NTM Northwest Support

A Pacific Northwest support group for sufferers of Nontuberculous Mycobacterial (NTM) Infections and Bronchiectasis

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#1 2016-09-10 08:05:13

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 156

2nd Saturday @ 2 SEPT 10 2016

Lottie was wondering what questions to ask a new doctor.   

We need to discuss if we want to share our forum with anyone other than member NTM patients.

Also would like to ask how many folks have been offered nebulizing hypertonic saline solution as part of their treatment plan. If you have A) how often daily?  B) long term or only short term when lungs seem congested or when wheezy? C) do you also inhale albuterol to control tightness?  D) any side effects? Any comments your doc has made regarding this treatment in general...

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#2 2016-09-10 13:31:28

YoungTeacher
Member
Registered: 2016-09-10
Posts: 1

Re: 2nd Saturday @ 2 SEPT 10 2016

I use the saline solution.  I was told to do it 5 days a week by Dr. Daley at NJH, but I have slacked off mainly due to inconvenience of cleaning the devices.  I do think it helps produce sputum and I need to return to the regimen.  Not sure how long this is meant to continue.  The other part of my treatment is taking the antibiotics.

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#3 2016-09-10 13:53:13

kellyww
Member
Registered: 2016-07-06
Posts: 14

Re: 2nd Saturday @ 2 SEPT 10 2016

Hi All!  Happy September smile  Hope everyone is MUCH better than me...genetic test results due this coming week, we want NEGATIVE results...but also been having massive multiple joint issues that I never have had...hoping to strengthen the rheumatoid diagnosis...telling my friends this week I've been 'trying to die', kinda joking, but oy, living has been so very hard.  Anyway...

Lottie - https://www.ntminfo.org/patients/your-d … ur-doctors  That website is from the ntminfo.org site - q's to ask your dr...and they can then stimulate even more thoughts and questions...I usually end up with a full page, depending on what's going on at the time/situation...hope that helps and gives you a point to start with at least smile

I think keeping the site to ourselves is probably more inline with kinda what I think...there are national sites etc. but this is us, we have become comfortable with 'us', and not 'outsiders'...that may make some of us more uncomfortable to being open and honest if we were to open it up. 

Saline - It has never been recommended to me, except as a precursor to inhaled Amakacin, which I stopped when the Amak. stopped.  not really brought up since.  Dr. H wondered why I didn't do it anymore, but not enough to recommend it again...could be due to the unstable/undiagnosed nature of my situation however.

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#4 2016-09-10 14:04:09

dana b
Member
Registered: 2016-08-14
Posts: 17

Re: 2nd Saturday @ 2 SEPT 10 2016

Hi All,
I'm only on for a short time as I'm giving a fundraiser for the Missoula County Commissioner race. 
As to the saline.  I remember mentioning that in the 2 years since I was diagnosed with MAC, I hardly coughed or had sputum.  After going th NJ a few weeks ago, I was told that not getting the stuff out was contributing to my bronc illness as well as the MAC.  Keeping all the germs inside.  So they told me I had to do the aerobika with saline 2 times a day for the rest of my life.  I think if I had had more natural expectorant I could have gotten by without the saline on a 2x day basis.  But I am doing it and stuff is coming out. I feel it is really cleansing my tubes.  Some of it is brownish and they said that was because it was older and had been in there longer.  So  I'm getting it out.

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#5 2016-09-10 14:05:01

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 156

Re: 2nd Saturday @ 2 SEPT 10 2016

Do you also use a lung clearance device daily...aerobika, flutter valve or acapella?

My thoughts on ?? for new local doctor are that first you need to find out the providers' level of expertise.  OK to ask how many NTM patients currently under their care and over the length of their career.  Also where did they learn about treatment protocols... med school thirty years ago?  NJH provider educational seminars within the past decade? That gives you a reference point. This of course is not necessary if you are going to a top doc.

Don't forget that appointments are VERY short.  You need to enter their office with a written list that prioritizes your questions.  Don't waste precious time asking lifestyle questions to which there is no consensus...ie where should you live.  Use sites like this and NTMir and BronchNTM360social to help you dig into those issues. You can throw in some near the end if there is time.

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#6 2016-09-10 14:07:27

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 156

Re: 2nd Saturday @ 2 SEPT 10 2016

My previous question was for young teacher...regarding lung clearance device

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#7 2016-09-10 14:07:34

dana b
Member
Registered: 2016-08-14
Posts: 17

Re: 2nd Saturday @ 2 SEPT 10 2016

I did want to ask about whether I need to boil the Aerobika after each use or just at the end of the day?  Cynthia got me on this, as the people at the hospital said just hot soappy water for 15 minutes at the end of the day.  Also since I started boiling it, the flutter valve doesn't work as well.  I don't want to have to buy one of those every few months.  Also does anyone have a less expensive place to order them than the  $110. from the company?

