1. < MAC & Bronchiectasis

Jewish hospital appt

Posted by msk @msk, Dec 24, 2022

Hi yesterday i got my call from denver to schedule my appointment for a second opinion. It will happen in march. Its a two week schedule, they say i will have lots if test
I know some of you have been there could you share your experience and did you get answers. I have been on 3 meds for almost a year and started arikacy 1 mo ago. I was diagnosed as mild to moderate but still positive. Its crazy.
Per my infectious diseases due to bronchiectasis the probability of mac returning is pretty high.
Thanks miriam

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irenea8 | @irenea8 | Jan 2, 2023
In reply to @sueinmn "That is quite a regimen! How does the Netipot helps if the mucus is in your..." + (show)
@sueinmn

That is quite a regimen! How does the Netipot helps if the mucus is in your lungs?

I too have arthritis - pretty much everywhere - and find chair yoga with many bending poses as well the the good old "downward dog" to help move the mucus when walking hurts too much.
Have you been tested for CF genes, since even using so much saline the mucus remains thick?
Sue

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I also thought you might get tested for CF. The test is expensive and might not be covered but sounds like you should consider it. I had the test and mine came out negative. Has your pulmonologist considered putting you on Pulmozyme? It is helpful for those with CF that have very thick and difficult mucus. Some say it is not recommended for Non CF Bronchiectasis however. I asked my Pulmo about that and he said it was based on only one study and that they have found it helps some people with Non CF Bronchiectasis. It is very expensive and also may not get covered. I spend about one and a half hours on airway clearance a day and i think that is more than average. So 4 to 5 is a lot.

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1 reply
pop55 | @pop55 | Jan 3, 2023
In reply to @raney "I am seeing another Dr at UNC-CH but i noticed with my very 1st appointment over..." + (show)
@raney

I am seeing another Dr at UNC-CH but i noticed with my very 1st appointment over a year ago , that Dr. Daniels name was on all the orders for tests and studies during that initial visit.
I am concerned mostly because the doctor I see has to spend so much of her time in the pediatric clinic. She is not full time in the adult pulmo clinic.

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I would try to get an appointment with Dr Daniels if you can as she has a lot of experience with Bronchiectasis and Mac. Where in NC do you live? I am in Wake Forest/North Raleigh area.

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1 reply
pop55 | @pop55 | Jan 3, 2023
In reply to @nana43 "Hello Pop55! I go to UNC as well. My local pulmonologist had first referred me to..." + (show)
@nana43

Hello Pop55!
I go to UNC as well. My local pulmonologist had first referred me to Dr. Daniels but I couldn’t get an appointment with her for six months or more when initially diagnosed. I am now seeing one of the colleagues at the same location, Dr. Patel. However, I think his expertise is Bronchiectasis.
I have an appointment in February to see if I have obtained clearance after six months of meds. I’m going to wait till after that appointment to make a decision about a doctor change, I guess. If I’ve made clearance and I just continue on the medication and it worked, then it won’t matter. However, if I don’t clear it, then I would like someone that is more specialized in the field of MAC lung disease.
Thank you so much for replying to my post and the advice!
Happy New Year! Dee

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I am trying to see if I can clear MAC by doing Airway Clearance and Dr Daniels is in agreement. I don't have any symptoms of MAC but I do have high colony counts and sometimes I am Smear positive. Do you have any side effects from taking the drugs? I am praying for you that you can remain clear and just be done in 6 months. Do you live in NC? Happy New Year!

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1 reply
raney | @raney | Jan 3, 2023
In reply to @sueinmn "That is quite a regimen! How does the Netipot helps if the mucus is in your..." + (show)
@sueinmn

That is quite a regimen! How does the Netipot helps if the mucus is in your lungs?

I too have arthritis - pretty much everywhere - and find chair yoga with many bending poses as well the the good old "downward dog" to help move the mucus when walking hurts too much.
Have you been tested for CF genes, since even using so much saline the mucus remains thick?
Sue

Jump to this post

Sue, I also have chronic post nasal drip. ENT and the Allergist have Rx. 3different nasal sprays. Each helped with the sinus drainage but all cause chest tightness and difficult breathing Azelastine HCl; Mometasone Furate;
Irpatroplum Bromide; and I have tried over the counter nasal sprays (Fluticasone Propionate). I have also tried
Xlear Nasal spray but that makes my nose bleed after about 3 days.
Nettie pot using filtered and boiled water and saline packets 2 or 3 times a day helps wash out the mucus from my sinus. It is sometime depressing because no matter how much time I spend cleaning the head and he lungs, the amount of mucus does not diminish,

I also have hiatal hernia with GERD
Head of Bed on blocks about 6" and no food or beverage for 3 hours before going to bed and avoid acid foods and beverages.

