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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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Sorry, my comment above, from Mokie, was for Sunni. It begins "See someone else." I did not intend my comment to be out of order. Apologies!
@mokie I’m so thankful for your response. I didn’t want to “over react “. Thanks to a comment above, I’m going to contact the chapel hill clinic. They allow you to refer yourself. Hopefully I can get in sooner than later. All of your comments, and the other boards I’ve read have been so helpful and I am just so thankful.
Have the greatest day
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2 Reactions@snoei thank you! I just looked up and they have several devices. Which one do you recommend? I’m so new to this, I am clueless and feel like I’m breathing through a straw 🤦♀️
@sueinmn
Not to split hairs or raise a red flag but Bronchiectasis is no longer considered a rare disease.
"Previously classified as a rare or orphan disease, bronchiectasis has now been reported at rates up to 566 per 100,000 population with a prevalence that has increased 40% in the past 10 years." [2018]
https://pmc.ncbi.nlm.nih.gov/articles/PMC6173801/
This is good news for all of us. As BE becomes more common and more widely recognized, theoretically more pulmonologists will become familiar with the disease and include it in their differential diagnosis.
@scoop It might not be "rare" in prevalence, but treatment knowledge and experience does not seem to be increasing as fast as one would hope.
Like you, I hope that "..."theoretically more pulmonologists will become familiar with the disease and include it in their differential diagnosis...'' I plan to talk to my pulmonologist about how she/we can help advance knowledge and recognition. With the use of diagnostic tools, there should be a way to get there.
But once recognized, the key is to be current with best practices & treatment protocols. My Fear is the recognition may be there, but the people with up-to-date skills will not.
Just to get a picture of totals, based on numbers from the Lung Association, the Asthma and Allergy Foundation, and bronchiectasisinfo.org:
Bronchiectasis 600,000 people (based on increasing awareness/diagnosis) or .18% of people,
COPD 11,100,000 or 3.3% of people, and Asthma 28,200,000 or 8% of people
That means the pulmonologist is 18 times more likely to see people with COPD and 450+ times more likely to see people with Asthma than people with Bronchiectasis.
Where will their treatment knowledge and expertise be the greatest?
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2 Reactions@sunnirivers ,
Finding the right pulmonologist we trust and comfortable with is very, very crucial for us on this journey. I had seen a different pulmonologist on the same team just to get a second opinion. My pulmonologist is very open minded, he referred me to his colleague because this colleague's specialty is BE. I saw this colleague twice and then I decided to stay with my pulmonologist. If I were you, I would ask my pulmonologist for a referral, if he has problems with that, then you know he might not be open minded, to me, not open minded, not good. It seems your pulmonologist gave you some clear answers, it seems he knows what he is doing, I like doctors who give clear answers even though we don't like it . In any case, a second opinion is always a good approach.
Good luck!
Ling
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2 Reactions@wangling
Thank you so much! I think he is “aware” though I am not comfortable with his actual experience.He simply told me to take a bunch of medication (not what they were for or why) and no he wouldn’t do a wash and he doesn’t think my cancer has re occurred in my lungs. Honestly, I think he would have known better what to do if it was cancer.
I appreciate your feedback so much because maybe once I meet his nurse practitioner that will make all the difference!
@sueinmn
Holy cow. Yeah. I couldn’t agree more. When this all started in me over 25 years ago, NJH in Colorado was our only hope and even they were in a discovering phase.
And so much has changed since then. An experienced Dr is so important. Like when battling cancer, I wanted someone with experience because protocols, medication, our responses are all so different. I’m taking all of your advice and going to find the best fit for my situation. Hell, it could be cancer. He’s not even doing another cat scan until July. But I genuinely don’t think it is or I would be on the phone with my oncologist, lol.
Thanks again. All of your voices, advice and experience matters. I’m, again, just so thankful for this group
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2 ReactionsI use their "oscillating positive expretory pressure device", the
instruction booklet calls it. Like a flutter valve, Monaghan says to
replace it annually. They couldn't give me a good reason. I hate tossing
anything in the landfill that still works well, so Iam using mine for18
months. I have a new one and will toss the old one July 1st. I'm not
recommending you do the same, just sharing what I'm doing.
Wishing you the best!
Eileen S
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2 Reactions@snoei I was not too diligent about replacing mine either, until about a year ago - I misplaced the old one, broke out the new one and the treatment felt "different." When the old one resurfaced a few days later as I unpacked, I tried them side-by-side, on the same setting. The new one required less effort to get the same vibration in my chest. So, now I am convinced that they are on to something. I don't know whether it is extended use or repeated sterilizing (I only do it once a week), but something changes the way the device works over time.
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