Connect
Radiology versus Clinical
Hi all - In May, I had a heart calcium score CT scan done. The radiologist noted mild traction bronchietasis. No additional detail was provided so I got a second read of the scan. The second radiologist (board certified in cardiac thoracic radiology) interpreted the scan as showing “moderate cylindrical bronchietasis noted diffusely more prominently involving the segmental to proximal subsegmental bronchi.
I found a doctor in my local city magazine’s Top Doctors issue under pulmonology who listed bronchietasis as one of his top interests. He has a good academic background and is rated very highly by patients on several review sites. He seemed very friendly and knowledgeable. He went through my clinical history. He also went over the CT scan and a prior one done in 2016. He pointed to things he thought the radiologists might have been looking at but his final conclusion was he did not see anything that he considered concerning. So given the fact that I have no symptoms and my spirometry tests were normal he said he didn’t need to see me again and the only recommendation he gave was to get antibiotics if I get bronchitis. He did say I could come back I five years “if I felt like it” - which was a little off putting. Of course I was relieved but also started to feel confused so I asked him as he was leaving the room whether the radiologists got it wrong. He said no but offered no additional reasoning. He had only quickly glanced at the radiologists’ reports and gave them back to me without copying them into the chart.
Sorry for the long winded way of asking if anyone else who is asymptomatic had a doctor dismiss a radiology report of bronchietasis and suggest no further follow up? If so - did you seek a second opinion. Also for anyone else who did not follow up and did not have any breathing therapy suggested did your bronchietasis progress? I am confused about whether to get a second opinion or not given this doctor’s supposed knowledge on the subject. Any input would be appreciated.
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
Thank all of you for the most informative discussion here.
I am currently seeing a pulmonologist at Mayo Clinic, Rochester, MN
who finally gave me very specific details on Airway clearance with nebulizing 7% saline while using a an Aerobika device. I also begin the nebulizing with Albuterolto open the bronchial tubes.
I was diagnosed over a year ago with BE and MAC from docs in Duluth , MN, Essential Health and after coughing up some blood a couple of times started the Big 3 antibiotics 6 months ago which I would like to get off of now that my sputum is showing negative for MAC.
Has anyone been able to get off of the antibiotics if you are doing saline airway clearance regularly or do I strictly have to take them for a year after a negative result?
Thank you all for your very helpful experiences!
Has anyone stopped
As Linda Esposito posted in March, the Bronchiectasis and NTM Care Center Network now has multiple sites up and running. You can find the nearest site to you here: https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/Find-a-Center
Expert care makes all the difference in the treatment of bronchiectasis and NTM, and finding a doctor/clinic whom you trust saves a bucket of angst. Good luck!
-
Like -
Helpful -
Hug
2 Reactions@annalaine interesting re study of BE patients heterozygous for PCD. Can you provide a link or citation for that study? I also had a couple single gene hits for PCD, but like you was told there needed to two copies to be diagnostic. I also have no history of lung infections. None of my doctors have shown any interest in looking further at PCD.
I may have saved it and will look through my bookmarks. I think they are finding more instances of autosomal recessive diseases where there can be some limited effects. I have hereditary hemochromatosis and both my parents are carriers and they do store a little more iron than the average person. As I mentioned - I do have some associated conditions with PCD such as the inherited malrotation which is relatively rare. Even though the pulmonologist I saw was dismissive of the BE he was somewhat interested in the PCD and the possibility my cilia being mildly affected. I’ll see if I can find the study.
Still looking. I found a reference to the info regarding heterozygous AAT carriers in an NJH cohort on another website and thought I had found the table showing the AAT patients along with other bronchiectasis associated conditions. Hopefully not a false memory. I’ll keep looking.
Unfortunately I think without having a double mutation or a compound set of mutations on the same gene, it is very hard to get a diagnosis. Technically with the chronic congestion and malrotation I have 2 out of 4 criteria which qualifies me for further testing. Given my genetic status and lack of infection history I doubt further testing would be recommended. Genetics is so complex but diagnostic guidelines are often very rigid. I think there is a lot of grey area.
Could anyone share what type of experience they had if they visited the KU bronchiectasis center in Kansas City?