vest has really helped me. I thank this group for mentioning it and letting me know that it was better to get one before I got worse.

Cindi W.

To: bronchiectasis Sent: Thu, July 21, 2011 8:16:44 PMSubject: Re: nebs. S/vest etc ....

hi Suzanne, Ann(and of course any interested ... )am curious how you can do anything involving reading while on SmartVest - esp if on higher settings - I find the vibration means I can't read anything - so it's just lie-down time. I tried doing nebs (have Pari neb, with mouthpiece, not face mask) and found it splashed onto my glasses (all so much fun isn't it!) so I now do nebs, CAN read, do sudoku, even crochet, then S/vest after or later in day, esp in hotter weather I wait until it's cooler. NO chance wearing a

sweater under it!I find (am about 92 lbs) my best settings are between 12-16 hz, and about 40-60% pressure. If really unwell, headachey, I reduce these down. I also find if I lie semi-prone, with cushion under front of jacket it doesn't vibrate on stomach, more on my back and sides where I want it, and doesn't aggravate the reflux. I've actually dozed off if have my programme where I finish off on a 12, is quite relaxing!Like you mentioned i find if I miss doing the S/vest - even more so if more than that, up comes very dirty dark stuff again ....All a learning curve,joy h

[Guest guest]



everything adds to it.

Re: nebs. S/vest etc ....

hi Suzanne, Ann(and of course any interested ... )am curious how you can do anything involving reading while on SmartVest - esp if on higher settings - I find the vibration means I can't read anything - so it's just lie-down time. I tried doing nebs (have Pari neb, with mouthpiece, not face mask) and found it splashed onto my glasses (all so much fun isn't it!) so I now do nebs, CAN read, do sudoku, even crochet, then S/vest after or later in day, esp in hotter weather I wait until it's cooler. NO chance wearing a sweater under it!I find (am about 92 lbs) my best settings are between 12-16 hz, and about 40-60% pressure. If really unwell, headachey, I reduce these down. I also find if I lie semi-prone, with cushion under front of jacket it doesn't vibrate on stomach, more on my back and sides where I want it, and doesn't aggravate the reflux. I've actually dozed off if have my programme where I finish off on a 12, is quite relaxing!Like you mentioned i find if I miss doing the S/vest - even more so if more than that, up comes very dirty dark stuff again ....All a learning curve,joy h

No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1390 / Virus Database: 1518/3781 - Release Date: 07/22/11

[Guest guest]

Cindi and Joan:I read your passages and really feel badly for you both. I also wonder, as Iread this, about my son. He was 7 when he got his vest, almost 2 yearsago. He complained, but we persisted. Now I feel SO badly aboutnot giving in, even once. He too, Cindi has the TV up loud, when he doeshis vest, We have packed him away in the spare bedroom. Now Iwonder if it REALLY WAS too much for him!!I want to cry.... Although he got GREAT news @ Mayo Clinicin Rochester, Mn in May on his 9th birthday. What away to celebrate your golden birthday, on the 9thof May, alone at Mayo Clinic with your mom.Joan, Sam has the vest set @ 12.

I cannot tellyou much more about it, he is SO good abouttaking care of it all on his own! I wonderhow much my little boy really understandsabout what is happening to him. I knowhe feels like it's not fair, I feel that wayfor ALL OF YOU! I know that we are SOlucky that we found this terrible diseasein our son's lungs, at a very early stage.He is nearly cured.Maybe that s/b the take away from allof this. The Vest IS the reason that mylittle Sammy is almost CURED. I don'tknow how advanced your disease is, Joan,but I hope that my son's story offers yousome hope.... eSubject: Re: nebs. S/vest etc ....To: bronchiectasis Date: Friday, July 22, 2011, 3:35 PM



everything adds to it.

