Re: Update on vest for my mother

[Guest guest]

I’ve been using my Hill-Rom vest for 5 years and it has really helped me. I have found that when I have an infection, I have to keep the vest quite loose. Otherwise it can really be uncomfortable. Try calling Hill-Rom and talk to them about the difficulties your mother is having. They are very helpful. Barb in Wisconsin

[Guest guest]

I had to put my vest up to level 17 in order for it to work for me! I rattles my fillings, but it loosens up the stuff and I can get up a lot of stuff later. I'm 67 and in otherwise healthy condition.Sent from my iPadSuzanne R Brown

I’ve been using my Hill-Rom vest for 5 years and it has really helped me. I have found that when I have an infection, I have to keep the vest quite loose. Otherwise it can really be uncomfortable. Try calling Hill-Rom and talk to them about the difficulties your mother is having. They are very helpful. Barb in Wisconsin

[Guest guest]

>

>

>

>

>I've been using my Hill-Rom vest for 5 years and it has really

>helped me. I have found that when I have an infection, I have to

>keep the vest quite loose. Otherwise it can really be uncomfortable.

Thanks for the advice!

>

>

>Try calling Hill-Rom and talk to them about the difficulties your

>mother is having. They are very helpful.

--

Herb Schilling

[Guest guest]

>

>

>I had to put my vest up to level 17 in order for it to work for me!

> I rattles my fillings, but it loosens up the stuff and I can get up

>a lot of stuff later. I'm 67 and in otherwise healthy condition.

Hi,

Wow. 17 would rattle my fillings if I had any! :-)

Thanks for the reply.

--

Herb Schilling

[Guest guest]

h i Herb

what compression is set on the Vest? It may be too much. I don't

know the H-R as I have Electromeds' but I've heard they're similar.

The compression cycle can be 0 - 100. Try that, hopefully will ease

things. Also can she set for 5 min cycles, have a little break to

make it easier? hope she is able to find setting that is comfortable

and works for her! I have found SO much benefit from mine, I really

KNOW I wouldn't have been going on 7 months no abx, and no hospital

either!

cheers,

Joy

[Guest guest]

I also find it rattles me enough that it helps loosen any sinus

clogging too - a bonus!

joy

[Guest guest]

>

Hi,

>

>what compression is set on the Vest?

The doctor ordered a compression of 4. 10 cycles per second. Start

with 10 minutes and work up to 20.

Unfortunately, it looks like my mother can't use the vest. On Friday

she used it at 8:00 PM. At 10:00 PM, she coughed up a large amount of

blood. Maybe up to a cup. It was unbelievable and very scary. Luckily

it stopped coming a lot after an hour. She is still spitting out some

red tinged mucus today though. She has felt very lousy since then.

Some of this might be being upset about the whole incident. She has

never spit up any blood ever. The only difference now has been a week

on the vest. Needless to say, she hasn't used the vest since and

wants to send it back ASAP.

When it happened, I googled " Hemoptysis airway clearance " and found

that this does

happen sometimes with the vests.

Maybe her old ( she is almost 84 ) blood vessels are just too thin?

But I read about it happening with young people too.

The pulmonologist's nurse told me today my mother should wait for 3

days and then try again. I told her that I doubt my mom will do that.

I also called Hill-Rom and told them what happened. They said their

on staff respiratory therapist would call be but he hasn't yet.

I don't mean to bash the vest! I know it has helped a lot of people

and I guess there is a chance this was just a coincidence. But I

thought everyone should know about this.

While I have your attention, I was wondering if any of you also feel

worse after nebulizing with albuterol. My mom does, sometimes

dramatically so.

> It may be too much. I don't

>know the H-R as I have Electromeds' but I've heard they're similar.

>The compression cycle can be 0 - 100. Try that, hopefully will ease

>things. Also can she set for 5 min cycles, have a little break to

>make it easier? hope she is able to find setting that is comfortable

>and works for her! I have found SO much benefit from mine, I really

>KNOW I wouldn't have been going on 7 months no abx, and no hospital

>either!

