1. < MAC & Bronchiectasis

Bronchiectasis what are the stages and symptoms

Posted by raney @raney, Oct 18, 2021

I was diagnosed with bronchiectasis about the time that Covid hit the US and the pulmonologist are overworked, so I have lots of unanswered questions. I also am taking Bisoprolol Fumarate 2.5 mg (a beta blocker) for heart issues. This is the 3rd cardiac med that has been prescribed in hopes of finding something that works with heart and does not interact with pulmonary meds.
Is there away to shorten the time of treatment?
1. Will I have to spend 3 hours 2 X a day for the rest of my life with nebulizer treatments, smart vest, gargles and nasal washes?
2. Is there anyway to shorten the time of nebulizer. (I have been prescribed (a) Levalbuterol which I can not use because it makes breathing more difficult (b) Sodium Chloride 7% (c) Budesonide all by nebulizer.
I use Aerobika and Smart Vest at intervals during nebulizer treatment.

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raney | @raney | Oct 22, 2021
In reply to @alleycatkate "Yikes..@raney ! You are being seen by just an NP and the Pulmo will not see..." + (show)
@alleycatkate

Yikes..@raney ! You are being seen by just an NP and the Pulmo will not see you without a written request? If I were you I would be looking for a Pulmonologist that cared for his/her patients. Sorry to be so blunt and to put in my 2 cents ..but sounds as though you are just being shuffled around and not getting good care or even the attention from the Doc. I would be running, not walking from this.

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Thank you so much for your honest response. I have been thinking the same thing. I am going to work on it. Thanks.

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rits | @rits | Oct 22, 2021
In reply to @alleycatkate "Yikes..@raney ! You are being seen by just an NP and the Pulmo will not see..." + (show)
@alleycatkate

Yikes..@raney ! You are being seen by just an NP and the Pulmo will not see you without a written request? If I were you I would be looking for a Pulmonologist that cared for his/her patients. Sorry to be so blunt and to put in my 2 cents ..but sounds as though you are just being shuffled around and not getting good care or even the attention from the Doc. I would be running, not walking from this.

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Goodness Raney I agree with alleycatkate. I think you are a nice person and perhaps they took advantage of your niceness.

I am not nice and would have demanded a piece of paper and would have written right then and there that I insist on seeing the DOCTOR WHATEVER that I made the appointment to see and not a substitute.

The nerve of the practice to assign your treatment to a nurse practitioner. I don't mean any disrespect to np"s and they are mostly wonderful in what they do. But this disease is serious, you have a mess of special issues and you should be treated by a doctor.

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2 replies
alleycatkate | @alleycatkate | Oct 22, 2021
In reply to @rits "Goodness Raney I agree with alleycatkate. I think you are a nice person and perhaps they..." + (show)
@rits

Goodness Raney I agree with alleycatkate. I think you are a nice person and perhaps they took advantage of your niceness.

I am not nice and would have demanded a piece of paper and would have written right then and there that I insist on seeing the DOCTOR WHATEVER that I made the appointment to see and not a substitute.

The nerve of the practice to assign your treatment to a nurse practitioner. I don't mean any disrespect to np"s and they are mostly wonderful in what they do. But this disease is serious, you have a mess of special issues and you should be treated by a doctor.

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@rits Amen, sister! Well said! (I was biting my tongue) @raney ...where do you live? Are you near any Mayo Clinics? Speaking in generalities....but they seem to offer excellent guidance and treatment. Since this is not a run-of-the-mill disease, it is often difficult to nail down a good Pulmonologist that knows what they are doing or even has experience in this area of lung disease. My local Pulmo vs Mayo Clinic was a night and day experience. Get the best Doc that you can. Kate

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1 reply
raney | @raney | Oct 22, 2021
In reply to @alleycatkate "@rits Amen, sister! Well said! (I was biting my tongue) @raney ...where do you live? Are..." + (show)
@alleycatkate

@rits Amen, sister! Well said! (I was biting my tongue) @raney ...where do you live? Are you near any Mayo Clinics? Speaking in generalities....but they seem to offer excellent guidance and treatment. Since this is not a run-of-the-mill disease, it is often difficult to nail down a good Pulmonologist that knows what they are doing or even has experience in this area of lung disease. My local Pulmo vs Mayo Clinic was a night and day experience. Get the best Doc that you can. Kate

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Thank you, Kate. I live in North Carolina. Wish there was a Mayo nearby. UNC Chapel Hill is a teaching hospital. It is about 3 hours from where I live.