Re: nebs. S/vest etc ....

hi Suzanne, Ann(and of course any interested ... )am curious how you can do anything involving reading while on SmartVest - esp if on higher settings - I find the vibration means I can't read anything - so it's just lie-down time. I tried doing nebs (have Pari neb, with mouthpiece, not face mask) and found it splashed onto my glasses (all so much fun isn't it!) so I now do nebs, CAN read, do sudoku, even crochet, then S/vest after or later in day, esp in hotter weather I wait until it's cooler. NO chance wearing a sweater under it!I find (am about 92 lbs) my best settings are between 12-16 hz, and about 40-60% pressure. If really unwell, headachey, I reduce these down. I also find if I lie semi-prone, with cushion under front of jacket it doesn't vibrate on stomach, more on my back and sides where I want it, and doesn't aggravate the reflux. I've actually dozed off if have my programme where I finish off on a 12, is quite relaxing!Like you mentioned i find if I miss doing the S/vest - even more so if more than that, up comes very dirty dark stuff again ....All a learning curve,joy h

No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1390 / Virus Database: 1518/3781 - Release Date: 07/22/11

[Guest guest]

Hi e,

You have done the right thing for your child. It took an adjustment period with my vest, but now it is no big deal and really helps minimize my infections. You are a wonderful mother because you have the courage to do the things your child needs in order to give him a better quality of life.

I told the group for the first time I had a student this year with the disease. He had MSV if I am correct, at three which is a viral respritory illness that injured his lungs. He has been healthier the last two years and plays hockey. He goes to a doctor who specializes in cystic fibrosis and they label him with that disease in order to get the insurance to pay for all the medications.

Another student I had also had the same virus at three and I truly think he will be diagnosed one day with this disease. He is sick frequently with respiratory illness and has severe asthma

I have talked with his mom about checking out further why he is so frequently ill for such long periods of time. Teachers are not allowed to suggest going to a doctor. We are not medical people and suggesting it would also make our district liable. However, I can say I am concerned and give her a hint. Silly, all the legal repercussions that keep us from just saying what we feel is in the best interest of the child. I am hoping she follows through with a plumonologist.

Keep doing all that you can to help your child have a better quality of life.

Cindi W.

To: bronchiectasis Sent: Fri, July 22, 2011 5:07:03 PMSubject: Re: nebs. S/vest etc ....

Cindi and Joan:

I read your passages and really feel badly for you both. I also wonder, as I

read this, about my son. He was 7 when he got his vest, almost 2 years

ago. He complained, but we persisted. Now I feel SO badly about

not giving in, even once. He too, Cindi has the TV up loud, when he does

his vest, We have packed him away in the spare bedroom. Now I

wonder if it REALLY WAS too much for him!!

I want to cry....

Although he got GREAT news @ Mayo Clinic

in Rochester, Mn in May on his 9th birthday. What a

way to celebrate your golden birthday, on the 9th

of May, alone at Mayo Clinic with your mom.

Joan, Sam has the vest set @ 12. I cannot tell

you much more about it, he is SO good about

taking care of it all on his own! I wonder

how much my little boy really understands

about what is happening to him. I know

he feels like it's not fair, I feel that way

for ALL OF YOU! I know that we are SO

lucky that we found this terrible disease

in our son's lungs, at a very early stage.

He is nearly cured.

Maybe that s/b the take away from all

of this. The Vest IS the reason that my

little Sammy is almost CURED. I don't

know how advanced your disease is, Joan,

but I hope that my son's story offers you

some hope.... e

Subject: Re: nebs. S/vest etc ....To: bronchiectasis Date: Friday, July 22, 2011, 3:35 PM



everything adds to it.

Re: nebs. S/vest etc ....

hi Suzanne, Ann(and of course any interested ... )am curious how you can do anything involving reading while on SmartVest - esp if on higher settings - I find the vibration means I can't read anything - so it's just lie-down time. I tried doing nebs (have Pari neb, with mouthpiece, not face mask) and found it splashed onto my glasses (all so much fun isn't it!) so I now do nebs, CAN read, do sudoku, even crochet, then S/vest after or later in day, esp in hotter weather I wait until it's cooler. NO chance wearing a sweater under it!I find (am about 92 lbs) my best settings are between 12-16 hz, and about 40-60% pressure. If really unwell, headachey, I reduce these down. I also find if I lie semi-prone, with cushion under front of jacket it doesn't vibrate on stomach, more on my back and sides where I want it, and doesn't aggravate the reflux. I've actually dozed off if have my programme where I

finish off on a 12, is quite relaxing!Like you mentioned i find if I miss doing the S/vest - even more so if more than that, up comes very dirty dark stuff again ....All a learning curve,joy h

No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1390 / Virus Database: 1518/3781 - Release Date: 07/22/11

[Guest guest]

hi

did you try lower settings, not having the pressure too high. I find

holding a cushion to my stomach (front of chest, not abdomen) means

less vibration on the gut hence less sense of reflux. Then found

lying semi-prone with cushion under my stomach - anyway to reduce

vibration at front and increase it across the back and sides helps.

