Re: which bronchodilators do you all recommend?

[Guest guest]

Definitely xopenex

:-)

On 9/6/08 7:23 PM, " Moss " <lindajmoss@...> wrote:

> just preparing my medicine box for autumn after a very dreary summer here in

> england!

>

> my ventolin bronchodilator is passed its use by date so i need something new

> for my nebuliser. i was wondering which bronchodialator anyone could

> recommend, especially in terms of not making the heart beat faster!

>

> also wondering if there was anything new out there to help our airways cope

> with respiratory infections.

>

> cheers

> linda

>

>

[Guest guest]

h's arsenal for respiratory illnesses includes 3 meds. Her bronchodilator is

xopenex, and we use pulmicort (an inhaled steroid) and pulmozyme (enzymes to

break down thick/sticky junk in the lungs) as a second level. General protocol

is to use the pulmicort daily, but h has had success with only using it when

sick. If she had any sort of deterioration of her pumonary function, though, we

would move to daily use. We've also discussed the prospect of using hypertonic

saline nebs. Her pulmo has agreed that when/if she has a pneumonia requiring

hospitalization we will try it.  

 

 Love and Hugs

         Jeni

                              

which bronchodilators do you all recommend?

just preparing my medicine box for autumn after a very dreary summer here in

england!

my ventolin bronchodilator is passed its use by date so i need something new

for my nebuliser. i was wondering which bronchodialator anyone could

recommend, especially in terms of not making the heart beat faster!

also wondering if there was anything new out there to help our airways cope

with respiratory infections.

cheers

linda

[Guest guest]

What are hypertonic saline nebs?

On 9/7/08 12:14 AM, " Jenifer Woody " <mom2armybratz@...> wrote:

> h's arsenal for respiratory illnesses includes 3 meds. Her

> bronchodilator is xopenex, and we use pulmicort (an inhaled steroid) and

> pulmozyme (enzymes to break down thick/sticky junk in the lungs) as a

> second level. General protocol is to use the pulmicort daily, but h has

> had success with only using it when sick. If she had any sort of deterioration

> of her pumonary function, though, we would move to daily use. We've also

> discussed the prospect of using hypertonic saline nebs. Her pulmo has agreed

> that when/if she has a pneumonia requiring hospitalization we will try it.  

>  

>  Love and Hugs

>          Jeni

>                               

>

> which bronchodilators do you all recommend?

>

> just preparing my medicine box for autumn after a very dreary summer here in

> england!

>

> my ventolin bronchodilator is passed its use by date so i need something new

> for my nebuliser. i was wondering which bronchodialator anyone could

> recommend, especially in terms of not making the heart beat faster!

>

> also wondering if there was anything new out there to help our airways cope

> with respiratory infections.

>

> cheers

> linda

>

>

[Guest guest]

I only take Duoneb when sick. But like Doug, I take nothing on a daily basis.

There is no need since I'm not asthmatic. I'm on a vent 24/7 and have a

trach, but bronchodilators would not have postponed or prevented that.

Vicki

**************Psssst...Have you heard the news? There's a new fashion blog,

plus the latest fall trends and hair styles at StyleList.com.

(http://www.stylelist.com/trends?ncid=aolsty00050000000014)

[Guest guest]

I agree with , Xopenex rocks!! ~a

From: Moss <lindajmoss@...>

Subject: which bronchodilators do you all recommend?

" " < >

Date: Saturday, September 6, 2008, 8:23 PM

just preparing my medicine box for autumn after a very dreary summer

here in

england!

my ventolin bronchodilator is passed its use by date so i need something new

for my nebuliser. i was wondering which bronchodialator anyone could

recommend, especially in terms of not making the heart beat faster!

also wondering if there was anything new out there to help our airways cope

with respiratory infections.

cheers

linda

[Guest guest]

I'm asking my dr for that pulmozyne med. Is that the same med given

to people with cystic fibrosis?

Use the pulmocort intermittently. Using it everyday can damage bone

density.

Pulmocort is a good med when you have resp infections that are

lingering on.

>

> h's arsenal for respiratory illnesses includes 3 meds. Her

bronchodilator is xopenex, and we use pulmicort (an inhaled steroid)

and pulmozyme (enzymes to break down thick/sticky junk in the lungs)

as a second level. General protocol is to use the pulmicort daily,

but h has had success with only using it when sick. If she had

any sort of deterioration of her pumonary function, though, we would

move to daily use. We've also discussed the prospect of using

hypertonic saline nebs. Her pulmo has agreed that when/if she has

a pneumonia requiring hospitalization we will try it.  

>  

>  Love and Hugs

>          Jeni

>                               

>

>

>

> which bronchodilators do you all recommend?

>

>

> just preparing my medicine box for autumn after a very dreary

summer here in

> england!

>

> my ventolin bronchodilator is passed its use by date so i need

something new

> for my nebuliser. i was wondering which bronchodialator anyone could

> recommend, especially in terms of not making the heart beat faster!

>

> also wondering if there was anything new out there to help our

airways cope

> with respiratory infections.

>

> cheers

> linda

>

>

[Guest guest]

I don't use any unless I'm really sick.

