Re: Thanks for all the info!

[Guest guest]

A wonderful ENT told me that most people don't take enough Mucinex to make a difference. Others in this group can tell you how much they take to be effective. The OTC doses aren't nearly high enough to do the job. Likewise with the vest questions. We have some real experts on this subject!

Kay

Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

[Guest guest]

Sharyn, I use the Vest and found that the original prescribed strength was doing

me very little, if any, good at all. My St Louis pulmonologist told me to play

around with it - said he'd never heard of anyone being harmed by it. I now do

it at Level 17hz and pressure 7 and it loosens up stuff much better.

I take the 1200 mg plain Mucinex once daily, and I use gualfenesin liquid (ask

your pharmacist - it should be over the counter) as needed throughout the day.

For me " needed " means a non-productive cough.

Suzanne

[Guest guest]

How come we cannot buy Mucinex in Queensland? I have tried.Pam

A wonderful ENT told me that most people don't take enough Mucinex to make a difference. Others in this group can tell you how much they take to be effective. The OTC doses aren't nearly high enough to do the job. Likewise with the vest questions. We have some real experts on this subject!Kay Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

[Guest guest]

Sharyn,

 yes:  use vest every day.  I got a bit slack, missed the odd day feeling SO GOOD !!   oh oh.  not good.  Back to daily.  Short and effective or whatever but just DO IT is what I've found I need to do to prevent infx (infection) from building up.  I have several varieties of Pseudomonas which played merry hell with my life for quite some years.  Thx to nebs and SmartVest I now have a winning hand in the game!  After 50++ yrs of bronch & infx 2-3 times almost every year of my life - these 2 have proved so much better than abx of any kind (no matter which, how long, how many I had dark green sputum within 2-3 days) NOT fair!  I still get darkish stuff but can keep going til is clear and transparent consistency, then I know I'm ahead.I hope this can help anyone in this tussle between the bugs in us, and us bugging the bugs!cheers, Joy (from Oz)"We only need to breathe gently for the miracle to be revealed: birds singing, flowers blooming, the blue sky, the white cloud floating, .....  "      Thich Nhat Hanh

[Guest guest]

It probably has a different name. The other Aussies can clue you in on this . Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

[Guest guest]

Sharyn-What nebulizer treatment do you use, I mean besides any albuterol? Have you ever used anything other than albuterol, plus the anti biotics? Kris

Subject: Re: good for lungs, digestion - NOT reflux!To: bronchiectasis Date: Tuesday, February 15, 2011, 9:46 PM

Thank you for the information. That is very interesting about being tested for CF. How is that done?

Cindi W

To: bronchiectasis Sent: Mon, February 14, 2011 9:04:11 AMSubject: Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told

them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor

can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in

bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

[Guest guest]

I have never used a nebulizer - no Dr. has ever mentioned it to me. I am so thrilled to get all this information. We are in the south for the winter and as soon as we get home, I am going to get one or perhaps I can get started here? Do you have to have a Dr.'s prescription or can you just buy one on your own, etc. talk to the pharmacist and get the solution? I wish I would of found this website years ago. Thank you, Thank you, I am feeling there is hope yet.

Sharyn

To: bronchiectasis Sent: Thu, February 17, 2011 1:08:17 PMSubject: Re: Thanks for all the info!

Sharyn-What nebulizer treatment do you use, I mean besides any albuterol? Have you ever used anything other than albuterol, plus the anti biotics? Kris

Subject: Re: good for lungs, digestion - NOT reflux!To: bronchiectasis Date: Tuesday, February 15, 2011, 9:46 PM

Thank you for the information. That is very interesting about being tested for CF. How is that done?

Cindi W

To: bronchiectasis Sent: Mon, February 14, 2011 9:04:11 AMSubject: Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told

them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor

can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in

bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

[Guest guest]

Oh Yes, Mr FDA is always going to require the prescription. My son got a neb machine years ago from a home health care service, but I know most people get a script from their docs and then you can sometimes find them at a Walgreens or something like that. Do you maintain a doctor relationship in the South? I know that most medical devices companies sell them if you cannot find one @ your local pharmacy. Maybe just ask your local pharmacist about buying one, but they are probably not cheap, if you are a sell-pay patient.Also, there is not a medicine that my son has ever put into said nebulizer that has not been a prescription medication. There's little choice but to see a doctor, and if that dr looks at you like you have no idea about treating your disease, maybe look for a 2nd opinion. I know this is

complicated, but once you are breathing easy, you will likely be so grateful. Good Luck! Kris

Subject: Re: good for lungs, digestion - NOT reflux!To: bronchiectasis Date: Tuesday, February 15, 2011, 9:46 PM

Thank you for the information. That is very interesting about being tested for CF. How is that done?

