1. < MAC & Bronchiectasis
Mentor

MAC: Just how well do nebs work, anyway?

Posted by Sue, Volunteer Mentor @sueinmn, Jul 8, 2021

Good afternoon,
Like many of you, as I sit with my "pipe" in my mouth for seemingly endless hours, I often wonder "Does all of this do any good? How deeply is this penetrating into my lungs since most of my bronchiectasis is in the lower lobes?"

Let me tell you a little story about my past few weeks...
On Fathers' Day, I started coughing like BT (before treatment), my lungs hurt, no energy, ... I looked at my trusty green machine and realized it was lonely - I hadn't used it for a few days. So back to faithful daily use, and it helped a little, but the darn cough was getting to be 24/7, so off I went to the doc. She changed my neb (temporarily) to DuoNeb to try to open my lungs better, stopped saline to calm the irritation and ordered a few days of steroid too. Boy, the junk really started to come out!

Then I restarted the saline, and just like I remembered from my early use, every cough was like licking the salt off my Margarita glass. But the cough is 90% gone, my O2 sats are almost (my) normal, and the fatigue is almost gone. This morning I realized that yesterday's saline vial wasn't used, oops, it had fallen on the floor. Then I ran off to do errands & chores.

GROSS ALERT!
When I started to cough, I was STILL bringing up a ton of mucus (after 48 hours) and it still tasted like salt.

Since 7% saline has been shown to inhibit or stop the growth of MAC bacteria, I find that VERY happy news - it means that salty fluid stays down there, bathing our lungs, even if we occasionally forget or get lazy (not that I'm recommending that...)

Perhaps that's why those of us routinely using hypertonic saline are having fewer exacerbations, and why I didn't end up as sick as I have in the past.

What has your experience been?
Sue

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

healthybon | @healthybon | Feb 4 9:35am
In reply to @maryjanechilds "Hi Healthybon, I know you are a patient of Dr. Swenson as I am. I think..." + (show)
@maryjanechilds

Hi Healthybon,
I know you are a patient of Dr. Swenson as I am. I think he is very good but you are also seeking help at National Jewish. Can you tell me why you think the extra care there is necessary?

Mary Jane Childs

Jump to this post

I send my sputum samples there occasionally just to double check results.....it'a probably not imperative!

REPLY
healthybon | @healthybon | Feb 4 9:39am
In reply to @lilianna "Vickie, call national jewish and when they call you back they ask what insurance you have...." + (show)
@lilianna

Vickie, call national jewish and when they call you back they ask what insurance you have. Unlike Mayo Clinic NJH accepts most of the insurance- all Medicare and most Medicare advantage. They will let you know. I also called my insurance( I have Aetna Medicare advantage ppo)and asked them if they have contract with NJH. Now after a 5 day visit I get bills but they are priced by Medicare. So do it and don’t be afraif

Jump to this post

I have aetna medicare advantage and they were out of network. i applied for financial aid ( you fill out a lot of paperwork), and I got a big reprieve. I don't have too much income..so I guess they accepted it ,,, took months and months before I got an answer.

REPLY
lweirdo1 | @lweirdo1 | Feb 4 12:48pm

The stuff in my lungs is like glue. If 7% helps break this up I’m all in!

REPLY
1 reply
camilleups | @camilleups | Feb 5 5:30am
In reply to @lweirdo1 "The stuff in my lungs is like glue. If 7% helps break this up I’m all..." + (show)
@lweirdo1

The stuff in my lungs is like glue. If 7% helps break this up I’m all in!

Jump to this post

I am in the middle of my testing at NJH as I speak.
I have NEVER been so impressed with a facility before.
They test for everything that could be related to my BE and MAC that I was diagnosed with in the past 6 months. I have gotten companionate care from each provider/ staff member that I have dealt with. The test result come in each day. A nurse, PA, or MD meets with you at the end of each day and reviews your results and discusses treatment plans, tests, options etc for your next visits or your future. I truly feel this is the best place anyone can go and feel I will have the best possible outcome with them. My BC/BS and Medicare so far state that I am covered. I urge anyone new on this journey as I am to try to get in with them. It will take a few months to get in but once there it is one stop shopping. It would have taken me several years to complete all of these tests and therapy appointments on my own as I live 6 months of the year in Down East Maine where there is very limited care for this type of condition. It doesn’t hurt to ask, so give them a call.