I have 3 different programmed settings so can just choose whichever

suits at the time.

I was told the cilia move at a rate of 12-16 hz - so I generally keep

within those. Maybe a very large, perhaps overweight person may get

benefit from the higher settings? Don't know but even 16 I now only

do 5 mins max at any one time.

just trial and getting it right!

cheers,

joy

[Guest guest]

Ann,

puzzling ... a lot of coughing fits can be caused by post nasal

drip - which was my bugbear until had FESS, and finally coughed out

some surgical dressing!! Since then, rarely have the coughing fits

have had all my life ( & created havoc with my spine). PND I keep

under control with nasal flush every evening, after last meal of day.

re S/vest (or whichever you use) - I know some people use it twice or

more per day. I find one 20 or 30 minutes session enough. Sometimes

I get a lot up, not always, but it DOES seem to prevent old stuff

staying stuck down there, happily breeding away. So even if it's

only a couple of dirty looking small plugs - which is a huge infx

source - I'm happy with that. Experiment with settings, find what is

comfortable and manageable for you, gradually try other settings and

see what results .... You'll better results if you're relaxed and

feel positive rather than stressed, so take it gently, I'm sure it'll

find its' own level for you.

I guess there's also this comparison thing - I was in a really bad

way: I have several Psa and a few others as well, cysts and

fibrosis, have had bronch for around 50 years or so at least ....

most of that time very poorly managed, doctors often not even aware

of what bronch was.

cheers,

joy

[Guest guest]

hi e,

as a child I went thru so much time in hospital too ... but mostly

for cleft palate as well as being sick ... had loads of chest

physio, hated it of course, but family never did it for me at home,

so always getting sick.

Now, 5-6 decades later there's certainly no cure for me, but the Vest

means that I can remove infected gunk that is almost impossible to

get out & thereby keep infx rate down. Even IV meds only partially

work. Having lived all my life with constant underlying infx I think

my body is kind of used to it, but I do know that if it's kept down,

my quality goes up proportionally.

So cure or no - it can keep the infx rate down, and that prevents

further damage to lung tissue etc etc. Gotta be better than doing

nothing!!?

cheers all,

joy h

[Guest guest]

I can read, work on the computer, and use my nebulizer with a face mask. I have a The Vest so settings may be different - I do mine at 20hz and 8 pressure. I started much lower but got poor results so my pulmonologist suggested I play around with the settings until I found what worked.Is it "pleasant"? NO! It's annoying in.the way a jackhammer outside ones window is - not painful, but. One is certainly glad when it's over. The best way to tolerate it is distraction. When I'm home, it's set up next to my computer and that makes the time go by more quickly. This past month, I've been on vacation and I read while I was doing it - a bit jumpy but doable.Just give it time...Sent from my iPadSuzanne R Brown

hi Suzanne, Ann

(and of course any interested ... )

am curious how you can do anything involving reading while on

SmartVest - esp if on higher settings - I find the vibration means I

can't read anything - so it's just lie-down time. I tried doing nebs

(have Pari neb, with mouthpiece, not face mask) and found it splashed

onto my glasses (all so much fun isn't it!) so I now do nebs, CAN

read, do sudoku, even crochet, then S/vest after or later in day, esp

in hotter weather I wait until it's cooler. NO chance wearing a

sweater under it!

I find (am about 92 lbs) my best settings are between 12-16 hz, and

about 40-60% pressure. If really unwell, headachey, I reduce these

down. I also find if I lie semi-prone, with cushion under front of

jacket it doesn't vibrate on stomach, more on my back and sides where

I want it, and doesn't aggravate the reflux. I've actually dozed off

if have my programme where I finish off on a 12, is quite relaxing!

Like you mentioned i find if I miss doing the S/vest - even more so

if more than that, up comes very dirty dark stuff again ....

All a learning curve,

joy h

[Guest guest]

Hi, all. You are braver than I.

My doctor will be notifying Hill-Rom to remove the Vest stuff from my apartment because I just can't stand using it. Even though I watched good ol' TV while being shaken (not stirred), it was not enough to get me to appreciate the process. I guess I found it depressing, couldn't wait for it to be over. The ends did not justify the means. I pictured myself as a little old lady using the Vest, and that didn't work for me.

