Lower Lobes

[Ratatosk]

Last week DS had a lung scan. We've never gotten a clear picture with xrays, so every couple of years he gets a lung scan to get a better view of his small airways. Last week his doctor was confused as it showed issues with the larger airways, mainly the right lower lobe. Yet, lungs sounded clear, no cough... Not sure if it was just a bad picture... He's healthy.... We wondered if there was something more we should be doing...
DS never seems to have a cough -- productive or otherwise unless he's been sick with bronchitis. Last time was several years ago. We do 3, 30 minute vest treatments a day, varying the speeds, stop for huff coughing. He gets plenty of exercise -- goes for numerous walks and is activities at his summer daycare program. An hour of gymnastics twice a week, swimming lessons...
Just wondering what else we should be doing. I'd asked about focusing CPT on certain areas. The whole issue is confusing -- weird, frustrating..... Doctor didn't tell us to change what we were doing, nor could he really offer any suggestions. Basically told us to keep doing what we're doing. He was going to take the films and visit with one of the radiologist, compare them to the ones taken last time...

 

[Havoc]

I had a similar experience, although I was experiencing wheezing. Wheezing is absolutely abnormal for me. I have only wheezed when I had ABPA. I had my IgE checked and it was only 147, I think. Way below a threshold for ABPA. Throat swab was negative for anything other than normal oral flora. We tried adding xoliar and naproxen for inflammation but the wheezing continued. I ended up having myself admitted and we did almost 2 weeks of IV antibiotics. During the admission I had a CT and CXR, both of which looked pretty unremarkable. Still, the wheezing continued. I had to really push for a bronchoscopy, and they finally agreed. I was told that they would not find anything as my lungs sounded "absolutely clear." I woke up in recovery to a nurse telling me how shocked everyone was to find 2 distal mucus plugs, one of which took 20 minutes to remove. The moral of the story is that you need to push for aggressive care. I knew something was wrong, but clinically there wasn't much evidence for it. The culture of the BAL fluid revealed aspergillus and parainfluenza virus. I have since gone on itraconazole to treat the aspergillus. The unfortunate thing is I was treated with antibiotics which were completely unnecessary. Good luck. Jonathan

 

[Rebjane]

My daughter has not yet had a lung scan. She does get CXR every year. She had some changes on her CXR this past year, though she was symptomatic prior to the xray. She had been coughing and had the flu 2 years ago; which I think caused the damage. Since that time it seems she has more issues when she gets cold, etc needing prednisone and anti's more often. We do her Pulmozyme at nite after her VEST last treatment. That was the suggestion of our CF doc.

WE are very compliant with her treatments; as I am sure you are as well. I do manual chest PT when she gets sick in addition to her VEST. I have cut done on sugar in her diet alot.

Her health is on the upswing for now. Next clinic visit we are going to try to screen for NTM, I guess it is an expectorated sputum sample so it may or may not work as she hates to cough stuff up and sometimes there is nothing there.

I tend to worry alot. At one point the CF doc had to say to me; even if you do everything CF is progressive and even without symptoms there can be changes in the lung.

Did the CF doctor seem concerned?

 

[Ratatosk]

Doctor didn't seem concerned. More confused at what he was seeing on the films.

 

[JENNYC]

Abby has a bad upper right lobe as well with no symptoms. She has a lymph node that is blocking that lobe off. They are hoping that she outgrows the lymph node. Sometimes they here it crackling and other times not.