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What to do when pulmonologist is passive?
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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I relate to not having a competent pulmonologist who understands bronchiectasis. I also can’t afford to go outside my health system.
Fortunately my bronchiectasis is “mild” and nebbing saline works for me. I am very sorry you have to deal with more advanced disease. I hope you can find a way to get to a “center of excellence” like NJH. If my symptoms were worse I would definitely do that. Best wishes to you!
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1 Reaction@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
@bronchiectasaurus also, what % of saline do you use and where do you purchase it from? Thanks so much.
I use Resp-Ease 7% saline purchased from Amazon.
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1 ReactionThis is my first post but I may be able to help. I receive excellent care at the Bronchiectasis Care Center at UNC in Chapel Hill. We travel from Virginia, about 200 miles each way, a couple of times a year. The team is outstanding. Good Luck
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1 Reaction@sunnirivers I am glad you are finding our group and the information here helpful. In our health journeys, I think we have all encountered less-than-helpful practitioners, and switching often takes a lot of time, energy and even money.
However, bronchiectasis and NTM are rare conditions, seldom encountered by many general-practice pulmonologists so we are left to search. It took me almost 4 years find my current awesome team and get an appointment - even though they were part of my same clinical system! If I were you, I would try to get a referral to the clinic in Charleston - it the PA goes to bat for you, most likely the pulmonologist will make the referral. If not, ask your primary provider to do it (this shouldn't require a visit - just a phone call.)
Good luck, and please return to us with many questions you may have.