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What to do when pulmonologist is passive?

Posted by sunnirivers @sunnirivers, May 5 4:11pm

Thank you for this group. Recently diagnosed, again, I'll explain.
I am a 59 yo female, diagnosed with aspergillus (with removal) at 33. Wound up a NJH after repeated pneumonias. Sputum culture came back negative. Went on with my life.
40's was inflammation of joints, lots of them.
Early 50's breast cancer.
Past 7 months, lung infection after lung infection. Insisted on cat scan. Came back tree-in bud, both lower lobes, and ill defined solid clustering of nodules within left lower lobe, largest 7mm.
Saw local pulmonologist. I was a new patient. Walked in. Said I have bronchiectasis and suspects NTM. Said he wouldn't be able to get a clear diagnosis because 2 cultures have to come back positive and I have been on multiple antibiotics. My spirometry came back low but I don't even know what that means. He brushed it off. I asked him to please do a lung wash because 20yrs ago that made me feel better. He said it wasn't necessary. He prescribed alot of things. Something to go in nebulizer, (my pharmacy doesn't fill it), a flutter valve, (can only find on amazon), zurtek, advair, albuterol, and flonase. Said I would have a follow up cat scan in July. I see his nurse practitioner next week, thank goodness. I still can't breathe well. My chest feels tight, and restricted. Should I see another Dr? I am not a wealthy person and trying to find a specialist, in this field, in the South, will not be easy and most likely very costly. Any advise would be great. He also said he doesn't think its cancer again? He said thats the least likely.
I can't thank you enough for any words of wisdom you can share. I have been scrolling through all your boards and found out that I should buy my 7% from Amazon and not pharmacy. I would have never known that if it was not for all of you. So, again, my sincere gratitude from a new comer who know very little. I did watch the 40 minute video that Sue recommended from NJH.
Have the greatest day

Sunni

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bayarea58 | @bayarea58 | 5 days ago
In reply to @sherrig "@sunnirivers Dr Colin Swenson co-hosts (Wendy Drummond is the other host) a podcast called NTM Talk...." + (show)
Profile picture for sherrig @sherrig

@sunnirivers Dr Colin Swenson co-hosts (Wendy Drummond is the other host) a podcast called NTM Talk. You should take a listen-to all seasons. They just released a new season after a few years break. He is very well respected and seems to be very up to date and compassionate. I live to far away but would jump at a chance to have him as my treating doctor.

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@sherrig yes, shout out to Wendy Drummond as well! They are both excellent, can’t say enough good things about their NTMTalk podcast.

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sunnirivers | @sunnirivers | 5 days ago

Then I am absolutely so fortunate to only live 3 hours and wait 6 months for him! I will listen!

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jbix | @jbix | 4 days ago
In reply to @bayarea58 "@sueinmn absolutely. It is incredible how few pulmonologists have the treatment knowledge and experience to treat..." + (show)
Profile picture for bayarea58 @bayarea58

@sueinmn absolutely. It is incredible how few pulmonologists have the treatment knowledge and experience to treat BE well, even where they had the wherewithal to include in differential. The treating WELL part is really lagging. As someone who is part of a very large HMO, I had to go elsewhere for that expertise (and pay out of pocket) and I can tell you that the difference in expertise between my very large HMO and the designated care centers for BE/NTM (I have been to two) is significant! My experience has made me a huge advocate for the designated care centers.

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@bayarea58

I’m also in the Bay Area of San Francisco and am being treated at a large HMO that starts with a K. Could I be in touch with you confidentially about your experience?

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rosem26957 | @rosem26957 | 4 days ago
In reply to @sunnirivers "@bronchiectasaurus I can't thank you enough for your encouragement and kind words. I called the closest..." + (show)
Profile picture for sunnirivers @sunnirivers

@bronchiectasaurus I can't thank you enough for your encouragement and kind words. I called the closest clinic, which is about 3 hours east of me in Charleston, SC. They said my pulmonologist had to refer me. I think I will see if the PA will do that for me. I have literally seen the pulmonologist once, for about 20 minutes.
Have the best evening. And again, thank you for your kindness. It genuinely matters.