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#8 2016-09-10 14:10:33

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 156

Re: 2nd Saturday @ 2 SEPT 10 2016

Also Dana if you are still with us...I use an Aerobika but it doesn't seem to have a saline option.  Is there some attachment?  When I say "nebulize saline" I have a tiny compressor that shoots air through the saline or albuterol and then I breathe in that mist.  Takes about ten minutes until a dose is done. Afterwards I use my Aerobika to shake up my bronchi.

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#9 2016-09-10 14:15:26

Nancyr
Administrator
Registered: 2016-05-30
Posts: 37

Re: 2nd Saturday @ 2 SEPT 10 2016

Dana, thanks for your info on using Aerobica plus saline even though you are not coughing much stuff up.  It is difficult to stay motivated on using the Aerobica or flutter valve daily when there seems to be no results.  However, think I should add the nebulizing saline step (with Dr. advice) to see if it will increase my drainage.   KNOW intellectually how important drainage is, but seeing no results in getting phlegm out makes me think "what is the use" and I get lazy about it.   Thanks for the motivation!    Nancy in Seattle

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#10 2016-09-10 14:16:40

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 156

Re: 2nd Saturday @ 2 SEPT 10 2016

I do not boil any of my devices.  I boil water to clean them with, but most providers say distilled water is fine. Just being picky.  The mouthpiece and medicine chamber that fits on top of my nebulizer is rather flimsy so I rinse then soak it in half vinegar/ half water solution for 20 minute. Rinse and set on paper towel til next day.  My aerobika I put in warm soapy water for 20 minute and once a week I stick it in a baby bottle sterilizer bag and zap it in the microwave for two minutes (depends on your microwaves power wattage) Get them at Target..Medela quick clean micro-steam bags. cheap, $6 buck for bundle of 5 and you can reuse each one 20 times. Goofed and put the nebulizer attachments in a micro-steam bag and they are a less durable plastic and melted out of shape.

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#11 2016-09-10 14:24:19

Lottie
Member
Registered: 2016-08-07
Posts: 15

Re: 2nd Saturday @ 2 SEPT 10 2016

Cynthia: Sharing forum? 
Who would "anyone" be?

Lottie

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#12 2016-09-10 14:26:37

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 156

Re: 2nd Saturday @ 2 SEPT 10 2016

I more or less agree with Kelly about keeping it small, however I think we should think about letting other group leaders or providers who are working on the educational aspects of NTM support to peek and see what we have going, especially after we have a few more chats under our belts.  As an administrator, Nancy or I can kick people off at anytime. So if I see an unregistered viewer I can block them unless I know it's someone I've told it's ok to peek.

One thing I've learned from the PCORI experiences is that it is really important that mdedical providers and researchers broaden their view of us.  They need to know what concerns us. And it might be a way some groups want to branch out or adapt their organizations. I know the gals at NTMir would be very intrigued by what we are doing.  Think of all the patients out there that cannot get to a major city for face-to-face support.

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#13 2016-09-10 14:28:02

Lottie
Member
Registered: 2016-08-07
Posts: 15

Re: 2nd Saturday @ 2 SEPT 10 2016

Has anyone viewed the Bronch360social.org site?  If yes, do you have any comments?

Lottie

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#14 2016-09-10 14:29:11

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 156

Re: 2nd Saturday @ 2 SEPT 10 2016

since we don't advertise the only folks who would find us by random would be people doing deep searches for info on NTM support. I'm thinking more about members telling their own doctors about the forum or telling NTMir or sharing it with other NTM support groups leaders...just for a look.  I do not want to open it to members of other support groups.

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#15 2016-09-10 14:33:17

kellyww
Member
Registered: 2016-07-06
Posts: 14

Re: 2nd Saturday @ 2 SEPT 10 2016

re the nebulize saline (used with my big nebulizer, that I would use for the Amakicin, and albeuterol) - I would vinegar wash once a week - soak in 50:50 vinegar/distilled water for 30 minutes and then wash with warm soapy water after, air dry.  All the mouth pieces, air exhaust tube for the nebulizing part, pretty much all but the long skinny air tube and obviously the machine.  That I replaced once a month through insurance, as it was disposable.  (just fyi - the Amakacin is a thicker stickier liquid, and took different neb mouth pieces that the cheap ol ones, still washed the same, and I think they were to be on a 6 month replacement protocol...ins still covered, just more expensive.)