I am presently on nebulized Albuterol; I'll be adding nebulized Mucomyst to my treatment. And I'm the one taking the 3 abx on a monthly rotation.

I am conflicted by my decision but so happy not to be strapping that thing on again.

Love to all, D.

To: bronchiectasis From: srb5814@...Date: Sat, 23 Jul 2011 22:31:07 -0400Subject: Re: nebs. S/vest etc ....

I can read, work on the computer, and use my nebulizer with a face mask. I have a The Vest so settings may be different - I do mine at 20hz and 8 pressure. I started much lower but got poor results so my pulmonologist suggested I play around with the settings until I found what worked.

Is it "pleasant"? NO! It's annoying in.the way a jackhammer outside ones window is - not painful, but. One is certainly glad when it's over. The best way to tolerate it is distraction. When I'm home, it's set up next to my computer and that makes the time go by more quickly. This past month, I've been on vacation and I read while I was doing it - a bit jumpy but doable.

Just give it time...Sent from my iPad

Suzanne R Brown

hi Suzanne, Ann(and of course any interested ... )am curious how you can do anything involving reading while on SmartVest - esp if on higher settings - I find the vibration means I can't read anything - so it's just lie-down time. I tried doing nebs (have Pari neb, with mouthpiece, not face mask) and found it splashed onto my glasses (all so much fun isn't it!) so I now do nebs, CAN read, do sudoku, even crochet, then S/vest after or later in day, esp in hotter weather I wait until it's cooler. NO chance wearing a sweater under it!I find (am about 92 lbs) my best settings are between 12-16 hz, and about 40-60% pressure. If really unwell, headachey, I reduce these down. I also find if I lie semi-prone, with cushion under front of jacket it doesn't vibrate on stomach, more on my back and sides where I want it, and doesn't aggravate the reflux. I've actually dozed off if have my programme where I finish off on a 12, is quite relaxing!Like you mentioned i find if I miss doing the S/vest - even more so if more than that, up comes very dirty dark stuff again ....All a learning curve,joy h

[Guest guest]

, it has nothing to do with bravery - I'm just VERY fond of

breathing!!! I have been traveling back home from vacation, and have not done

my Vest since Fri PM - ran out of time yesterday AM and just didn't have the

strength to set it all up in the motel last night. I DO notice more

non-productive coughing having missed it twice.

I can't wait for it to be over, either - it's annoying. And I AM an old lady of

almost 68! My daughter and grandchildren practically rolled on the floor

laughing when they saw me in that huge vest with a face mask on. I happen to

have round eyeglasses which I wear so I can either read or work on the computer,

and we all agreed that all I need is the helmet and a white neck scarf and I

look just like the Red Baron!

One of the things I've learned about aging is that one must learn humility as

there are so many things about old age and illness that are VERY humbling. I'm

trying very hard to accept this with grace - I don't always succeed.

Suzanne

[Guest guest]

Suzanne, you did not lose your sense of humor. Very funny re the Red Baron. Listen, don't start feeling old. I'm 81 and I think my success is that I refuse to think that I'm an old lady. You're still young, keep enjoying life as much as you can. But especially keep up your sense of humor.

To: bronchiectasis From: srb5814@...Date: Sun, 24 Jul 2011 20:08:17 -0400Subject: Re: nebs. S/vest etc ....

, it has nothing to do with bravery - I'm just VERY fond of breathing!!! I have been traveling back home from vacation, and have not done my Vest since Fri PM - ran out of time yesterday AM and just didn't have the strength to set it all up in the motel last night. I DO notice more non-productive coughing having missed it twice.I can't wait for it to be over, either - it's annoying. And I AM an old lady of almost 68! My daughter and grandchildren practically rolled on the floor laughing when they saw me in that huge vest with a face mask on. I happen to have round eyeglasses which I wear so I can either read or work on the computer, and we all agreed that all I need is the helmet and a white neck scarf and I look just like the Red Baron!One of the things I've learned about aging is that one must learn humility as there are so many things about old age and illness that are VERY humbling. I'm trying very hard to accept this with grace - I don't always succeed.Suzanne

[Guest guest]

Hi,

My children had the opposite reaction when they first saw my vest. They wanted to try it. Both have asthma and they both tried it and liked it. My daughter is tiny so we pulled in the straps and my son is bigger so we let them out. I feel the vest really helps me keep the infections down, although I am fighting one right now. I didn't have a culture, but was at a routine visit with pulmonologist and he felt from my sputum color and sound of my chest I needed to start on an antibiotic.