REPLY
1 reply
blm1007blm1007 | @blm1007blm1007 | Feb 5 5:02pm
In reply to @camilleups "I am in the middle of my testing at NJH as I speak. I have NEVER..." + (show)
@camilleups

I am in the middle of my testing at NJH as I speak.
I have NEVER been so impressed with a facility before.
They test for everything that could be related to my BE and MAC that I was diagnosed with in the past 6 months. I have gotten companionate care from each provider/ staff member that I have dealt with. The test result come in each day. A nurse, PA, or MD meets with you at the end of each day and reviews your results and discusses treatment plans, tests, options etc for your next visits or your future. I truly feel this is the best place anyone can go and feel I will have the best possible outcome with them. My BC/BS and Medicare so far state that I am covered. I urge anyone new on this journey as I am to try to get in with them. It will take a few months to get in but once there it is one stop shopping. It would have taken me several years to complete all of these tests and therapy appointments on my own as I live 6 months of the year in Down East Maine where there is very limited care for this type of condition. It doesn’t hurt to ask, so give them a call.

Jump to this post

I was there in October and yes it was good to have all the tests to know where one is with their health and in particular the BE and MAC. However, your visit appears to have been handled very differently than mine in terms of the statement of: "A nurse, PA, or MD meets with you at the end of each day and reviews your results and discusses treatment plans, tests, options etc. for your next visits or your future. " Could you explain your statement further.. Were the discussions because the tests showed problems or were they good results and they discussed the results to tell you all was good? My visit there went well just that this appears to be so different an experience than mine. I didn't get any results until my last appointment with the lead doctor who quickly went through the test results and it was overwhelming to have all discussed in that matter. Doing it at the end, the last visit, in that one session left me with many questions once I was home. Some tests came in after I was home and I had to interpret them myself and I'm not a medical professional. I called the lead doctor and did get a call back to help me in my questions but our time was limited due to the Dr. schedule. I am trying to get the second follow up call I was told we would have. I think getting the test results at the end of each day would be much more helpful and allow one to better understand and digest the information. Again, the visit overall was/is well worth it to gain greater insight into our health. Glad you posted this for all to know for possible future visit(s) etc. and for an understanding to help ourselves.

REPLY
1 reply
camilleups | @camilleups | Feb 6 8:32am
In reply to @blm1007blm1007 "I was there in October and yes it was good to have all the tests to..." + (show)
@blm1007blm1007

I was there in October and yes it was good to have all the tests to know where one is with their health and in particular the BE and MAC. However, your visit appears to have been handled very differently than mine in terms of the statement of: "A nurse, PA, or MD meets with you at the end of each day and reviews your results and discusses treatment plans, tests, options etc. for your next visits or your future. " Could you explain your statement further.. Were the discussions because the tests showed problems or were they good results and they discussed the results to tell you all was good? My visit there went well just that this appears to be so different an experience than mine. I didn't get any results until my last appointment with the lead doctor who quickly went through the test results and it was overwhelming to have all discussed in that matter. Doing it at the end, the last visit, in that one session left me with many questions once I was home. Some tests came in after I was home and I had to interpret them myself and I'm not a medical professional. I called the lead doctor and did get a call back to help me in my questions but our time was limited due to the Dr. schedule. I am trying to get the second follow up call I was told we would have. I think getting the test results at the end of each day would be much more helpful and allow one to better understand and digest the information. Again, the visit overall was/is well worth it to gain greater insight into our health. Glad you posted this for all to know for possible future visit(s) etc. and for an understanding to help ourselves.