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raney | @raney | Jan 3, 2023
In reply to @pop55 "I would try to get an appointment with Dr Daniels if you can as she has..." + (show)
@pop55

I would try to get an appointment with Dr Daniels if you can as she has a lot of experience with Bronchiectasis and Mac. Where in NC do you live? I am in Wake Forest/North Raleigh area.

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I live in Wilmington now, but lived and worked in Raleigh for MANY years, I will see if I can get an appointment with her without hurting my Docs. feelings
I also searched after someone mentioned Dr. Kenneth Olivier. He has impressive experience and he is at UNC-CH Pulmo Clinic. now.

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raney | @raney | Jan 3, 2023
In reply to @nana43 "Hey Raney I go to UNC as well, and you are probably seeing a”fellow”. This is..." + (show)
@nana43

Hey Raney
I go to UNC as well, and you are probably seeing a”fellow”. This is a teaching hospital and a fellow is like an intern of sorts. They have to work under a specialty doctor for 2 years I think. I started out with one as well and then switched because of complexities of MAC and definitely wanted someone with knowledge and experience. However, with that being said- Mary Daniels IS one of the best in the field. I couldn’t get an appt with her so referred to a colleague. So if she is following your fellow you are in good hands!
Blessings,
Dee

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Thank you. That is encouraging.
Yes, I did a little searching on line this week and she is a "fellow." I have been going for a little over a year. I will find out if Dr. Daniels is still working with her.

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raney | @raney | Jan 3, 2023
In reply to @irenea8 "I also thought you might get tested for CF. The test is expensive and might not..." + (show)
@irenea8

I also thought you might get tested for CF. The test is expensive and might not be covered but sounds like you should consider it. I had the test and mine came out negative. Has your pulmonologist considered putting you on Pulmozyme? It is helpful for those with CF that have very thick and difficult mucus. Some say it is not recommended for Non CF Bronchiectasis however. I asked my Pulmo about that and he said it was based on only one study and that they have found it helps some people with Non CF Bronchiectasis. It is very expensive and also may not get covered. I spend about one and a half hours on airway clearance a day and i think that is more than average. So 4 to 5 is a lot.

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Someone wrote a few months ago about wanting to cry each time they start the daily airway clearance. I can relate to that. This group has made me realize that the amount of time I am spending is excessive. The Respiratory Therapist told me to use nebulizer for 10 minutes and STOP!! I would have died from not being able to breath months ago, if i had followed her instructions! She also works in the Peds. clinic part of the time.
No! I have not been tested for CF gene, but I will contact the pulmo in UNC_CH and ask about that since she sees children with CF in the Peds. clinic.

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extracare808 | @extracare808 | Mar 4, 2023
In reply to @tconz "Did you start taking the Big 3 before you went to NJH or waited until you..." + (show)
@tconz

Did you start taking the Big 3 before you went to NJH or waited until you saw them to find out their treatment plan? I really appreciate your experience.

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I had been advised to do 'watchful waiting' by 3 different community doctors, including 2 at Mayo. Their rationale was that 'the treatment was worst than the disease'. Therefore, I had not taken any meds prior to my NJH visit. During my 2nd meeting with my NJH doctor, I was told that I should start meds ASAP, even though I was still asymptomatic.

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1 reply
extracare808 | @extracare808 | Mar 4, 2023
In reply to @pop55 "I am trying to see if I can clear MAC by doing Airway Clearance and Dr..." + (show)
@pop55

I am trying to see if I can clear MAC by doing Airway Clearance and Dr Daniels is in agreement. I don't have any symptoms of MAC but I do have high colony counts and sometimes I am Smear positive. Do you have any side effects from taking the drugs? I am praying for you that you can remain clear and just be done in 6 months. Do you live in NC? Happy New Year!

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I believe about 17% can clear MAC via airway clearance. I was not able to clear my MAC, but I was able to dramatically decrease my colony count from over 200 to below 20, so it can still make a dramatic difference.

REPLY
tconz | @tconz | Mar 4, 2023
In reply to @extracare808 "I had been advised to do 'watchful waiting' by 3 different community doctors, including 2 at..." + (show)
@extracare808

I had been advised to do 'watchful waiting' by 3 different community doctors, including 2 at Mayo. Their rationale was that 'the treatment was worst than the disease'. Therefore, I had not taken any meds prior to my NJH visit. During my 2nd meeting with my NJH doctor, I was told that I should start meds ASAP, even though I was still asymptomatic.

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I am now 2 1/2 months into the Big 3 and have been doing well on them. I go to NJH May 2nd and am anxiously awaiting my visit.

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