Kemp

Director, OurGV Rewards

<http://www.ourgvrewards.com/> http://www.ourgvrewards.com

Phone: 714-974-5799

Business Phone: 714-974-5693

Cell Phone: 714-244-5920

Phone: 949-579-9465

Email 1: d-kemp@...

Email 2: dkemp@...

<http://www.ourgvmall.com/djk> banner021.jpg

From: [mailto: ] On

Behalf Of a B.

Sent: Sunday, September 07, 2008 12:40 PM

Subject: Re: which bronchodilators do you all recommend?

I agree with , Xopenex rocks!! ~a

From: Moss <lindajmoss@... <mailto:lindajmoss%40gmail.com> >

Subject: which bronchodilators do you all recommend?

" <mailto:%40> "

< <mailto:%40> >

Date: Saturday, September 6, 2008, 8:23 PM

just preparing my medicine box for autumn after a very dreary summer here in

england!

my ventolin bronchodilator is passed its use by date so i need something new

for my nebuliser. i was wondering which bronchodialator anyone could

recommend, especially in terms of not making the heart beat faster!

also wondering if there was anything new out there to help our airways cope

with respiratory infections.

cheers

linda

[Guest guest]

i absolutely agree Doug! I guess I should have mentioned that h does not use

any inhaled meds on a daily basis. If she starts to get a little *stuffy* we do

standard saline (not hypertonic) nebs. If she starts feeling tight/wheezy we add

xopenex. If she gets really congested we add pulmocort and pulmozyme. If those

three aren't doing the trick (in conjunction with q2 therapy) then she probably

needs to be in the PCCU anyway!

 

 Love and Hugs

         Jeni

                              

which bronchodilators do you all recommend?

" @gro ups.com <mailto:% 40groups. com> "

<@gro ups.com <mailto:% 40groups. com> >

Date: Saturday, September 6, 2008, 8:23 PM

just preparing my medicine box for autumn after a very dreary summer here in

england!

my ventolin bronchodilator is passed its use by date so i need something new

for my nebuliser. i was wondering which bronchodialator anyone could

recommend, especially in terms of not making the heart beat faster!

also wondering if there was anything new out there to help our airways cope

with respiratory infections.

cheers

linda

[Guest guest]

Hypertonic saline is a more concentrated form of saline. Normal saline is 0.9%.

I've tried up to 5% but believe some people with CF have used 7%. I, personally

found the hypertonic saline to be very irritating and it caused more congestion.

I'm a huge fan of hypotonic saline though. Hypotonic, or half saline, is 0.45%

and has worked wonderfully for me, post trach (didn't know about it until then).

My daily regiment is

            DuoNeb: 2x/day

or q4hrs PRN

            Pulmicort:

2x/day (.5mg/2ml)

            Pulmozyme:

2x/day

            Saline:  as needed for nebs

            Tobi:

2x/day (14 day cycles)

While I'm aware Pulmicort can cause bone density issues, for me, the importance

of lung health surpasses the possibility of my already weak bones from becoming

weaker (I'm almost 21 and have yet to officially break any bones).

MJ Purk

SMA type I+, 20 years old

“Your life is an occasion, rise to it.†~ Hoffman in Mr. Magorium's

Wonder Emporium

Ask me about B4SMA – Blankets for SMA kids, Our-SMA-Angels websites, and

Personalized Merchandise!

www.our-sma-angels.com/b4sma - B4SMA, My organization

www.our-sma-angels.com/Margaret - My website

www.cafepress.com/b4sma - My Shop

Re: which bronchodilators do you all recommend?

=2

0

Posted by: " "

nicoleroberts@...

 

relyingonjoy

Sat Sep 6, 2008 10:19 pm (PDT)

What are hypertonic saline nebs?

[Guest guest]

thanks for all the great info which for me has raised more questions!

what does you mean by " in conjunction with q2 therapy " jeni?

and mj what do you mean by duoneb? and tobi?

cheers

linda

2008/9/7 MJ Purk <TWEETYROLL88@...>

>

>

> Hypertonic saline is a more concentrated form of saline. Normal saline is

> 0.9%. I've tried up to 5% but believe some people with CF have used 7%. I,

> personally found the hypertonic saline to be very irritating and it caused

> more congestion. I'm a huge fan of hypotonic saline though. Hypotonic, or

> half saline, is 0.45% and has worked wonderfully for me, post trach (didn't

> know about it until then).

> My daily regiment is

>

> DuoNeb: 2x/day

> or q4hrs PRN

>

> Pulmicort:

> 2x/day (.5mg/2ml)

>

> Pulmozyme:

> 2x/day

>

> Saline: as needed for nebs

>

> Tobi:

> 2x/day (14 day cycles)

>

> While I'm aware Pulmicort can cause bone density issues, for me, the

> importance of lung health surpasses the possibility of my already weak bones

> from becoming weaker (I'm almost 21 and have yet to officially break any

> bones).

>

> MJ Purk

> SMA type I+, 20 years old

> " Your life is an occasion, rise to it. " ~ Hoffman in Mr. Magorium's

> Wonder Emporium

>

> Ask me about B4SMA – Blankets for SMA kids, Our-SMA-Angels websites, and

> Personalized Merchandise!