Jump to this post

They might have changed their way of informing you of results. I can imagine it would be hard to digest all of this info after dozens of test. Yes they discuss every result from each day and the ones that had not retuned yet from a previous day. I have had 3 Drs and I think 2 NPs and at leasts 3 RNs that are assigned to you on different days. There is a FUP at the end of each day and that is the follow up appointment. I am also going to just a follow up appt on my last day. That is tomorrow. I was scheduled for 2 more days of just follow up appts with different Drs and asked to cancel them so I could fly out of here.
They all have been telling me the test results and advising me . I feel that it would be redundant and I have been testing 4 days with no time for lunch. Three days were 7 am to 5pm (including the FUP each day). Yesterday was 8 to 4 which was a nice break. Some of the tests had orders for no food or drink for 2 or 4 hours prior to the test. Luckily they have a small kitchen with sandwiches and drinks etc to grab on the go when you can finally catch up. They are more than kind and helpful. I made a friend with another BE and MAC patient on the first day. We had several tests scheduled at the same time the first day , then it all changed. We had very different tests after that as our cases were not the same. So they customize your stay to each individual. We are NOT treated like lab rats there.
I hope you find that they are more sympathetic to your needs when you return for your a future visit and you find them more understanding to you needs. You should let them know that the method they used with you was overwhelming.
They might have been told that it is too much at once and that might be why it is different now.
I do know some of my lab tests will come in well after I return home but I am pretty sure I have a handle on that already.
Hope you do well on this journey.

be

REPLY
1 reply
blm1007blm1007 | @blm1007blm1007 | Feb 6 12:40pm
In reply to @camilleups "They might have changed their way of informing you of results. I can imagine it would..." + (show)
@camilleups

They might have changed their way of informing you of results. I can imagine it would be hard to digest all of this info after dozens of test. Yes they discuss every result from each day and the ones that had not retuned yet from a previous day. I have had 3 Drs and I think 2 NPs and at leasts 3 RNs that are assigned to you on different days. There is a FUP at the end of each day and that is the follow up appointment. I am also going to just a follow up appt on my last day. That is tomorrow. I was scheduled for 2 more days of just follow up appts with different Drs and asked to cancel them so I could fly out of here.
They all have been telling me the test results and advising me . I feel that it would be redundant and I have been testing 4 days with no time for lunch. Three days were 7 am to 5pm (including the FUP each day). Yesterday was 8 to 4 which was a nice break. Some of the tests had orders for no food or drink for 2 or 4 hours prior to the test. Luckily they have a small kitchen with sandwiches and drinks etc to grab on the go when you can finally catch up. They are more than kind and helpful. I made a friend with another BE and MAC patient on the first day. We had several tests scheduled at the same time the first day , then it all changed. We had very different tests after that as our cases were not the same. So they customize your stay to each individual. We are NOT treated like lab rats there.
I hope you find that they are more sympathetic to your needs when you return for your a future visit and you find them more understanding to you needs. You should let them know that the method they used with you was overwhelming.
They might have been told that it is too much at once and that might be why it is different now.
I do know some of my lab tests will come in well after I return home but I am pretty sure I have a handle on that already.
Hope you do well on this journey.

be

Jump to this post

Thank you for your reply so quickly and during all you are doing/did at NJH.
It will be interesting to find out if they did change the procedure or if it depends upon the lead doctors preferred way of having all discussed, or the doctors philosophy. Who is your lead doctor, if you don't mind my asking? I met with my lead doctor for the 1st and last visit at NJH. It is a busy schedule. I did have a few lunch breaks and one lunch in the cafeteria. The food was good and they have/had a healthy selection or two.
True we are not, overall, treated like lab rats.
I drove from Oklahoma City to Denver and stayed the full time for all the tests. Actually my stay was all enjoyable with all the great things in the Cherry Creek Area where 'we' stayed. My terminoloy for my time in Denver and"NJH is 'a medical vacation.' 😊
How long before your final diagnosis, testing with C Scan, do you think you had symptoms of BE before they realized what it might be and ordered the test? As of now my one and only health problem is the BE and the constant need to clear my throat of sputum. I am fortunate in that sense, with just having the BE at this point in time....and may I say at 81 + 4 months. With all I have read, BE patients can live a full life with BE.....well I've already have done that. 🤗 With all my tests not showing any really concerning medical results, I apparently have a few more years at this thing called life and with THIS thing called BE 😁🙄😮
I will enjoy seeing your posts along the way on our journey with our BE diagnosis.
Thanks again for your reply. Barbra

REPLY
lorrainewenn | @lorrainewenn | Feb 7 5:44pm

I am waiting to schedule my appointment with NJH, looking forward to it!

REPLY
View MoreView Less
Please sign in or register to post a reply.