--

Herb Schilling

[Guest guest]

Herb, sure hope they can help your Mother buy trying something else. Do you have the cups they use to clap on her back. That might be hard for her too. Has she tried working with plumonary rehab to see if they have any ideas. Sure hope something will end up working to help your Mother. Joy L from Wisconsin

Subject: Re: Update on vest for my motherTo: bronchiectasis Date: Monday, February 7, 2011, 7:43 PM

>Hi,>>what compression is set on the Vest?The doctor ordered a compression of 4. 10 cycles per second. Start with 10 minutes and work up to 20.Unfortunately, it looks like my mother can't use the vest. On Friday she used it at 8:00 PM. At 10:00 PM, she coughed up a large amount of blood. Maybe up to a cup. It was unbelievable and very scary. Luckily it stopped coming a lot after an hour. She is still spitting out some red tinged mucus today though. She has felt very lousy since then. Some of this might be being upset about the whole incident. She has never spit up any blood ever. The only difference now has been a week on the vest. Needless to say, she hasn't used the vest since and wants to send it back ASAP.When it happened, I googled "Hemoptysis airway clearance" and found that this doeshappen sometimes with the vests.Maybe her old ( she is

almost 84 ) blood vessels are just too thin? But I read about it happening with young people too.The pulmonologist's nurse told me today my mother should wait for 3 days and then try again. I told her that I doubt my mom will do that. I also called Hill-Rom and told them what happened. They said their on staff respiratory therapist would call be but he hasn't yet.I don't mean to bash the vest! I know it has helped a lot of people and I guess there is a chance this was just a coincidence. But I thought everyone should know about this.While I have your attention, I was wondering if any of you also feel worse after nebulizing with albuterol. My mom does, sometimes dramatically so.> It may be too much. I don't>know the H-R as I have Electromeds' but I've heard they're similar.>The compression cycle can be 0 - 100. Try that, hopefully will ease>things. Also can she set

for 5 min cycles, have a little break to>make it easier? hope she is able to find setting that is comfortable>and works for her! I have found SO much benefit from mine, I really>KNOW I wouldn't have been going on 7 months no abx, and no hospital>either!-- Herb Schilling

[Guest guest]

Hi Joy,

Thanks for taking the time to write especially since you are going

into the hospital. I hope things work out for you and you get better

soon.

>

>

>Herb, sure hope they can help your Mother buy trying something else.

>Do you have the cups they use to clap on her back.

I never knew there were such things! I just cup my hand.

> That might be hard for her too. Has she tried working with

>plumonary rehab to see if they have any ideas.

Unfortunately, they have never offered up any plumonary rehab.

> Sure hope something will end up working to help your Mother. Joy L

>from Wisconsin

>

I have another update. I had a nice long talk with a respiratory

therapist at Hill-Rom today. I learned a lot from him! I will mention

some things that he said in case it helps others. I know some of this

will not be news to many of you.

1. He said that of course we need to work with my mother's doctor but

he would recommend trying the vest again. The coughing up blood

really could be due to something else. ( He also said that he would

understand if my mother decided against using it again considering

how scary it was and how miserable she felt for days after it

happened. Actually she is still miserable. )

2. He said we could try lowering the pressure to even 1 instead of 4

that the doctor recommended. Also, use it for less time, even 5

minutes. But he did say don't go too low on the cycles per second. If

you go to low you actually feel the pounding more. He used the

analogy of driving on a bumpy road. If you go fast enough you sort of

don't feel it as much as if you drive slowly.

3. The bacteria only grow in the mucus not the lung tissue. So if you

get rid of the mucus, you aren't feeding the bacteria.

4. You can't just use the vest and expect the mucus to come flying

out ( sorry for that image! ). The vest only gets it to where the

user has to actively cough out the mucus. He said he tells kids, you

don't get points for keeping it inside! So while using the vest, you

need to cough.