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#16 2016-09-10 14:34:47

Lottie
Member
Registered: 2016-08-07
Posts: 15

Re: 2nd Saturday @ 2 SEPT 10 2016

Cynthia: sharing forum
I support your comments: ... members telling their own doctors about the forum or telling NTMir or sharing it with other NTM support groups leaders.  Perhaps keep you and/or Nancy posted of gained interests.

Lottie

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#17 2016-09-10 14:37:18

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 156

Re: 2nd Saturday @ 2 SEPT 10 2016

Basic information is useful and I imagine it will continue to expand. They are trying to grow a community and if you feel comfortable it makes sense to check in from time to time. A new tool for us to keep informed!

In my opinion the blog portion of bronch360social.org is too cluttered for comfort.  Somewhat hard to follow the meat of the conversation for all the extras. Who cares about amassing points...why on earth should we be rating a post as worthy of our "care"?  My son says points etc are a mechanism site designers use to drive traffic to their site, but bronchiectasis patients are a captive audience.

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#18 2016-09-10 14:41:03

Lottie
Member
Registered: 2016-08-07
Posts: 15

Re: 2nd Saturday @ 2 SEPT 10 2016

Thank you, Kelly and Cynthia, for directions about what questions to ask your doctor!

Lottie

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#19 2016-09-10 14:43:07

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 156

Re: 2nd Saturday @ 2 SEPT 10 2016

re nebulizers:  yes, the standard is for docs to give you a scrip and then a home care products provider shows up with a big nebulizer that they rent to you. Quite expensive if your insurance does not cover.  My nebulizer cost less than $40.
Attachments are less than $5 which I plan to dispose of after another month or two and replace.  And yes the long skinny air tube never gets washed...I hang mine over a peg to let any moisture drip out.  Dr Horan was thrilled I could get myself set up so easily and cheaply thanks to Amazon. Much less hassle than insurance route often turns out to be.

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#20 2016-09-10 14:52:11

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 156

Re: 2nd Saturday @ 2 SEPT 10 2016

Kelly...hoping for some good definitive lab results this coming week. 2nd Sunday, October 9th, we hope to hear things are looking up and you are experiencing less pain.

I had an ah ha moment about ten days ago. I'd been nebulizing saline solution one or two times a week for most of the summer.  My chest had been really hurting lately...getting scary painful. After talking with Kelly about the tightness in my chest it triggered a memory about albuterol and saline.  It's often prescribed to nebulize before you nebulize the saline to pre-treat against tightness.  I had been given an albuterol inhaler when first diagnosed back in 2011 and experienced rapid heart and dizziness so I had been afraid to inhale it last winter when my doc in the desert prescribed nebulizing saline.  (first one to do so in 4 years of treatment)  Well it finally clicked.  As soon as I nebulized albuterol before my saline the soreness in my chest started to diminish. After discussing all this with Dr Horan she also said I should be nebulizing at least once daily as it works best that way.  Sometimes we really do need to let the doctor be the doctor!

Anyone have any other issues?

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#21 2016-09-10 14:55:47

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 156

Re: 2nd Saturday @ 2 SEPT 10 2016

One last thing...don't forget to sign up for the webinar with NTMir and ATS on Strategies for Reducing Infection.  If you are concerned about the tech aspects give me a call @ 360-220-1985

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#22 2016-09-10 15:06:42

kellyww
Member
Registered: 2016-07-06
Posts: 14

Re: 2nd Saturday @ 2 SEPT 10 2016

Oh good Cynthia - you know now that you just mentioned it...I always used albuterol first...to open the lungs before the saline/amak...yup, it was a process, so be it.  So glad that has helped, to much in my mind, sorry I didn't even remember that until now...hope the soreness is still easing and becoming more of a non issue for you.

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#23 2016-09-10 15:07:22

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 156

Re: 2nd Saturday @ 2 SEPT 10 2016

Anyone viewing this after the fact is welcome to post a comment or question.  Next group chat will be 2nd SUNDAY in October @ 2.  Thanks for joining us!

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#24 2019-08-11 14:47:44

etools
Guest

Re: 2nd Saturday @ 2 SEPT 10 2016

I use the saline solution.  I was told to do it 5 days a week by Dr. Daley at NJH, but I have slacked off mainly due to inconvenience of cleaning the devices.  I do think it helps produce sputum and I need to return to the regimen.  Not sure how long this is meant to continue.  The other part of my treatment is taking the antibiotics.

#25 2019-08-12 15:40:57

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 156

Re: 2nd Saturday @ 2 SEPT 10 2016

This is a private forum for members of our NTM support group.  If you wish to join, please call Cynthia at 360-220-1985.

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