Re: oxygen therapy (June)/vest

[Guest guest]

hi June

thx for your experience using a 'vest'. Even tho it didn't suit you

I'm glad you found the Flutter Valve did! & having to use a 'vest'

does take time, its bulky to carry I'm glad you no longer have to do

it if it's no help to you.

I devised a questionnaire more generic, more about health, dx,

benefits/otherwise with using a vest... would you be interested to

do one? only 2 pages. All info will help form an idea of what kind

of symptoms would respond, whether its ideally used for acute

exacerbations to prevent needing it full-time.... all just ideas at

this stage! Hopefully will help drs know if suitable to prescribe.

Had a thought... do you do huff breathings etc while using the Vest,

also using Flutter Valve at same time? Nebs before using Vest

improve results... have you experimented with the settings, trying

out different programming? Apparently 12-16 hz is the same vibration

rate of cilia. Hope I'm not being condescending.... just not sure

what others do. I have seen posts where people have disliked the

vest cos too strong, but puzzled as mine is variable and

controllable. I'd imagine for the $18000 the Hill-Rom Vest should be

pretty good!

I found using the nebs (6% saline suits me best) b4 using the 'vest'

improves the efficacy of the vest. Maybe you've compacted -

'plugged' too much? IF the mucus is thinned out it really helps

removal.

re Oxygen sat, feeling breathless but no better after O2, I found

this also, puzzled me heaps. Since having a 'vest' (here I go

again!) have so much less secretion I don't have sensation of " can't

breathe " , or not getting enough air. Now I think it was my lungs

were totally full of gunk.

I've often wondered about fibrosis, what different symptoms it may be

responsible for, can't seem to get any info out of docs on that one.

Surely your doc can find out what the reading for the cardiology was

- all he'd have to do is ring up one would have thought....

What is 'NTM' - a new one on me.... It really is so frustrating and

depressing when so many things keep getting worse and then there's

more..l I felt like that for the past few yrs and still sev years to

60yo.

I have found since not taking so many meds I feel much better

generally. strong abx affect sleep, appetite, energy etc as much as

the infx. Our drs here aren't keen on continual abx. As explained

to me: mucus plugs off parts of lung where infx is & little O2 or

blood supply which has to carry the abx gets to infx. A bit will get

SOME abx, and therefore be able to develop resistance. Apparently

the bug will be sensitive (sometimes) again after a break. The

problem is worse if a hospital-acquired bug cos they've already had

everything thrown at them. The only reason I can manage at all now

is by keeping down the amount of secretions = less infx. This is

what the Flutter valve needs to do, or whatever works best...

I wish there was something I knew could help you, I know how awful

that feeling is of constantly battling, always at edge of exhaustion,

never really feeling good. I do hope you able to find a solution

soon.... maybe try find out what the number was on the cardiology

report, perhaps there's more there to understand? btw Marilyn, in

this group, has pulm hypertension, maybe she can help you? Also she

lives in US.

I do wish all the best for you...

joy

[Guest guest]

Joy I don't know how you find the time to help everyone. You're really a wonderful person. I had my bronchiectasis completely under control for a couple of years. They found out I had the Nocardia bug and I took sulfatrim for 2 years and I was completely well for 2 years. I had no symptoms of bronch - no mucus, no cough no anything. Then I took the swine flu shot and a week and a half later I had the worst cough of my life. Then the bronchiectasis came back with all the problems. I would be happy to fill out a questionnaire for you and try to help everyone with my experiences. NTM is short for non tuberculosis micobacteria disease. It's something you don't want to get. If you have this, you have to take 3 strong antibiotics for 12 months or more, These antibiotics are difficult for everyone to take. It's a must to treat the disease or

it will kill you. I was doing ok and going out and breathing ok until I came up with this disease. My doctor says I shouldn't be this bad and we're trying to figure out what is wrong. My daughter is a cardiologist and she's trying to help me solve this problem too. I'm questioning everything including the environment. Anyway I'm 85 years old and have had bronchiectasis for about 10 years. My husband has it too but a mild case of it. It is rare for 2 people in one family to have it because it is not contagious. Many years ago we went to the jungle and stayed at a hotel with bad air conditioning. I couldn't talk the next day. Maybe that is where we got it. June KSubject: Re:

oxygen therapy (June)/vestTo: bronchiectasis Date: Monday, October 11, 2010, 3:06 AM

hi June

thx for your experience using a 'vest'. Even tho it didn't suit you

I'm glad you found the Flutter Valve did! & having to use a 'vest'

does take time, its bulky to carry I'm glad you no longer have to do

it if it's no help to you.