5. In my mother's case, there is an added problem that because of

some stress incontinence, she actually suppresses her cough often. I

told him that I think she just pushes it back down and he said that I

was exactly right. It's even worse though. He said that you could

push the bacteria into places where it wasn't before by suppressing

coughs.

Hope this helps someone.

--

Herb Schilling

[Guest guest]

Herb, you're a wonderful son to try so hard for your mother! But you do need to

realize that she is 84 yrs old, and in the end, only she can muster the will to

be treated and live - you cannot do this for her, no matter how hard you try.

I think you need to have a very frank talk with her doctor (without her present,

if she will do a HEPA release), and ask him what is realistic in terms of

treatment/progress. Did you call the doctor when she had all that bleeding? If

not, you do need to talk to him about this - it's NOT a typical reaction to the

Vest.

At the same time, ask him about pulmonary rehab in your area. She's NOT too old

for that - we have lots of folks in their late 80's at my rehab. They will have

her do what she can - they won't push her to do things she's not capable of

doing. The camaraderie and just getting up and out will do her a world of good!

She MUST cough and should be given meds that encourage this! Exercise will help

get this stuff up, too. As to the stress incontinence, go buy her some Poise

pads at the drug store - they're wonderful for stress incontinence - no wetness,

no odor, no fear of embarrassment. Suppressing her cough is deadly!

Give all these things a try, and if she resists, you at least will know you did

everything possible to encourage her. In the end, it's going to be up to her.

Suzanne

[Guest guest]

Hi Suzanne,

Herb, you're a wonderful son to try so

hard for your mother! But you do need to realize that she is 84 yrs

old, and in the end, only she can muster the will to be treated and

live - you cannot do this for her, no matter how hard you

try.

Thanks for the wise advice.

I think you need to have a very frank

talk with her doctor (without her present, if she will do a HEPA

release), and ask him what is realistic in terms of

treatment/progress.

We did talk about that. He's pretty good about realizing there's

only so much you can do at some point without making the treatment

worse than the disease.

Did you call the doctor when she

had all that bleeding?

Yes. He said to wait 3 days to see if the bleeding comes back. If

not, go back on the vest.

I do need to call the doctor to let him know what Hill -Rom

said.

If not, you do need to talk to him about

this - it's NOT a typical reaction to the Vest.

At the same time, ask him about pulmonary rehab in your area. She's

NOT too old for that - we have lots of folks in their late 80's at my

rehab. They will have her do what she can - they won't push her to do

things she's not capable of doing. The camaraderie and just getting up

and out will do her a world of good!

I completely agree!! I wish I could get her to go for something

like that. She just doesn't want to go.

She MUST cough and should be given meds

that encourage this!

What meds encourage coughing?

BTW, she does cough but it isn't a productive cough most of the

time.

Exercise will help get this stuff up,

too.

I mentioned that to her yesterday.

As to the stress incontinence, go buy her

some Poise pads at the drug store - they're wonderful for stress

incontinence - no wetness, no odor, no fear of

embarrassment.

She has been using some pads like that when she goes out. I had

never heard of Poise pads. I will check them out! She uses Depends so

far.

Suppressing her cough is deadly!

Give all these things a try, and if she resists, you at least will

know you did everything possible to encourage her. In the end, it's

going to be up to her.

Yes. Thanks!

Suzanne

--

Herb Schilling

[Guest guest]

Sounds like you have this pretty well covered. It's so terribly difficult when an elderly parent refuses all help and advice.Try to find some guaifenesin in liquid form. Unfortunately, Robitussin quit making it - ask your pharmacist for a substitute. In addition, she can also try taking the oral pill, Mucinex. She can take quite a bit of this with no side effects - I take one 1200mg tablet daily plus use liquid guaifenesin as needed. This will give her a more productive cough. Having several cups of hot tea (herbal is best) during the day and lots of water also help. All this will help her cough up this stuff.Poise pads are very thin and yet will absorb a lot of fluid. She should wear one 24 hrs a day so she can cough as much as is needed. They're much more comfortable than Depends.Threaten, cajole, bribe her into at least trying pulmonary rehab! If you can, go with her. Medicare will pay for several weeks, then one pays a small fee. My rehab in KY is $88 a month for 3 times a week. We get a lot of monitoring, including EKGs/blood pressure etc.Good luck! Sent from my iPadSuzanne R Brown