Cindi W

To: bronchiectasis Sent: Mon, February 14, 2011 9:04:11 AMSubject: Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told

them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor

can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in

bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

[Guest guest]

You can buy a nebulizer on Amazon and many other places, without a prescription,

but you will need a prescription for any of the inhaled meds one might use in

such. I particularly like the Respironics MiniElite

<http://www.amazon.com/Respironics-RDD483-Battery-Pack/dp/B0041504F6/ref=sr_1_1?\

ie=UTF8 & s=hpc & qid=1297984982 & sr=8-1>. I like its VERY small size - will easily

fit in checked luggage on a plane, and going through airport security with one

is always a hassle and a challenge. I love having the optional battery back -

can use it lots of places without having to find a plug. Mine also came with a

car plug so I can use it while driving down the highway.

I much prefer using a face mask with my nebulizer - it leaves me hands-free -

I'm doing my Vest and nebulizer treatments as I type this email! One can find

these online at lots of different places - just bought a bunch of masks from

Allergy Be Gone - good prices and fast shipping.

Your insurance may pay for a nebulizer but then your doctor would have to write

a prescription and submit it to your insurance company and you'd then have to

get the one they offer. I did that with my first one - it was bulky and a HUGE

nuisance when traveling, so I later bought the small MiniElite off of Amazon and

just paid for it myself - much less hassle.

There are many different meds that are used in a nebulizer. For years, I used

Pulmicort (an inhaled steroid) and Xopenex, a from of albuteral which helps open

airways. I now use the Xopenex in an inhaler form with an extender - much

faster to do two puffs than 15-20 minutes using the neb. I was able to mix the

Pulmicort and Xopenex in the cup of the nebulizer, but Xopenex cannot be mixed

with my HyperSal inhaled saline and I don't want to have to do multiple

nebulizer treatments.

You do need to talk to your pulmonologist about the possibility of using inhaled

saline in a nebulizer. Call him from your winter vacation place and ask him

what he thinks about this, and if he's willing, to write you a prescription for

the saline. Then you can buy your own nebulizer and have it sent to where you

are. He should be able to give you a VERY good reason for being unwilling to do

this - it's a standard treatment aid for bronchiectasis.

Suzanne

[Guest guest]

Suzanne - thank you for all the info on the nebulizer. I do not have a relationship with a Dr. here in the South, but I will call my Dr. at home and see if I can get him to write a prescription for everything needed to start. I really feel this will help. We will be back to Iowa at the end of March so may have to wait until then. I wish I had found this website years ago as I am getting so much more information than I have been able to find anywhere.

Not sure I understand what the pseudomonas are. Do they test you for that? At Mayo they told me I had cylindrical bronchiectasis. Since May of last year I can feel in my chest that it has progressed as I feel mucus coming up from different areas of my lungs, plus I am having so much more.

Again, thank you for the information.

To: bronchiectasis Sent: Thu, February 17, 2011 5:34:19 PMSubject: Re: Thanks for all the info!

You can buy a nebulizer on Amazon and many other places, without a prescription, but you will need a prescription for any of the inhaled meds one might use in such. I particularly like the Respironics MiniElite <http://www.amazon.com/Respironics-RDD483-Battery-Pack/dp/B0041504F6/ref=sr_1_1?ie=UTF8 & s=hpc & qid=1297984982 & sr=8-1>. I like its VERY small size - will easily fit in checked luggage on a plane, and going through airport security with one is always a hassle and a challenge. I love having the optional battery back - can use it lots of places without having to find a plug. Mine also came with a car plug so I can use it while driving down the highway. I much prefer using a face mask with my nebulizer - it leaves me hands-free - I'm doing my Vest and nebulizer treatments as I type this email! One can find these online at lots of different places - just bought a bunch of masks from Allergy Be Gone - good prices and fast

shipping.Your insurance may pay for a nebulizer but then your doctor would have to write a prescription and submit it to your insurance company and you'd then have to get the one they offer. I did that with my first one - it was bulky and a HUGE nuisance when traveling, so I later bought the small MiniElite off of Amazon and just paid for it myself - much less hassle.There are many different meds that are used in a nebulizer. For years, I used Pulmicort (an inhaled steroid) and Xopenex, a from of albuteral which helps open airways. I now use the Xopenex in an inhaler form with an extender - much faster to do two puffs than 15-20 minutes using the neb. I was able to mix the Pulmicort and Xopenex in the cup of the nebulizer, but Xopenex cannot be mixed with my HyperSal inhaled saline and I don't want to have to do multiple nebulizer treatments.You do need to talk to your pulmonologist about the possibility of using inhaled saline

in a nebulizer. Call him from your winter vacation place and ask him what he thinks about this, and if he's willing, to write you a prescription for the saline. Then you can buy your own nebulizer and have it sent to where you are. He should be able to give you a VERY good reason for being unwilling to do this - it's a standard treatment aid for bronchiectasis.Suzanne