I devised a questionnaire more generic, more about health, dx,

benefits/otherwise with using a vest... would you be interested to

do one? only 2 pages. All info will help form an idea of what kind

of symptoms would respond, whether its ideally used for acute

exacerbations to prevent needing it full-time.... all just ideas at

this stage! Hopefully will help drs know if suitable to prescribe.

Had a thought... do you do huff breathings etc while using the Vest,

also using Flutter Valve at same time? Nebs before using Vest

improve results... have you experimented with the settings, trying

out different programming? Apparently 12-16 hz is the same vibration

rate of cilia. Hope I'm not being condescending.... just not sure

what others do. I have seen posts where people have disliked the

vest cos too strong, but puzzled as mine is variable and

controllable. I'd imagine for the $18000 the Hill-Rom Vest should be

pretty good!

I found using the nebs (6% saline suits me best) b4 using the 'vest'

improves the efficacy of the vest. Maybe you've compacted -

'plugged' too much? IF the mucus is thinned out it really helps

removal.

re Oxygen sat, feeling breathless but no better after O2, I found

this also, puzzled me heaps. Since having a 'vest' (here I go

again!) have so much less secretion I don't have sensation of "can't

breathe", or not getting enough air. Now I think it was my lungs

were totally full of gunk.

I've often wondered about fibrosis, what different symptoms it may be

responsible for, can't seem to get any info out of docs on that one.

Surely your doc can find out what the reading for the cardiology was

- all he'd have to do is ring up one would have thought....

What is 'NTM' - a new one on me.... It really is so frustrating and

depressing when so many things keep getting worse and then there's

more..l I felt like that for the past few yrs and still sev years to

60yo.

I have found since not taking so many meds I feel much better

generally. strong abx affect sleep, appetite, energy etc as much as

the infx. Our drs here aren't keen on continual abx. As explained

to me: mucus plugs off parts of lung where infx is & little O2 or

blood supply which has to carry the abx gets to infx. A bit will get

SOME abx, and therefore be able to develop resistance. Apparently

the bug will be sensitive (sometimes) again after a break. The

problem is worse if a hospital-acquired bug cos they've already had

everything thrown at them. The only reason I can manage at all now

is by keeping down the amount of secretions = less infx. This is

what the Flutter valve needs to do, or whatever works best...

I wish there was something I knew could help you, I know how awful

that feeling is of constantly battling, always at edge of exhaustion,

never really feeling good. I do hope you able to find a solution

soon.... maybe try find out what the number was on the cardiology

report, perhaps there's more there to understand? btw Marilyn, in

this group, has pulm hypertension, maybe she can help you? Also she

lives in US.

I do wish all the best for you...

joy

[Guest guest]

Hi Joy: I use the Smart vest and would be glad to answer your questionnaire, it has been very helpful to me.RuthTo: bronchiectasis Sent: Mon, October 11, 2010 3:06:53 AMSubject: Re: oxygen therapy

(June)/vest

hi June

thx for your experience using a 'vest'. Even tho it didn't suit you

I'm glad you found the Flutter Valve did! & having to use a 'vest'

does take time, its bulky to carry I'm glad you no longer have to do

it if it's no help to you.

I devised a questionnaire more generic, more about health, dx,

benefits/otherwise with using a vest... would you be interested to

do one? only 2 pages. All info will help form an idea of what kind

of symptoms would respond, whether its ideally used for acute

exacerbations to prevent needing it full-time.... all just ideas at

this stage! Hopefully will help drs know if suitable to prescribe.

Had a thought... do you do huff breathings etc while using the Vest,

also using Flutter Valve at same time? Nebs before using Vest

improve results... have you experimented with the settings, trying

out different programming? Apparently 12-16 hz is the same vibration

rate of cilia. Hope I'm not being condescending.... just not sure

what others do. I have seen posts where people have disliked the

vest cos too strong, but puzzled as mine is variable and

controllable. I'd imagine for the $18000 the Hill-Rom Vest should be

pretty good!