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raney | @raney | Oct 22, 2021
In reply to @rits "Goodness Raney I agree with alleycatkate. I think you are a nice person and perhaps they..." + (show)
@rits

Goodness Raney I agree with alleycatkate. I think you are a nice person and perhaps they took advantage of your niceness.

I am not nice and would have demanded a piece of paper and would have written right then and there that I insist on seeing the DOCTOR WHATEVER that I made the appointment to see and not a substitute.

The nerve of the practice to assign your treatment to a nurse practitioner. I don't mean any disrespect to np"s and they are mostly wonderful in what they do. But this disease is serious, you have a mess of special issues and you should be treated by a doctor.

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Thank you. This group has opened my eyes to what I was feeling and thinking.

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lorifilipek | @lorifilipek | Oct 25, 2021
In reply to @sueinmn "Wow, check out that Pari Vios "green monster" - or maybe your nebulizer cup. Mine dispenses..." + (show)
@sueinmn

Wow, check out that Pari Vios "green monster" - or maybe your nebulizer cup. Mine dispenses 4ml of saline or duoneb in about 12 minutes using the Pari LC Plus nebulizer. My old Pari (over 10 years old) took a lot longer, so I replaced it with a new one from Walgreens for about $60. By the way, Pari also has an LC Sprint cup that's supposed to be even faster - I might try it next time. I buy neb supplies on line, and replace mine about every 3 months - cup and tubing.
Sue

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Sue, I use a new Pari Vios green compressor with a new LC Sprint nebulizer. It takes me about 14 minutes to nebulize 4ml of 7% saline. Pari recently changed the design of the Sprint and it takes longer now than the old design. Also, it leaves a bit of solution in the cup at the end. 🙁

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 25, 2021
In reply to @lorifilipek "Sue, I use a new Pari Vios green compressor with a new LC Sprint nebulizer. It..." + (show)
@lorifilipek

Sue, I use a new Pari Vios green compressor with a new LC Sprint nebulizer. It takes me about 14 minutes to nebulize 4ml of 7% saline. Pari recently changed the design of the Sprint and it takes longer now than the old design. Also, it leaves a bit of solution in the cup at the end. 🙁

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That's not good! What about the Pari LC? My cups have always had a little solution at the end...probably because I am impatient.
Sue

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lorifilipek | @lorifilipek | Oct 25, 2021
In reply to @alleycatkate "@sueinmn I just switched from the Pari LC Plus neb cup to the LC Sprint...Wow. Cuts..." + (show)
@alleycatkate

@sueinmn I just switched from the Pari LC Plus neb cup to the LC Sprint...Wow. Cuts the time down to about 6 minutes....and very little medication escapes from the cup as it used to do with the LC Plus. The only difference that I notice is that the 7% seems harsher with the Sprint. (and my cats get a lot less playtime now).

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Last year with the old PARI Vios green and old LC Sprint, it took about 7 min to nebulize 4ml of 7%. Over time, the old Vios slowed down considerably and PARI sent me a new one. Also, I compared the recent Sprint cup design to my old one of last year and they are different. I first thought the slower nebulizer time (about 20 min) was due to the cup, but then I tried my old Sprint cup and it was still slow, so I called PARI and they sent me a new Vios. It only improved the time from 20 min to 14 minutes with the new Sprint cup. (I don't have any more old cups.)

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1 reply
raney | @raney | Oct 25, 2021
In reply to @lorifilipek "Last year with the old PARI Vios green and old LC Sprint, it took about 7..." + (show)
@lorifilipek

Last year with the old PARI Vios green and old LC Sprint, it took about 7 min to nebulize 4ml of 7%. Over time, the old Vios slowed down considerably and PARI sent me a new one. Also, I compared the recent Sprint cup design to my old one of last year and they are different. I first thought the slower nebulizer time (about 20 min) was due to the cup, but then I tried my old Sprint cup and it was still slow, so I called PARI and they sent me a new Vios. It only improved the time from 20 min to 14 minutes with the new Sprint cup. (I don't have any more old cups.)

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My Pari Sprint takes me about 20+ minutes

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thumperguy | @thumperguy | Oct 25, 2021

Likewise my Pari (20 minutes).

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