Hi Suzanne,

Herb, you're a wonderful son to try so

hard for your mother! But you do need to realize that she is 84 yrs

old, and in the end, only she can muster the will to be treated and

live - you cannot do this for her, no matter how hard you

try.

Thanks for the wise advice.

I think you need to have a very frank

talk with her doctor (without her present, if she will do a HEPA

release), and ask him what is realistic in terms of

treatment/progress.

We did talk about that. He's pretty good about realizing there's

only so much you can do at some point without making the treatment

worse than the disease.

Did you call the doctor when she

had all that bleeding?

Yes. He said to wait 3 days to see if the bleeding comes back. If

not, go back on the vest.

I do need to call the doctor to let him know what Hill -Rom

said.

If not, you do need to talk to him about

this - it's NOT a typical reaction to the Vest.

At the same time, ask him about pulmonary rehab in your area. She's

NOT too old for that - we have lots of folks in their late 80's at my

rehab. They will have her do what she can - they won't push her to do

things she's not capable of doing. The camaraderie and just getting up

and out will do her a world of good!

I completely agree!! I wish I could get her to go for something

like that. She just doesn't want to go.

She MUST cough and should be given meds

that encourage this!

What meds encourage coughing?

BTW, she does cough but it isn't a productive cough most of the

time.

Exercise will help get this stuff up,

too.

I mentioned that to her yesterday.

As to the stress incontinence, go buy her

some Poise pads at the drug store - they're wonderful for stress

incontinence - no wetness, no odor, no fear of

embarrassment.

She has been using some pads like that when she goes out. I had

never heard of Poise pads. I will check them out! She uses Depends so

far.

Suppressing her cough is deadly!

Give all these things a try, and if she resists, you at least will

know you did everything possible to encourage her. In the end, it's

going to be up to her.

Yes. Thanks!

Suzanne

--

Herb Schilling

[Guest guest]

hi Herb,

I'm late 50s and feel absolutely like death if use albuterol

ESPECIALLY if nebulised, I really think it's best for those who are

asthmatic - is your mother? Saline or mucomyst or similar would be

more appropriate perhaps?

I'm so sorry your Mum went through such horrendous experience with

her vest - it's a shame H-R haven't been more responsive. I'd really

urge you to make sure she sees a doctor - it may not entirely be due

to the vest - just aggravated by it. Pneumonia can also cause

bleeding to that extent otherwise it's not usually so copious. The

amount I find a bit worrying... Did you Mother use the vest soon

after the doing albuterol - may also have contributed?

Pls, understand I'm concerned - but no expert, and really feel the

amount of blood in itself is cause to investigate further.

Hope I'm not frightening you unduly, but it could be a big help to

your mom to see a doctor, just to be sure. (note - she may not have

any fever because of her age).

all the best,

Joy H

[Guest guest]

hi Herb,

that was excellent info and thx for passing it on to us all. It's

often a trial learning these new things and finding our feet with them!

I've found around 10-12 hz the gentlest and still effective - for

your mum my experience is that 14 for 3 mins would be the top to

begin with. (try it out yourself, to get a feel of it). The

incontinence is pretty awful - when unwell have had same problem, and

have had to 'make adjustments' - but yes, doing huff coughs gently

while the vest is going, then a cough when it's sound high up enough

should help its effectiveness.

joy H

[Guest guest]

hi Herb,

if your mom is still feeling negative effects from albuterol try

halving or just using puffer before doing nebs, to help open up the

lungs. When I was super-congested I found that more helpful and

easier to tolerate than doing ventolin/albuterol nebs.