I am still trying to hold off by doubling the time in vest and using the flutter valve. I supposedly have a mild case of bronchiectasis, but the first few years I had it, I was on an antibiotic for almost the entire year, also antifungal medicine, and finally IV's for psuedomonas. The psuedomonas was drug resistant. I struggle to stay healthy even with all my supplements. I also always have a sinus infection.

I really don't want to go on the antibiotic because I was on one in May and I was trying to at least hold out for 6 months. I just feel afraid that if I take too much antibiotic I will become resistant and it won't be effective when I really need it.

That is why I like to hear that some of you have managed this disease for so long. It gives me hope. When I was first diagnosed, I felt like my life was just about over.

Thanks for being there everybody.

Cindi W.

I guess that is why the vest appeals to me as a way to lessen time on antibiotics.

To: bronchiectasis Sent: Sun, July 24, 2011 7:08:17 PMSubject: Re: nebs. S/vest etc ....

, it has nothing to do with bravery - I'm just VERY fond of breathing!!! I have been traveling back home from vacation, and have not done my Vest since Fri PM - ran out of time yesterday AM and just didn't have the strength to set it all up in the motel last night. I DO notice more non-productive coughing having missed it twice.I can't wait for it to be over, either - it's annoying. And I AM an old lady of almost 68! My daughter and grandchildren practically rolled on the floor laughing when they saw me in that huge vest with a face mask on. I happen to have round eyeglasses which I wear so I can either read or work on the computer, and we all agreed that all I need is the helmet and a white neck scarf and I look just like the Red Baron!One of the things I've learned about aging is that one must learn humility as there are so many things about old age and illness that are VERY humbling. I'm trying very hard to accept this

with grace - I don't always succeed.Suzanne

[Guest guest]

hi Suzanne,

I've not seen what the Hill-Rom Vest is like, I gather it can be

strapped around the body or worn with a jacket. The top settings of

20hz on the SmartVest even for me feel too strong - but I only wear a

thin cotton top underneath, more to keep the S/Vest clean than any

other reason. I think wearing glasses seems to accentuate the

shaking. I know what you mean tho about the jackhammer feeling - if

I have a headache I just have to give it a miss, but thankfully

that's not often.

Part of it is getting used to it and the other is finding own

settings. If I use higher hz settings I lower the pressure setting,

and vice versa...

joy h

[Guest guest]

hi

like medications - no point doing something that doesn't work or at

least make you feel better. Even tho we all have bronch it still

varies in its development, types of infx, how sick we get etc...

For me it's great cos having so many cysts and fibrotic lower lobes

lots mucus just does NOT shift even with nebs and exercise, then

plugs form ... then infx is quite bad within 48 hours. The S/Vest

got rid of the plugs I had initially, and now seems to prevent them

forming, so I can even get away with the occasional day not using it,

which I couldn't do at first.

the Mucomyst thins the mucous so any you have should be easier to

cough up, and that may be all that you need. Also, don't forget I've

had bronch for over somewhere around 40-50 years, so most people who

began to be unwell from bronch later in life won't have that same

lung damage.

cheers,

joy

[Guest guest]

hi Suzanne,

you sure don't come across as an old lady !! I actually had the

feeling you were sort of in your early 50s or even much younger!

But yes, just having this disease, plus the aging - puts us in some

funny situations. I have a '3rd nipple' (my portacath lump, just on

upper bra-line). And isn't it fun when it has to be used and putting

a dressing all over my boob!

joy h

[Guest guest]

hi Cindi

it is so true we have ups and downs, I'm sure all of us have days when it all seems toooo much...Can I give you a tip re using your vest double time - maybe have slightly gentler settings, less pressure, do 2 shorter sets rather than one long one ...  The extra shaking plus already having infx may cause a capillary to burst, sounds frightening but isn't usually serious.   I had a 5-hr bleed over Easter, it was after we got flooded, I'd had a bad cough as a result plus was on IV for infx already, so could have been any of those things, not my doing extra S/Vest - but I was doubling most days trying to clear very gunky lungs.  ...