>

> www.our-sma-angels.com/b4sma - B4SMA, My organization

> www.our-sma-angels.com/Margaret - My website

> www.cafepress.com/b4sma - My Shop

>

>

> Re: which bronchodilators do you all recommend?

> =2

> 0

>

> Posted by: " "

> nicoleroberts@... <nicoleroberts%40usfamily.net>

>

>

> relyingonjoy

>

>

>

> Sat Sep 6, 2008 10:19 pm (PDT)

>

> What are hypertonic saline nebs?

>

>

[Guest guest]

ok i googled duoneb and understand now. wondering if i should try duoneb and

xopenex to see which has least effect on my heart rate

2008/9/7 <VickiLJurney@...>

> I only take Duoneb when sick. But like Doug, I take nothing on a daily

> basis.

> There is no need since I'm not asthmatic. I'm on a vent 24/7 and have a

> trach, but bronchodilators would not have postponed or prevented that.

>

> Vicki

>

> **************Psssst...Have you heard the news? There's a new fashion blog,

>

> plus the latest fall trends and hair styles at StyleList.com.

> (http://www.stylelist.com/trends?ncid=aolsty00050000000014)

>

>

>

[Guest guest]

When I said " q2 therapy " I was referring to how often we are doing RT treatments

(nebs, postural drainage, cpt, coughing, suction). Q2 is every 2 hours. We

usually start with q4 when she's sick and if it isn't helping enough we do q2.

The downside is that when we're on q2 we only get about 15 minutes between the

end of one session and the beginning of another.

 

 Love and Hugs

         Jeni

                              

Re: Re: which bronchodilators do you all recommend?

thanks for all the great info which for me has raised more questions!

what does you mean by " in conjunction with q2 therapy " jeni?

and mj what do you mean by duoneb? and tobi?

cheers

linda

2008/9/7 MJ Purk <TWEETYROLL88@...>

>

>

> Hypertonic saline is a more concentrated form of saline. Normal saline is

> 0.9%. I've tried up to 5% but believe some people with CF have used 7%. I,

> personally found the hypertonic saline to be very irritating and it caused

> more congestion. I'm a huge fan of hypotonic saline though. Hypotonic, or

> half saline, is 0.45% and has worked wonderfully for me, post trach (didn't

> know about it until then).

> My daily regiment is

>

>            DuoNeb: 2x/day

> or q4hrs PRN

>

>            Pulmicort:

> 2x/day (.5mg/2ml)

>

>            Pulmozyme:

> 2x/day

>

>            Saline:  as needed for nebs

>

>            Tobi:

> 2x/day (14 day cycles)

>

> While I'm aware Pulmicort can cause bone density issues, for me, the

> importance of lung health surpasses the possibility of my already weak bones

> from becoming weaker (I'm almost 21 and have yet to officially break any

> bones).

>

> MJ Purk

> SMA type I+, 20 years old

> " Your life is an occasion, rise to it. " ~ Hoffman in Mr. Magorium's

> Wonder Emporium

>

> Ask me about B4SMA – Blankets for SMA kids, Our-SMA-Angels websites, and

> Personalized Merchandise!

>

> www.our-sma-angels.com/b4sma - B4SMA, My organization

> www.our-sma-angels.com/Margaret - My website

> www.cafepress.com/b4sma - My Shop

>

>

> Re: which bronchodilators do you all recommend?

> =2

> 0

>

> Posted by: " "

> nicoleroberts@... <nicoleroberts%40usfamily.net>

>

>

> relyingonjoy

>

>

>

> Sat Sep 6, 2008 10:19 pm (PDT)

>

> What are hypertonic saline nebs?

>

>

[Guest guest]

I thought many SMAers had restrictive airway disease, which is basically

asthma??? Like MJ, I also have asthma and am on a daily regiment of

treatments.

I take Advair (230/21) 2 puffs BID (abbrev for 2x's a day). Advair is

basically a bronchodilater plus an inhaled steroid. I use the MDI rather than

disc b/c I have a trach and sometimes take it inline w/the vent. If I'm off

the vent I use a chamber when taking the MDI. I then can use Albuterol PRN (as

needed). Albuterol increases the heart rate, but it doesn't bother me since

I have a pacemaker set at 90. Lately I've been short of breath, coughing,

and using the Albuterol more frequently, so my Dr had put me on: 2-3 weeks of

steroids, then started an antibiotic when the steroids didn't entirely work

(I'd say I was at 80%, but def not baseline), increased my Advair, and ordered

the coughilater BID. I hate that machine and used to say I'll never do it

at home, so it just upsets me (physically and emotionally since was

practically attached to that thing 24/7) to have to be dependent on it, but I'll

do what I gotta do since you gotta breathe, right? We'll see how compliant I

am about the 2x's/day tho. I think this is mostly allergies eventho I had

no history of allergies in the past.

