1. < MAC & Bronchiectasis

Bronchiectasis: New Diagnosis

Posted by navylady @navylady, Jul 26, 2018

New to your group. Non-smoker. Pneumonia x6 in 12 years, double pneumonia twice. Was diagnosed with chronic bronchitis and COPD for past 15 years, now pulmonologist based on x-rays and MRI has diagnosed no COPD, yes bronchiectasis. Take advair 250/50 twice a day. Past ten days I am increasingly gurgling, wheezing, some chest pain. I have recently moved to Florida which I like but am having long wait times to get into see a family care NP who can hopefully refer me to a pulmonologist. I walk 20-30 minutes a day. Any ideas how to manage this now. Am worried about getting pneumonia again. I went to one walk-in clinic at a reputable hospital. They literally did nothing except take x-rays. Didn't even talk to me. Just billed $2000+ for x-rays. Do I try another walk-in clinic. I feel very alone right now with this chronic medical problem.

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ginak | @ginak | Apr 2, 2019
In reply to @sueinmn "Ventolin is albuterol. It is not a steroid, and not addictive. As several have mentioned, using..." + (show)
@sueinmn

Ventolin is albuterol. It is not a steroid, and not addictive. As several have mentioned, using an albuterol, levalbuterol or similar neb regularly helps relax the bronchial passages so that other meds (like Tobramycin for pseudomonas or Breo) penetrate the lungs more effectively, and so that breathing therapy to get rid of mucus (saline, Acapela device, etc) work better. Th e nebulised solution is more effective, but if all you have is the inhaler, use that. If Ventolin, or plain albuterol makes you so shaky that you refuse to use it except in an emergency, ask your doctor for levalbuterol neb and inhaler. Brand name is Xopenex, and it was often not covered because it was expensive, but a generic form is now available. For me levalbuterol not only means less tremors, but it does not seem to raise my heart rate or blood pressure as much as albuterol.

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My Dr switched my Ventolin to Atrovent due to palpitations. You could try that.

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tdrell | @tdrell | Apr 2, 2019

All folks using albuterol inhalors....when I was treated at an urgent care in February for bronchitis...the Nurse Practitioner told me to wait 10 to 15 minutes between first inhalation and second....I
She also said to use a spacer....more of medication gets into lungs vs mouth. You can make own spacer with empty toilet paper roll. Tdrell

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2 replies
migizii | @migizii | Apr 2, 2019
In reply to @tdrell "@migizii...go for it...the NJH conference....it is all day..cost is $25 total. It includes a delicious breakfast..." + (show)
@tdrell

@migizii...go for it...the NJH conference....it is all day..cost is $25 total. It includes a delicious breakfast and lunch and great speakers. Go to NationalJewish.org.....in search bar...type “2019 NTM Lecture Series for Patients and Families” scroll down .... having son live there is a great convenience....I have attended for 3 years and always learn soooo much.tdrell

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I will definitely check into it! Thx for the info!😍

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Merry, Alumni Mentor | @merpreb | Apr 3, 2019
In reply to @tdrell "All folks using albuterol inhalors....when I was treated at an urgent care in February for bronchitis...the..." + (show)
@tdrell

All folks using albuterol inhalors....when I was treated at an urgent care in February for bronchitis...the Nurse Practitioner told me to wait 10 to 15 minutes between first inhalation and second....I
She also said to use a spacer....more of medication gets into lungs vs mouth. You can make own spacer with empty toilet paper roll. Tdrell

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@tdrell- Recently that was changed to 1 minute between each inhale. It's been like that for a couple of years. I learned that at Pulmonary Rehab last year. Always use a spacer. It's a pain, I know but when you have more than 1 inhaler it's wait and inhale, wait and inhale. lol Please do not use cardboard. It's been int he bathroom, right next to a toilet. Get the real thing. Hopefully @tdrell you are doing well.

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tdrell | @tdrell | Apr 3, 2019

@merpreb thanks for clarifying re to wait one minute between doses of inhalers vs 10 to 15 minutes that l was told in February by the NP. I just double checked some sites online and they say one minute....l must admit after 30 years of waiting one minute....l felt 15 minutes worked better....

I mentioned use of toilet paper holder as something if regular spacer not available/affordable.....l heard read or heard this years ago but the negative aspects to this as you wrote are strong!! tis good to have discussions over this...terri aka tdrell

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 3, 2019
In reply to @tdrell "All folks using albuterol inhalors....when I was treated at an urgent care in February for bronchitis...the..." + (show)
@tdrell

All folks using albuterol inhalors....when I was treated at an urgent care in February for bronchitis...the Nurse Practitioner told me to wait 10 to 15 minutes between first inhalation and second....I
She also said to use a spacer....more of medication gets into lungs vs mouth. You can make own spacer with empty toilet paper roll. Tdrell

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@tdrell, Ah Terri....I went to do this instruction of waiting before the next inhalation, and I got side-tracked in the bathroom; then left without doing the second one!

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1 reply
tdrell | @tdrell | Apr 3, 2019
In reply to @windwalker "@tdrell, Ah Terri....I went to do this instruction of waiting before the next inhalation, and I..." + (show)
@windwalker

@tdrell, Ah Terri....I went to do this instruction of waiting before the next inhalation, and I got side-tracked in the bathroom; then left without doing the second one!

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@windwalker Terri....l would have forgotten but....l had on smart phone timer the 15 minutes set and was reminded when it went off....otherwise at least 50 percent of time l would have forgotten second dose.....terri aka tdrell

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Dee | @danielad | Apr 4, 2019
In reply to @merpreb "@tdrell- Recently that was changed to 1 minute between each inhale. It's been like that for..." + (show)
@merpreb

@tdrell- Recently that was changed to 1 minute between each inhale. It's been like that for a couple of years. I learned that at Pulmonary Rehab last year. Always use a spacer. It's a pain, I know but when you have more than 1 inhaler it's wait and inhale, wait and inhale. lol Please do not use cardboard. It's been int he bathroom, right next to a toilet. Get the real thing. Hopefully @tdrell you are doing well.

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@merpreb, @tdrell - Ladies, what is a "spacer"?

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Merry, Alumni Mentor | @merpreb | Apr 4, 2019

Dee- A spacer in a contraption to use with your inhaler. "Spacers should always be used with MDIs that deliver inhaled corticosteroids. Spacers can make it easier for medication to reach the lungs, and also mean less medication gets deposited in the mouth and throat, where it can lead to irritation and mild infections."
This is almost like the one I use: https://www.google.com/search?q=spacer+for+inhaler&safe=active&source=lnms&tbm=isch&sa=X&ved=0ahUKEwiE4cLpi7fhAhWkVN8KHay3CL0Q_AUIDygC&biw=1366&bih=613#imgrc=IiAmTbPbUarnHM:

The way you have to inhale is different than when you use just your mouth

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tdrell | @tdrell | Apr 4, 2019

@danielad...Dee...to add toMerry’s great response to your question “ what is a spacer?”.....it can also be used for other types of inhalers ....I use for bronchodilator ventolin. Terri tdrell

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