[Guest guest]

http://en.wikipedia.org/wiki/Pseudomonas_aeruginosa

Yes, a sputum test is done for this - it is very common in CF and bronchiectasis

patients, and one never totally gets rid of it.

Suzanne

[Guest guest]

Sharyn-- I just read your last entry w/ great interest! How long ago were you diagnosed w/ Cylindrical Bronchiectasis?? My son was just diagnosed 18mos w/ the same form of disease @ Mayo.I wonder what type of treatment you have been doing since the diagnosis, since you have never used a nebulizer. That is protocol for bronchiectasis. Does your own pulmonologist back in Iowa have alot of experience w/ this disease? Many drs see it as a disease that can be treated the same as COPD..If you have a lot more mucous, maybe try asking your dr if he can prescribe Pulmozyme. That's what has kept my son's disease at bay. It will actually attack the DNA that makes the mucous in your lungs! It's a beautiful treatment! Once a day nebulizer treatment, no outward side effects. The cure rate on

this drug even shocked his Mayo dr! NOW he is stuck doing the 2x a day Hypo tonic Saline, because it's about $2200 per month cheaper. If you have a CF diagnosis, you can get the Pulmozyme, if not its the Hypo tonic Saline for you, too. The side effects on this one are already showing in my son: sore throat, uncontrollable coughing. He had not coughed in almost 2yrs. I actually forgot what his cough sounded like! I was under the impression that we were well on our way to have him cured soon. That's the 'Cylindrical' diagnosis, by definition, it is reverse-able. I hope you can find the best treatment for you and hopefully you are going to be able to better clear your lungs. That's where the nebulizer comes in, trust me!Do you have a pulmonology dr in TX? That may be your next step, one in Iowa and one in TX. We have a pulm dr in Orlando, FL , one @ Mayo Clinic in Rochester, Mn

and a back-up pulm specialist in Rockford, IL. where a lot of our family lives. We don't leave home w/ out one of them near where we are going! Just a thought.. If you travel a lot like we tend to do. or if you opt to live in more than one place, it's optimum to have drs in a few different spots! Also it's great to have a few well-trained minds to bounce things off of! We get advice from several drs all the time. We love when they ALL agree, if they don't we tend to lean toward what the Mayo drs tell us to do. Happy Spring! KrisSubject: Re: Thanks for all the info!To: bronchiectasis Date: Friday, February 18, 2011, 11:38

AM

Suzanne - thank you for all the info on the nebulizer. I do not have a relationship with a Dr. here in the South, but I will call my Dr. at home and see if I can get him to write a prescription for everything needed to start. I really feel this will help. We will be back to Iowa at the end of March so may have to wait until then. I wish I had found this website years ago as I am getting so much more information than I have been able to find anywhere.

Not sure I understand what the pseudomonas are. Do they test you for that? At Mayo they told me I had cylindrical bronchiectasis. Since May of last year I can feel in my chest that it has progressed as I feel mucus coming up from different areas of my lungs, plus I am having so much more.

Again, thank you for the information.

To: bronchiectasis Sent: Thu, February 17, 2011 5:34:19 PMSubject: Re: Thanks for all the info!

You can buy a nebulizer on Amazon and many other places, without a prescription, but you will need a prescription for any of the inhaled meds one might use in such. I particularly like the Respironics MiniElite <http://www.amazon.com/Respironics-RDD483-Battery-Pack/dp/B0041504F6/ref=sr_1_1?ie=UTF8 & s=hpc & qid=1297984982 & sr=8-1>. I like its VERY small size - will easily fit in checked luggage on a plane, and going through airport security with one is always a hassle and a challenge. I love having the optional battery back - can use it lots of places without having to find a plug. Mine also came with a car plug so I can use it while driving down the highway. I much prefer using a face mask with my nebulizer - it leaves me hands-free - I'm doing my Vest and nebulizer treatments as I type this email! One can find these online at lots of different places - just bought a bunch of masks from Allergy Be Gone - good prices and fast