Kimi

}i{ Visit my myspace page and blogs: _www.myspace.com/ksmile96_

(http://www.myspace.com/ksmile96) }i{

" When you're gone, the pieces of my heart are missing you. When you're

gone, the face I used to know is missing too. When you're gone all the words I

need to hear to always get me thru the day and make it ok. I miss you. "

-Avril Lavigne

In a message dated 9/9/2008 2:32:50 P.M. Eastern Daylight Time,

TWEETYROLL88@... writes:

Unlike a lot of people with SMA, I do have asthma. That is why I am on a

every day regiment of breathing treatments.

, I would try the xoponex first as DuoNeb, as it's name implies,

contains 2 medications both of which can increase your heart rate. Tobi is an

inhaled antibiotic that only treats infections in the lung, it doesn't affect

your

entire body systemically. I use it because I have lung symptoms of a CF

patient. Good luck!

MJ Purk

SMA type I+, 20 years old

“Your life is an occasion, rise to it.†~ Hoffman in Mr. Magorium's

Wonder Emporium

Ask me about B4SMA – Blankets for SMA kids, Our-SMA-Angels websites, and

Personalized Merchandise!

www.our-sma-www.our-smawww.our-sma-<WBR>angels.com/<WBR>b

www.our-sma-www.our-smawww.our-sma-<WBR>angels.c

www.cafepress.www.cafepress.<WBR>

From: Moss <_lindajmoss@..._ (mailto:lindajmoss@...) >

_@groSMAfrie_ (mailto: )

Sent: Sunday, September 7, 2008 4:15:29 PM

Subject: Re: Re: which bronchodilators do you all recommend?

thanks for all the great info which for me has raised more questions!

what does you mean by " in conjunction with q2 therapy " jeni?

and mj what do you mean by duoneb? and tobi?

cheers

linda

[Non-text portions of this message have been removed]

**************Psssst...Have you heard the news? There's a new fashion blog,

plus the latest fall trends and hair styles at StyleList.com.

(http://www.stylelist.com/trends?ncid=aolsty00050000000014)

[Guest guest]

Unlike a lot of people with SMA, I do have asthma. That is why I am on a every

day regiment of breathing treatments.

, I would try the xoponex first as DuoNeb, as it's name implies, contains 2

medications both of which can increase your heart rate. Tobi is an inhaled

antibiotic that only treats infections in the lung, it doesn't affect your

entire body systemically. I use it because I have lung symptoms of a CF patient.

Good luck!

MJ Purk

SMA type I+, 20 years old

“Your life is an occasion, rise to it.†~ Hoffman in Mr. Magorium's

Wonder Emporium

Ask me about B4SMA – Blankets for SMA kids, Our-SMA-Angels websites, and

Personalized Merchandise!

www.our-sma-angels.com/b4sma - B4SMA, My organization

www.our-sma-angels.com/Margaret - My website

www.cafepress.com/b4sma - My Shop

From: Moss <lindajmoss@...>

Sent: Sunday, September 7, 2008 4:15:29 PM

Subject: Re: Re: which bronchodilators do you all recommend?

thanks for all the great info which for me has raised more questions!

what does you mean by " in conjunction with q2 therapy " jeni?

and mj what do you mean by duoneb? and tobi?

cheers

linda

[Guest guest]

It is my understanding that airway restriction is not part of SMA; yet,

weakness of diaphragm is. That is what makes it difficult for us to breathe.

Vicki

**************Psssst...Have you heard the news? There's a new fashion blog,

plus the latest fall trends and hair styles at StyleList.com.

(http://www.stylelist.com/trends?ncid=aolsty00050000000014)

[Guest guest]

Kimi,

I don’t have restrictive airway disease and neither does my wife . Is

that common? I’ve never heard of it. You have a bad heart? Is that common

with SMAers too?

Kemp

Director, OurGV Rewards

<http://www.ourgvrewards.com/> http://www.ourgvrewards.com

Phone: 714-974-5799

Business Phone: 714-974-5693

Cell Phone: 714-244-5920

Phone: 949-579-9465

Email 1: d-kemp@...

Email 2: dkemp@...

<http://www.ourgvmall.com/djk> banner021.jpg

From: [mailto: ] On Behalf

Of Ksmile96@...

Sent: Tuesday, September 09, 2008 3:17 PM

Subject: Re: Re: which bronchodilators do you all recommend?

I thought many SMAers had restrictive airway disease, which is basically

asthma??? Like MJ, I also have asthma and am on a daily regiment of treatments.

I take Advair (230/21) 2 puffs BID (abbrev for 2x's a day). Advair is

basically a bronchodilater plus an inhaled steroid. I use the MDI rather than

disc b/c I have a trach and sometimes take it inline w/the vent. If I'm off

the vent I use a chamber when taking the MDI. I then can use Albuterol PRN (as

needed). Albuterol increases the heart rate, but it doesn't bother me since

I have a pacemaker set at 90. Lately I've been short of breath, coughing,

and using the Albuterol more frequently, so my Dr had put me on: 2-3 weeks of

steroids, then started an antibiotic when the steroids didn't entirely work

(I'd say I was at 80%, but def not baseline), increased my Advair, and ordered

the coughilater BID. I hate that machine and used to say I'll never do it

at home, so it just upsets me (physically and emotionally since was

practically attached to that thing 24/7) to have to be dependent on it, but I'll

do what I gotta do since you gotta breathe, right? We'll see how compliant I

am about the 2x's/day tho. I think this is mostly allergies eventho I had

no history of allergies in the past.