Many of us have found docs give us meds for asthma even tho don't

have it - lord knows why but it seems quite a common occurrence.

I'm happy H-R got back to you, it is important to have advice with

such a device as a vest. How is she managing now?

I lie down on soft pillows, semi-reclining, so its easy to sit up to

cough and do huff breaths as same time. They don't need to be really

energetic but some form of breathing is needed for the vest to work,

as it won't be effective just on its own. It could also be used

while doing nebs, but I find the solution splashes too much, so do it

afterwards.

I always have mixed feelings about coughing up an amt of blood ...

and have had varied responses. Guess you can only go along with what

your doc advises but do be aware older people doesn't usually have

temp or much symptoms of fever at all for pneumonia, and coughing

blood is. Perhaps as well to keep an eye on her general health,

which it sounds like you do really well any way. It's so wonderful

you look after her the way you do... it's not an easy disease even

when you're younger - I think a few would concur!

cheers,

joy

[Guest guest]

Hi,

if your mom is still feeling negative

effects from albuterol try

halving or just using puffer before doing nebs, to help open up

the

lungs. When I was super-congested I found that more helpful and

easier to tolerate than doing ventolin/albuterol nebs.

Many of us have found docs give us meds for asthma even tho don't

have it - lord knows why but it seems quite a common

occurrence.

Thank you for the advice.

I'm happy H-R got back to you, it is important to have advice

with

such a device as a vest. How is she

managing now?

Right now she does not want to use the vest. She thinks it

actually stops her from coughing up.

On the positive side, the Mucomyst seems to be working great! She

had " a good day " today which almost never happens any more.

She also said that it really lets her cough up the mucous more

easily.

BTW, do others use both Mucomyst and albuterol ? Do you nebulize

them at the same time?

I lie down on soft pillows, semi-reclining, so its easy to sit up

to

cough and do huff breaths as same time. They don't need to be

really

energetic but some form of breathing is needed for the vest to

work,

as it won't be effective just on its own.

That's interesting. She sits very erect while using it when she

used it. ( I am hoping she goes back to it but right now we are

on a very mini roll, so I don't want to ruin things! ) I will suggest

it to her.

It could also be used

while doing nebs, but I find the solution splashes too much, so do

it

afterwards.

I always have mixed feelings about coughing up an amt of blood ...

and have had varied responses. Guess you can only go along with

what

your doc advises but do be aware older people doesn't usually have

temp or much symptoms of fever at all for pneumonia, and coughing

blood is. Perhaps as well to keep an eye on her general

health,

Except for the lung problems, which I know is a very big deal,

her health is very good. Great blood work, strong heart.

which it sounds like you do really well

any way. It's so wonderful

you look after her the way you do... it's not an easy disease even

when you're younger - I think a few would concur!

cheers,

joy

--

Herb Schilling

[Guest guest]

hi Herb,I have to agree, don't push the vest if your Mum is doing fine with nebs - it's a lot to take on all at once.  I started with all this in 08, late 50s and found it challenging.  How about 84?  She's doing absolutely fine!  Have you put the vest on yourself, just to feel what it's like...may give a clue as to what may be more comfortable if at some later stage she really needs the extra physio it gives.Re nebulised solutions.  I hope by -"BTW, do others use both Mucomyst and albuterol ? Do you nebulize them at the same time?"- you don't mean mixing them or doing the nebs immediately following the other.  I've been strongly warned against mixing neb solutions or using too close together.  If do use, say a ventolin-type, then wait circa 30 mins before eg saline or Mucomyst.  I prefer saline - cleaner, easier than Mucomyst which has a rather oily unpleasant odour and taste - but hey, your Mum can tolerate it and finds benefit!  The glass vials, aren't easy to break the cap off (have shattered several. I now use a cloth to handle the vial & keep turning it til a weak spot allows a cleanish break). all the best, and thank you for looking after her...joy