shipping.Your insurance may pay for a nebulizer but then your doctor would have to write a prescription and submit it to your insurance company and you'd then have to get the one they offer. I did that with my first one - it was bulky and a HUGE nuisance when traveling, so I later bought the small MiniElite off of Amazon and just paid for it myself - much less hassle.There are many different meds that are used in a nebulizer. For years, I used Pulmicort (an inhaled steroid) and Xopenex, a from of albuteral which helps open airways. I now use the Xopenex in an inhaler form with an extender - much faster to do two puffs than 15-20 minutes using the neb. I was able to mix the Pulmicort and Xopenex in the cup of the nebulizer, but Xopenex cannot be mixed with my HyperSal inhaled saline and I don't want to have to do multiple nebulizer treatments.You do need to talk to your pulmonologist about the possibility of using inhaled saline

in a nebulizer. Call him from your winter vacation place and ask him what he thinks about this, and if he's willing, to write you a prescription for the saline. Then you can buy your own nebulizer and have it sent to where you are. He should be able to give you a VERY good reason for being unwilling to do this - it's a standard treatment aid for bronchiectasis.Suzanne

[Guest guest]

MUCINEX is a liquid or tablet medicine taken in oral form ?? Haven't

heard of it in Aus

joy (Aus)

[Guest guest]

I can't say for US, but DO know that in Aus that nebulisers, the

meds for it etc need prescription. I suppose you COULD do it without

but you'd really need to know what you're doing, plus it's much more

expensive for us.

joy (Aus)

[Guest guest]

I have several forms of Pseudomonas - did lot of research when I

found out, kept the info so anyone wanting I can send as pdf to

private emails - but wait til I get back early March.

cheers,

joy

[Guest guest]

Joy will you please send me this info too jlsale2@...

Subject: Re: Thanks for all the info!To: bronchiectasis Date: Sunday, February 20, 2011, 7:23 AM

I have several forms of Pseudomonas - did lot of research when I found out, kept the info so anyone wanting I can send as pdf to private emails - but wait til I get back early March.cheers,joy

[Guest guest]

Suzanne - thank you for this valuable information about nebulizers. I have forwarded it to my AOL email and will research this as soon as I get a prescription, etc. and get started. I will let you know when I start using it. I've started using the Vest at higher levels as you mentioned you did 17 hz and pressure 7. I normally have been doing 9 hz, pressure 5. I'm just off of levaquin so am feeling really good right now. ......but know it won't last. Sharyn

To: bronchiectasis Sent: Thu, February 17, 2011 5:34:19 PMSubject: Re: Thanks for all the info!

You can buy a nebulizer on Amazon and many other places, without a prescription, but you will need a prescription for any of the inhaled meds one might use in such. I particularly like the Respironics MiniElite <http://www.amazon.com/Respironics-RDD483-Battery-Pack/dp/B0041504F6/ref=sr_1_1?ie=UTF8 & s=hpc & qid=1297984982 & sr=8-1>. I like its VERY small size - will easily fit in checked luggage on a plane, and going through airport security with one is always a hassle and a challenge. I love having the optional battery back - can use it lots of places without having to find a plug. Mine also came with a car plug so I can use it while driving down the highway. I much prefer using a face mask with my nebulizer - it leaves me hands-free - I'm doing my Vest and nebulizer treatments as I type this email! One can find these online at lots of different places - just bought a bunch of masks from Allergy Be Gone - good prices and fast

shipping.Your insurance may pay for a nebulizer but then your doctor would have to write a prescription and submit it to your insurance company and you'd then have to get the one they offer. I did that with my first one - it was bulky and a HUGE nuisance when traveling, so I later bought the small MiniElite off of Amazon and just paid for it myself - much less hassle.There are many different meds that are used in a nebulizer. For years, I used Pulmicort (an inhaled steroid) and Xopenex, a from of albuteral which helps open airways. I now use the Xopenex in an inhaler form with an extender - much faster to do two puffs than 15-20 minutes using the neb. I was able to mix the Pulmicort and Xopenex in the cup of the nebulizer, but Xopenex cannot be mixed with my HyperSal inhaled saline and I don't want to have to do multiple nebulizer treatments.You do need to talk to your pulmonologist about the possibility of using inhaled saline

in a nebulizer. Call him from your winter vacation place and ask him what he thinks about this, and if he's willing, to write you a prescription for the saline. Then you can buy your own nebulizer and have it sent to where you are. He should be able to give you a VERY good reason for being unwilling to do this - it's a standard treatment aid for bronchiectasis.Suzanne