Kimi

}i{ Visit my myspace page and blogs: _www.myspace.com/ksmile96_

(http://www.myspace.com/ksmile96) }i{

" When you're gone, the pieces of my heart are missing you. When you're

gone, the face I used to know is missing too. When you're gone all the words I

need to hear to always get me thru the day and make it ok. I miss you. "

-Avril Lavigne

In a message dated 9/9/2008 2:32:50 P.M. Eastern Daylight Time,

TWEETYROLL88@... <mailto:TWEETYROLL88%40aol.com> writes:

Unlike a lot of people with SMA, I do have asthma. That is why I am on a

every day regiment of breathing treatments.

, I would try the xoponex first as DuoNeb, as it's name implies,

contains 2 medications both of which can increase your heart rate. Tobi is an

inhaled antibiotic that only treats infections in the lung, it doesn't affect

your

entire body systemically. I use it because I have lung symptoms of a CF

patient. Good luck!

MJ Purk

SMA type I+, 20 years old

“Your life is an occasion, rise to it.†~ Hoffman in Mr. Magorium's

Wonder Emporium

Ask me about B4SMA – Blankets for SMA kids, Our-SMA-Angels websites, and

Personalized Merchandise!

www.our-sma-www.our-smawww.our-sma-<WBR>angels.com/<WBR>b

www.our-sma-www.our-smawww.our-sma-<WBR>angels.c

www.cafepress.www.cafepress.<WBR>

From: Moss <_lindajmoss@... <mailto:_lindajmoss%40gmail.lin> _

(mailto:lindajmoss@... <mailto:lindajmoss%40gmail.com> ) >

_@groSMAfrie_ (mailto:

<mailto:%40> )

Sent: Sunday, September 7, 2008 4:15:29 PM

Subject: Re: Re: which bronchodilators do you all recommend?

thanks for all the great info which for me has raised more questions!

what does you mean by " in conjunction with q2 therapy " jeni?

and mj what do you mean by duoneb? and tobi?

cheers

linda

[Guest guest]

I actually learned a few semesters ago *why* some people with SMA have

asthma/RAD/COPD type symptoms eventually ;0)

Actually, the lungs start out healthy, but because of the weakened muscles

people with SMA get the lung infections that we're all familiar with. Each

infection causes a certain amount of damage and scarring is a distinct

possibility. The lungs can also lose some elasticity/pliability and that causes

even more trouble expanding.

So basically, the more respiratory infections you have, the more *other*

respiratory problems you are likely to have.

Of course, there are people who have asthma for other reasons, too. This is just

one of the explainations that my anatomy & physiology prof. gives.

 

 Love and Hugs

         Jeni

                              

[Guest guest]

Makes sense.

Kemp

Director, OurGV Rewards

<http://www.ourgvrewards.com/> http://www.ourgvrewards.com

Phone: 714-974-5799

Business Phone: 714-974-5693

Cell Phone: 714-244-5920

Phone: 949-579-9465

Email 1: d-kemp@...

Email 2: dkemp@...

<http://www.ourgvmall.com/djk> banner021.jpg

From: [mailto: ] On

Behalf Of Jenifer Woody

Sent: Tuesday, September 09, 2008 6:16 PM

Subject: Re: Re: which bronchodilators do you all recommend?

I actually learned a few semesters ago *why* some people with SMA have

asthma/RAD/COPD type symptoms eventually ;0)

Actually, the lungs start out healthy, but because of the weakened muscles

people with SMA get the lung infections that we're all familiar with. Each

infection causes a certain amount of damage and scarring is a distinct

possibility. The lungs can also lose some elasticity/pliability and that

causes even more trouble expanding.

So basically, the more respiratory infections you have, the more *other*

respiratory problems you are likely to have.

Of course, there are people who have asthma for other reasons, too. This is

just one of the explainations that my anatomy & physiology prof. gives.

Love and Hugs

Jeni

[Guest guest]

According to my neurologist, SMA does not affect the heart muscle, which is

an involuntary muscle. I personally have no heart issues either.

Vicki

SMA I/II

**************Psssst...Have you heard the news? There's a new fashion blog,

plus the latest fall trends and hair styles at StyleList.com.

(http://www.stylelist.com/trends?ncid=aolsty00050000000014)

[Guest guest]

Over the past 3 or 4 years, there have been multiple deaths of younger SMA

patients that have been caused by sudden cardiac arrest in the absence of any

other illness.

The latest thought is that SMA can affect an electrical system of some sort. I

can't remember the name of it at the moment, but Dr. Bach has been (*I think*)

the only person looking into it.

I also recently read an article that said that SMA is one of the disorders that

affect the heart in a way similar to Duchenne's, but more mildly. I'll have to

dig around to find that article, but I think it was in a quest.

 

 Love and Hugs

         Jeni

[Guest guest]

Doug,

Restrictive Airway Disease (RAD) is basically asthma, but the result of

scarring due to numerous respiratory illnesses. Not every SMAer has RAD, but

I

thought its common since many of us are highly susceptible to respiratory

infections.