Sunni

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@sunnirivers I live SC and go to UNC at Chapel Hill, over a 3 hour drive to see a bronchiectasis specialist. When I called for initial appointment, I did need a referral from my previous pulmonologist, along with medical records and scans. The care is comprehensive and the response time is fast. The doctors as well as the whole team really know you, know your case and care about outcomes. Highly recommend.

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bayarea58 | @bayarea58 | 4 days ago
In reply to @jbix "@bayarea58 I’m also in the Bay Area of San Francisco and am being treated at a..." + (show)
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@bayarea58

I’m also in the Bay Area of San Francisco and am being treated at a large HMO that starts with a K. Could I be in touch with you confidentially about your experience?

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@jbix Yes.

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mjf33709 | @mjf33709 | 4 days ago

I would ask for pulmonary function tests. They would determine if you actually respond to a particular drug like albuterol.
My husband was prescribed this 5 years ago ( he has Mac and bronchiectasis.) After all this time, pulmonary function tests showed albuterol didn't help. Five years of nebulizing albuerol twice a day!
It would seem these tests should be done instead of just shooting in the dark!

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sunnirivers | @sunnirivers | 4 days ago
In reply to @rosem26957 "@sunnirivers I live SC and go to UNC at Chapel Hill, over a 3 hour drive..." + (show)
Profile picture for rosem26957 @rosem26957

@sunnirivers I live SC and go to UNC at Chapel Hill, over a 3 hour drive to see a bronchiectasis specialist. When I called for initial appointment, I did need a referral from my previous pulmonologist, along with medical records and scans. The care is comprehensive and the response time is fast. The doctors as well as the whole team really know you, know your case and care about outcomes. Highly recommend.

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@rosem26957 Thank you so much. I am going to ask the Nurse practioner on Tuesday to send a referral to them. That way I will be on two list of specialist, one in Atlanta, and one in NC.
I can't thank you enough for this helpful information.
Have a wonderful weekend

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sunnirivers | @sunnirivers | 4 days ago
In reply to @mjf33709 "I would ask for pulmonary function tests. They would determine if you actually respond to a..." + (show)
Profile picture for mjf33709 @mjf33709

I would ask for pulmonary function tests. They would determine if you actually respond to a particular drug like albuterol.
My husband was prescribed this 5 years ago ( he has Mac and bronchiectasis.) After all this time, pulmonary function tests showed albuterol didn't help. Five years of nebulizing albuerol twice a day!
It would seem these tests should be done instead of just shooting in the dark!

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@mjf33709 They did one when I was there a few weeks ago. I have been on albuterol and nebulizer treatments for about 7 months because I have been fighting multiple infections, or so I thought? My results have L all over them. I guess that means low? The Dr said, "oh they are not bad". I, obviously, have no idea what that means. So I hope to get more details when I see nurse practitioner next week.
My "wet" cough is actually better. Even my "dry" cough. But I still feel like there is a vice grip on my lungs daily.
I can't thank you enough for responding.
Have a wonderful day

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melinda561 | @melinda561 | 3 days ago
In reply to @mjf33709 "I would ask for pulmonary function tests. They would determine if you actually respond to a..." + (show)
Profile picture for mjf33709 @mjf33709

I would ask for pulmonary function tests. They would determine if you actually respond to a particular drug like albuterol.
My husband was prescribed this 5 years ago ( he has Mac and bronchiectasis.) After all this time, pulmonary function tests showed albuterol didn't help. Five years of nebulizing albuerol twice a day!
It would seem these tests should be done instead of just shooting in the dark!

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@mjf33709 The albuterol is to relax the airways so that the hypertonic saline can do its job of helping to expel the mucous during airway clearance. This is how it was initially explained to me. My pulmonary function tests results have declined but showed slight improvement recently after starting Brinsupri. I do have extensive BC.

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1 reply
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mjf33709 | @mjf33709 | 3 days ago
In reply to @melinda561 "@mjf33709 The albuterol is to relax the airways so that the hypertonic saline can do its..." + (show)
Profile picture for melinda561 @melinda561

@mjf33709 The albuterol is to relax the airways so that the hypertonic saline can do its job of helping to expel the mucous during airway clearance. This is how it was initially explained to me. My pulmonary function tests results have declined but showed slight improvement recently after starting Brinsupri. I do have extensive BC.

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@melinda561

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