I found using the nebs (6% saline suits me best) b4 using the 'vest'

improves the efficacy of the vest. Maybe you've compacted -

'plugged' too much? IF the mucus is thinned out it really helps

removal.

re Oxygen sat, feeling breathless but no better after O2, I found

this also, puzzled me heaps. Since having a 'vest' (here I go

again!) have so much less secretion I don't have sensation of "can't

breathe", or not getting enough air. Now I think it was my lungs

were totally full of gunk.

I've often wondered about fibrosis, what different symptoms it may be

responsible for, can't seem to get any info out of docs on that one.

Surely your doc can find out what the reading for the cardiology was

- all he'd have to do is ring up one would have thought....

What is 'NTM' - a new one on me.... It really is so frustrating and

depressing when so many things keep getting worse and then there's

more..l I felt like that for the past few yrs and still sev years to

60yo.

I have found since not taking so many meds I feel much better

generally. strong abx affect sleep, appetite, energy etc as much as

the infx. Our drs here aren't keen on continual abx. As explained

to me: mucus plugs off parts of lung where infx is & little O2 or

blood supply which has to carry the abx gets to infx. A bit will get

SOME abx, and therefore be able to develop resistance. Apparently

the bug will be sensitive (sometimes) again after a break. The

problem is worse if a hospital-acquired bug cos they've already had

everything thrown at them. The only reason I can manage at all now

is by keeping down the amount of secretions = less infx. This is

what the Flutter valve needs to do, or whatever works best...

I wish there was something I knew could help you, I know how awful

that feeling is of constantly battling, always at edge of exhaustion,

never really feeling good. I do hope you able to find a solution

soon.... maybe try find out what the number was on the cardiology

report, perhaps there's more there to understand? btw Marilyn, in

this group, has pulm hypertension, maybe she can help you? Also she

lives in US.

I do wish all the best for you...

joy

[Guest guest]

hi Ruth,

did you receive one I sent - I'll send as attached word doc to your

private address if you wish...

cheers,

JOy

[Guest guest]

I SENT IT BACK, NOT SURE HOW TO DO THE ATTACHMENT, HOPE YOU RECEIVED ITRUTHTo: bronchiectasis Sent: Wed, October 13, 2010 7:19:21 AMSubject: Re: oxygen therapy (June)/vest

hi Ruth,

did you receive one I sent - I'll send as attached word doc to your

private address if you wish...

cheers,

JOy

[Guest guest]

hi Ruth,

yes all received, but the questionnaire seemed exactly the same, did

you do any changes? Maybe do them in bold, or a colour perhaps.

cheers,

joy

[Guest guest]

Hello all, Joy--

it's such a wonderful thing to be able to even get out into the garden - to be able to cut back trees etc is even more amazing.

I too look back at 4-5 years ago, and remember cutting my lemon tree back, sowing new herbs, garlic and all.

NOW- I find it hard enough just to take the lemons off the tree, and give the plants a good dose of plant food once in a while.

I cannot get around to doing all, now because of the physical issues- that of course are all attributed to over doses- overprescribes medications-- I too get puffed- use a puffer 6 times a day- because muscles etc not working well- to support lungs etc.

BUT simply sitting in the sun- looking at the trees and the odd bloom--- brings me right back to thanking god- I am in the yard and not in bed- and must say- I then think well why am I not trying harder to breathe-- because in past all the breathing techs came to me naturally-- now I have to sit- think- and feel like I really am part of nature--- and once allow myself- 10 minutes Sandy time-- I do breathe well- I go pick up balls kids have lost over my fence- I do walk around the yard- and look at what REALLY needs my attention--and even if it doesn't happen then- it will get done- main thing is-- I got out into the sunlight- fresh air, and put myself into the world around me- NATURE- not like every other day- where I am surrounded by unwell- people- people recovering etc. Making time to touch base with nature automatically puts air into lungs and , warmth, and thankfulness for clear blue sky- last week we were flooded- but we know that's not going to last-- oh how getting drenched to skin felt good- momentarily lol.

So pleased to hear about your getting the vest--

I never get over the 200 mark on the ??? ( alzheimers next).

But havent got over 200 for over 30 years- o2 is always under 97 too- now adays--

BUT meds too have added to those issues too- real life--is getting out and about- however we do it.

Hugs.

Sandy