I wouldn't say I have a " bad " heart since my ejection fraction is w/in

normal limits. I have an electrical problem, Sick Sinus Syndrome, in which the

SA

node or the " natural pacemaker " does not function correctly. I've have a

history of Super Ventricular Tachycardia (SVT), bradycardia, and heart block.

Since the bradycardia persisted where my HR would go as low as 29 at times, I

got a pacemaker.

Whether the heart muscle is involved w/SMA is debatable. In the past, SMA

was thought to only affect voluntary muscles, but there have been reports of

cardiac and GI (motility) problems, especially in SMA 1 patients. I believe

researchers and doctors are reassessing the rule that SMA only affects

voluntary muscles, but there has not been a lot of peer reviewed research on it

yet.

It has also been thought that the heart is affected indirectly, meaning

it's a secondary symptom. The effects of low lung function stresses the heart

out, thus causing damage.

Hope I answered your questions.

Kimi

}i{

Visit my myspace page and blogs: _ www.myspace.com/ksmile96_

(http://www.myspace.com/ksmile96) }i{

" We come to love not by finding a perfect person but by learning to see an

imperfect person perfectly " - San Keen

In a message dated 9/9/2008 7:24:49 P.M. Eastern Daylight Time,

d-kemp@... writes:

Kimi,

I don’t have restrictive airway disease and neither does my wife .

Is that common? I’ve never heard of it. You have a bad heart? Is that common

with SMAers too?

Kemp

Director, OurGV Rewards

<_http://www.ourgvrewhttp://ww_ (http://www.ourgvrewards.com/) >

_http://www.ourgvrewhttp://w_ (http://www.ourgvrewards.com/)

Phone: 714-974-5799

Business Phone: 714-974-5693

Cell Phone: 714-244-5920

Phone: 949-579-9465

Email 1: _d-kemp@..._ (mailto:d-kemp@...)

Email 2: _dkemp@..._ (mailto:dkemp@...)

<_http://www.ourgvmalhttp://ww_ (http://www.ourgvmall.com/djk) >

banner021.jpg

From: _@groSMAfrie_ (mailto: )

[mailto:_@groSMAfrie_ (mailto: ) ] On

Behalf Of _Ksmile96@..._ (mailto:Ksmile96@...)

Sent: Tuesday, September 09, 2008 3:17 PM

_@groSMAfrie_ (mailto: )

Subject: Re: Re: which bronchodilators do you all recommend?

I thought many SMAers had restrictive airway disease, which is basically

asthma??? Like MJ, I also have asthma and am on a daily regiment of

treatments.

I take Advair (230/21) 2 puffs BID (abbrev for 2x's a day). Advair is

basically a bronchodilater plus an inhaled steroid. I use the MDI rather

than

disc b/c I have a trach and sometimes take it inline w/the vent. If I'm off

the vent I use a chamber when taking the MDI. I then can use Albuterol PRN

(as

needed). Albuterol increases the heart rate, but it doesn't bother me since

I have a pacemaker set at 90. Lately I've been short of breath, coughing,

and using the Albuterol more frequently, so my Dr had put me on: 2-3 weeks

of

steroids, then started an antibiotic when the steroids didn't entirely work

(I'd say I was at 80%, but def not baseline), increased my Advair, and

ordered

the coughilater BID. I hate that machine and used to say I'll never do it

at home, so it just upsets me (physically and emotionally since was

practically attached to that thing 24/7) to have to be dependent on it, but

I'll

do what I gotta do since you gotta breathe, right? We'll see how compliant I

am about the 2x's/day tho. I think this is mostly allergies eventho I had

no history of allergies in the past.

Kimi

}i{ Visit my myspace page and blogs: _www.myspace.}i{ Visit my m

(_http://www.myspace.http://www.m_ (http://www.myspace.com/ksmile96) ) }i{

" When you're gone, the pieces of my heart are missing you. When you're

gone, the face I used to know is missing too. When you're gone all the words

I

need to hear to always get me thru the day and make it ok. I miss you. "

-Avril Lavigne

In a message dated 9/9/2008 2:32:50 P.M. Eastern Daylight Time,

_TWEETYROLL88@TWEETYR_ (mailto:TWEETYROLL88@...)

<mailto:TWEETYROLL8mailto:TWEE> writes:

Unlike a lot of people with SMA, I do have asthma. That is why I am on a

every day regiment of breathing treatments.

, I would try the xoponex first as DuoNeb, as it's name implies,

contains 2 medications both of which can increase your heart rate. Tobi is

an

inhaled antibiotic that only treats infections in the lung, it doesn't

affect your

entire body systemically. I use it because I have lung symptoms of a CF

patient. Good luck!

MJ Purk

SMA type I+, 20 years old

“Your life is an occasion, rise to it.†~ Hoffman in Mr. Magorium's

Wonder Emporium

Ask me about B4SMA – Blankets for SMA kids, Our-SMA-Angels websites, and

Personalized Merchandise!

www.our-sma-www.our-sma-<WBwww.our-<<WB>angels.ange<WBR>

www.our-sma-www.our-sma-<WBwww.our-<<WB>angels.a

www.cafepress.www.cafepress.<WBR>

From: Moss <__lindajmoss@_lindajmo_ (mailto:_lindajmoss@...)