[Guest guest]

My Hill-Rohm Vest is like a huge uninflated life jacket - shoulder to waist with

three large buckles in front. I guess I'm just a tough old bird but 20 hz works

for me and less did not. While I would love to weigh 10 lbs less, I'm not

overweight, but I do have a very large rib-cage. I wear whatever I'm wearing

that day when I do my treatment - sometimes a light-weight robe for the evening

one.

As I have said, when I first used the Vest a year ago, I couldn't even wear an

underwire bra when doing it. Now, nothing bothers me.

Psychologically, it was a HUGE step for me to decide to go along with my

doctor's recommendation to try it. I have had asthma since my mid-20's and I

made the decision at that time, that I was NEVER going to allow my disease to

define me. Most of my friends have no idea how serious my lung situation is,

and that's just fine with me. It is nice, however, to have the support of my

pulmonary rehab group - they totally " get it " and that is valuable.

When one has a chronic disease, one simply must accept it and learn how to best

cope with it with the least interference with ones daily life. I hate traveling

with my Vest - heavy and such a nuisance. Even in the car, it takes up a LOT of

room and when I go on my 4 week summer vacation, my SUV is already packed to the

gills. It's a nuisance having to set it up at night in the motel, and on the

way home, I did not - just missed Sat night and Sun AM. In fact, I missed Sat

AM as well as I was running late trying to get everything in order at the rental

house I was sharing with my daughter and her family, and not getting a lot of

assistance from SIL. I had a ferry to catch and that trumps EVERYTHING, Vest

included! I did notice more congestion and I " m getting it up now that I'm home,

but at least I now know that I can miss a couple of times and not end up in real

trouble.

My lung issues together with just plain getting older are a royal pain in the

butt, but I guess the alternative (being dead!) is NOT preferable!!!! I was

just thrilled that I was able to unload my car and over several hours haul it up

the two flights of stairs from my basement garage. Of course, if it had not

been raining hard, I could have parked in the driveway and come in the front

door and avoided one flight, but the gods were not with me Sun night! I was

just glad it was something I could still do if I had to do so. Small victories

over aging and health.....

Suzanne

[Guest guest]

Suzanne, your message gives me so much encouragement to stay with the Vest. You're right. Having a chronic disease is not the end. Not dealing with it and exploring new techniques can mean the end.

I recognize all of you who support this group as angels and so appreciate the advice you give me through your life experiences. God bless you all.

To: bronchiectasis Sent: Tuesday, July 26, 2011 7:21 AMSubject: Re: nebs. S/vest etc ....

My Hill-Rohm Vest is like a huge uninflated life jacket - shoulder to waist with three large buckles in front. I guess I'm just a tough old bird but 20 hz works for me and less did not. While I would love to weigh 10 lbs less, I'm not overweight, but I do have a very large rib-cage. I wear whatever I'm wearing that day when I do my treatment - sometimes a light-weight robe for the evening one. As I have said, when I first used the Vest a year ago, I couldn't even wear an underwire bra when doing it. Now, nothing bothers me. Psychologically, it was a HUGE step for me to decide to go along with my doctor's recommendation to try it. I have had asthma since my mid-20's and I made the decision at that time, that I was NEVER going to allow my disease to define me. Most of my friends have no idea how serious my lung situation is, and that's just fine with me. It is nice, however, to have the support of my pulmonary rehab group - they

totally "get it" and that is valuable. When one has a chronic disease, one simply must accept it and learn how to best cope with it with the least interference with ones daily life. I hate traveling with my Vest - heavy and such a nuisance. Even in the car, it takes up a LOT of room and when I go on my 4 week summer vacation, my SUV is already packed to the gills. It's a nuisance having to set it up at night in the motel, and on the way home, I did not - just missed Sat night and Sun AM. In fact, I missed Sat AM as well as I was running late trying to get everything in order at the rental house I was sharing with my daughter and her family, and not getting a lot of assistance from SIL. I had a ferry to catch and that trumps EVERYTHING, Vest included! I did notice more congestion and I"m getting it up now that I'm home, but at least I now know that I can miss a couple of times and not end up in real trouble.My lung issues together with

just plain getting older are a royal pain in the butt, but I guess the alternative (being dead!) is NOT preferable!!!! I was just thrilled that I was able to unload my car and over several hours haul it up the two flights of stairs from my basement garage. Of course, if it had not been raining hard, I could have parked in the driveway and come in the front door and avoided one flight, but the gods were not with me Sun night! I was just glad it was something I could still do if I had to do so. Small victories over aging and health.....Suzanne

[Guest guest]

Hi Joy,

Thank you for the tip. I never thought of doubling up causing damage. I am supposed to use it twice a day. Once in the morning and once in the evening, but I have been doubling the evening to 40 minutes. I will stop doing that.

I also agree that everyone is different. needs to make the choice about what works for her. We need to learn about what helps our own body. Exercise does help me in the form of walking or aerobics. However, I need a right knee replacement ( 2/3 bone on bone) and have recent stitches of about 1 & 1/2 inches where a squamous cell skin cancer was removed from my left leg. I can't do long walks or exercise until 8/2 when the stitches are removed and hopefully pathology says clean margins. Second large skin cncer removed since last August plus several more removed over recent years. Too much sunning when I was young.

Cindi W.

To: bronchiectasis Sent: Mon, July 25, 2011 11:49:38 PMSubject: Re: nebs. S/vest etc ....

hi Cindi it is so true we have ups and downs, I'm sure all of us have days when it all seems toooo much...

Can I give you a tip re using your vest double time - maybe have slightly gentler settings, less pressure, do 2 shorter sets rather than one long one ... The extra shaking plus already having infx may cause a capillary to burst, sounds frightening but isn't usually serious.

I had a 5-hr bleed over Easter, it was after we got flooded, I'd had a bad cough as a result plus was on IV for infx already, so could have been any of those things, not my doing extra S/Vest - but I was doubling most days trying to clear very gunky lungs. ...

[Guest guest]

some friends saw me doing nebs when I had a face mask and said I

looked liked Ganesh !

joy h

[Guest guest]

Suzanne, do you get much up, if doing other things while doing vest?

I find if I lay down I do get more up - guess it's a bit of drainage

+ vibration ..

I altered my jacket yesterday so sits lower and found the vibration

affected my head a lot less - maybe I could manage to do things at

same time, rather than miss out, which does happen on busy days

sometimes ...

joy h

[Guest guest]

I don't cough, nor do I try to cough when I'm doing my Vest. To me, the point

is to loosen the gunk up and it will come up later on its own. For me, this is

usually late afternoon when I sit down. At that time, I lie down and get it all

up.

I know myself well enough to know that if I didn't have this machine hooked up

and ready to go (along with my nebulizer) next to my computer, which is in my

basement, I simply would never get around to doing it. In the AM when I get up,

I make my bed, take my meds, fix my hair/makeup and get dressed BEFORE coming

downstairs - again, if I came downstairs first, I might get distracted and not

get back upstairs for a long while. I feed the dog, let him outside, feed

myself, brush my teeth, and then go down my basement and do my two machines and

read my email - am doing that right now.

Evening is the hardest time for me. I get distracted or I doze off while

reading, and then I need to go down and do my Vest before dinner etc. I would

ADORE to reach the point where I only did it once daily!

WAY more than you probably wanted to know about my daily routine!!!!

Suzanne

[Guest guest]

I appreciate knowing your routine, Suzanne. We have to make sure we make time for this helper.

To: bronchiectasis Sent: Wednesday, July 27, 2011 8:21 AMSubject: Re: nebs. S/vest etc ....

I don't cough, nor do I try to cough when I'm doing my Vest. To me, the point is to loosen the gunk up and it will come up later on its own. For me, this is usually late afternoon when I sit down. At that time, I lie down and get it all up.I know myself well enough to know that if I didn't have this machine hooked up and ready to go (along with my nebulizer) next to my computer, which is in my basement, I simply would never get around to doing it. In the AM when I get up, I make my bed, take my meds, fix my hair/makeup and get dressed BEFORE coming downstairs - again, if I came downstairs first, I might get distracted and not get back upstairs for a long while. I feed the dog, let him outside, feed myself, brush my teeth, and then go down my basement and do my two machines and read my email - am doing that right now.Evening is the hardest time for me. I get distracted or I doze off while reading, and then I need to go down and do my

Vest before dinner etc. I would ADORE to reach the point where I only did it once daily!WAY more than you probably wanted to know about my daily routine!!!!Suzanne