<mailto:_lindajmossmailto:_lmai> _ (mailto:_lindajmoss@..._

(mailto:lindajmoss@...) <mailto:lindajmoss%mailto:lind> ) >

_@ _@<WBR>_@groSMAfrie_

(mailto: ) <mailto:%mailto:SMAfriemai> )

Sent: Sunday, September 7, 2008 4:15:29 PM

Subject: Re: Re: which bronchodilators do you all recommend?

thanks for all the great info which for me has raised more questions!

what does you mean by " in conjunction with q2 therapy " jeni?

and mj what do you mean by duoneb? and tobi?

cheers

linda

[Non-text portions of this message have been removed]

*********************************<WBR>**Psssst.<WBR>..Have you heard the new

plus the latest fall trends and hair styles at StyleList.com.

(_http://www.stylelishttp://www.sthttp://www.stylehttp://ww_

(http://www.stylelist.com/trends?ncid=aolsty00050000000014) )

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

**************Psssst...Have you heard the news? There's a new fashion blog,

plus the latest fall trends and hair styles at StyleList.com.

(http://www.stylelist.com/trends?ncid=aolsty00050000000014)

[Guest guest]

Hi Kimi,

I don’t understand all of the medical terminology about your heart, But I

think I get the idea.

Thanks,

Kemp

Director, OurGV Rewards

<http://www.ourgvrewards.com/> http://www.ourgvrewards.com

Phone: 714-974-5799

Business Phone: 714-974-5693

Cell Phone: 714-244-5920

Phone: 949-579-9465

Email 1: d-kemp@...

Email 2: dkemp@...

<http://www.ourgvmall.com/djk> banner021.jpg

From: [mailto: ] On Behalf

Of Ksmile96@...

Sent: Wednesday, September 10, 2008 7:52 PM

Subject: Re: Re: which bronchodilators do you all recommend?

Doug,

Restrictive Airway Disease (RAD) is basically asthma, but the result of

scarring due to numerous respiratory illnesses. Not every SMAer has RAD, but I

thought its common since many of us are highly susceptible to respiratory

infections.

I wouldn't say I have a " bad " heart since my ejection fraction is w/in

normal limits. I have an electrical problem, Sick Sinus Syndrome, in which the

SA

node or the " natural pacemaker " does not function correctly. I've have a

history of Super Ventricular Tachycardia (SVT), bradycardia, and heart block.

Since the bradycardia persisted where my HR would go as low as 29 at times, I

got a pacemaker.

Whether the heart muscle is involved w/SMA is debatable. In the past, SMA

was thought to only affect voluntary muscles, but there have been reports of

cardiac and GI (motility) problems, especially in SMA 1 patients. I believe

researchers and doctors are reassessing the rule that SMA only affects

voluntary muscles, but there has not been a lot of peer reviewed research on it

yet.

It has also been thought that the heart is affected indirectly, meaning

it's a secondary symptom. The effects of low lung function stresses the heart

out, thus causing damage.

Hope I answered your questions.

Kimi

}i{

Visit my myspace page and blogs: _ www.myspace.com/ksmile96_

(http://www.myspace.com/ksmile96) }i{

" We come to love not by finding a perfect person but by learning to see an

imperfect person perfectly " - San Keen

In a message dated 9/9/2008 7:24:49 P.M. Eastern Daylight Time,

d-kemp@... <mailto:d-kemp%40sbcglobal.net> writes:

Kimi,

I don’t have restrictive airway disease and neither does my wife .

Is that common? I’ve never heard of it. You have a bad heart? Is that common

with SMAers too?

Kemp

Director, OurGV Rewards

<_http://www.ourgvrewhttp://ww_ <http://www.ourgvrewhttp:/ww_>

(http://www.ourgvrewards.com/) >

_http://www.ourgvrewhttp://w_ <http://www.ourgvrewhttp:/w_>

(http://www.ourgvrewards.com/)

Phone: 714-974-5799

Business Phone: 714-974-5693

Cell Phone: 714-244-5920

Phone: 949-579-9465

Email 1: _d-kemp@... <mailto:_d-kemp%40sbcglobal.d-k> _

(mailto:d-kemp@... <mailto:d-kemp%40sbcglobal.net> )

Email 2: _dkemp@... <mailto:_dkemp%40ourgvrewards.dke> _

(mailto:dkemp@... <mailto:dkemp%40ourgvrewards.com> )

<_http://www.ourgvmalhttp://ww_ <http://www.ourgvmalhttp:/ww_>

(http://www.ourgvmall.com/djk) >

banner021.jpg

From: _@groSMAfrie_ (mailto:

<mailto:%40> )

[mailto:_@groSMAfrie_ (mailto:

<mailto:%40> ) ] On

Behalf Of _Ksmile96@... <mailto:_Ksmile96%40aol.Ksm> _

(mailto:Ksmile96@... <mailto:Ksmile96%40aol.com> )

Sent: Tuesday, September 09, 2008 3:17 PM

_@groSMAfrie_ (mailto:

<mailto:%40> )

Subject: Re: Re: which bronchodilators do you all recommend?

I thought many SMAers had restrictive airway disease, which is basically

asthma??? Like MJ, I also have asthma and am on a daily regiment of

treatments.

I take Advair (230/21) 2 puffs BID (abbrev for 2x's a day). Advair is

basically a bronchodilater plus an inhaled steroid. I use the MDI rather

than

disc b/c I have a trach and sometimes take it inline w/the vent. If I'm off

the vent I use a chamber when taking the MDI. I then can use Albuterol PRN

(as

needed). Albuterol increases the heart rate, but it doesn't bother me since

I have a pacemaker set at 90. Lately I've been short of breath, coughing,

and using the Albuterol more frequently, so my Dr had put me on: 2-3 weeks

of

steroids, then started an antibiotic when the steroids didn't entirely work

(I'd say I was at 80%, but def not baseline), increased my Advair, and

ordered

the coughilater BID. I hate that machine and used to say I'll never do it

at home, so it just upsets me (physically and emotionally since was

practically attached to that thing 24/7) to have to be dependent on it, but

I'll

do what I gotta do since you gotta breathe, right? We'll see how compliant I

am about the 2x's/day tho. I think this is mostly allergies eventho I had

no history of allergies in the past.

Kimi

}i{ Visit my myspace page and blogs: _www.myspace.}i{ Visit my m

(_http://www.myspace.http://www.m_ <http://www.myspace.http:/www.m_>

(http://www.myspace.com/ksmile96) ) }i{

" When you're gone, the pieces of my heart are missing you. When you're

gone, the face I used to know is missing too. When you're gone all the words

I

need to hear to always get me thru the day and make it ok. I miss you. "

-Avril Lavigne

In a message dated 9/9/2008 2:32:50 P.M. Eastern Daylight Time,

_TWEETYROLL88@TWEETYR_ (mailto:TWEETYROLL88@...

<mailto:TWEETYROLL88%40aol.com> )

<mailto:TWEETYROLL8mailto:TWEE> writes:

Unlike a lot of people with SMA, I do have asthma. That is why I am on a

every day regiment of breathing treatments.

, I would try the xoponex first as DuoNeb, as it's name implies,

contains 2 medications both of which can increase your heart rate. Tobi is

an

inhaled antibiotic that only treats infections in the lung, it doesn't

affect your

entire body systemically. I use it because I have lung symptoms of a CF

patient. Good luck!

MJ Purk

SMA type I+, 20 years old

“Your life is an occasion, rise to it.†~ Hoffman in Mr. Magorium's

Wonder Emporium

Ask me about B4SMA – Blankets for SMA kids, Our-SMA-Angels websites, and

Personalized Merchandise!

www.our-sma-www.our-sma-<WBwww.our-<<WB>angels.ange<WBR>

www.our-sma-www.our-sma-<WBwww.our-<<WB>angels.a

www.cafepress.www.cafepress.<WBR>

From: Moss <__lindajmoss@_lindajmo_ (mailto:_lindajmoss@...

<mailto:_lindajmoss%40gmail.lin> )

<mailto:_lindajmossmailto:_lmai> _ (mailto:_lindajmoss@...

<mailto:_lindajmoss%40gmail.lin> _

(mailto:lindajmoss@... <mailto:lindajmoss%40gmail.com> )

<mailto:lindajmoss%mailto:lind> ) >

_@_@<WBR>_@groSMAfrie_

(mailto: <mailto:%40> )

<mailto:%mailto:SMAfriemai> )

Sent: Sunday, September 7, 2008 4:15:29 PM

Subject: Re: Re: which bronchodilators do you all recommend?

thanks for all the great info which for me has raised more questions!

what does you mean by " in conjunction with q2 therapy " jeni?

and mj what do you mean by duoneb? and tobi?

cheers

linda

[Guest guest]

Do others use pulmicort when ill? It sounds good but the lit on it says not

to use it when ill because it weakens immune system. Just trying to decide

if I should try it since I am currently ill. :-(

On 9/7/08 12:14 AM, " Jenifer Woody " <mom2armybratz@...> wrote:

> h's arsenal for respiratory illnesses includes 3 meds. Her

> bronchodilator is xopenex, and we use pulmicort (an inhaled steroid) and

> pulmozyme (enzymes to break down thick/sticky junk in the lungs) as a

> second level. General protocol is to use the pulmicort daily, but h has

> had success with only using it when sick. If she had any sort of deterioration

> of her pumonary function, though, we would move to daily use. We've also

> discussed the prospect of using hypertonic saline nebs. Her pulmo has agreed

> that when/if she has a pneumonia requiring hospitalization we will try it.  

>  

>  Love and Hugs

>          Jeni

>                               

>

> which bronchodilators do you all recommend?

>

> just preparing my medicine box for autumn after a very dreary summer here in

> england!

>

> my ventolin bronchodilator is passed its use by date so i need something new

> for my nebuliser. i was wondering which bronchodialator anyone could

> recommend, especially in terms of not making the heart beat faster!

>

> also wondering if there was anything new out there to help our airways cope

> with respiratory infections.

>

> cheers

> linda

>

>