Please tell me about chest X-rays.....

[Gammaw]

Every year our CF Clinic does chest x rays. That certainly seems prudent and necessary given the obvious nature of CF as predominantly a lung disease. But. I never hear the results or see them. Except when I ask I'm told "no change." Now I assume that's the goal, rather than seeing changes that likely signify deterioration. But I'm thinking I should have a copy of the report ... except I don't even know what I'd be looking for if I had them. So, in my efforts to expand my knowledge base and vigilance, can you all share your insight regarding lung X-rays and scans? How often do you have them done? Do you see a copy of the reports? What are you looking for? I really appreciate any effort to increase my knowledge base! Such neglect on my part.....
Blessings

 

[Aboveallislove]

Great question! DS has one annual one. We do a couple weeks before his annual check up and I always call and have them fax report so I can ask any questions at annual. Do same for blood draw although do that locally and X-ray at cf center radiology. They will give specifics in the report and also compare. This year it said something was better than last year but last years report didn't even mention the issue. I asked cf doctor and she said diff dr note things differently but no issue. I can ask to see and dr can pull image in cf clinic room and explain. Also the report will classify such as mild inflammation or other specifics on how much. Let me know if you want me to email you a couple reports.

 

[kenna2]

I can think of only a handful of times I've ever seen my x-rays. What I know they look for is damage, possible pneumonia, bronchitis, other infections, and other things that I can't remember right now. I know from looking at them where my bones are, the white spots/areas within the lung is the mucus and blockage. The black that you see throughout is the air. I know one of my lungs appears a lot whiter than the other due to the damage. However, I'm happy to report that Orkambi has improved them and I see more black now. My CF clinic in Cleveland is part of a site called MyChart that is linked to your doctors so you can see all your lab reports, PFTs, meds, and other reports on there (no pictures). It's made things a lot easier to see where I'm at. That is about the extent of my knowledge.

 

[Ratatosk]

I always request paper copies of labs, clinic notes, etc. DS used to have chest xrays at the local CF clinic every year the reports which always showed "airtrapping, thickening and infiltration". DS had no symptoms, nor was the local cf team ever concerned with the reports, was never mentioned. Then I received a call when DS was 5 from CF nurse in the City asking how DS was with his pneumonia. You know, because of the extensive infiltration. So we drove down to the City for xrays and a CT scan which showed ds was fine. After that we decided since ds had never ever shown a normal chest xray at the local hospital/clinic that we wouldn't have them done there any more, instead would have them done at the Children's Hospital in the City where there was a much larger staff of radiologists who were more knowledgeable about CF.

DS now has annual lung scans in which he inhales a radioactive isotope via a nebulizer which gives a much clearer picture of the small airways. A couple years ago there were some issues with his larger airways and air trapping, so we increased his vest treatments and did some targeted cpt -- focused on the problem area.

 

[Gammaw]

So Ratatosk, are you saying that the x-rays were read incorrectly by your local docs? And in fact there was no air trapping, etc.? Or are we just saying that what they saw was normal for a CFer? Should CF lungs normally look different than average?

 

[Ratatosk]

There was air trapping early on when he was recovering from an exacerbation, but the infiltration was most likely the inability of getting a clear x-ray and probably read incorrectly. Rechecked past reports and it showed up as RMS or right middle lobe syndrome -- possible lung collapse when he was 5 --- No wonder the doctor in the city was concerned, but there were no symptoms whatsoever and xrays and ct scans conducted at the children's hospital showed it wasn't the case. Otherwise just general notes during clinic visit refer to clear lung scans. I know I've gotten more detailed reports in the past that do talk about some progression -- but nothing of note. The reports I receive now from Children's Hospital tend to indicate some progression of the disease --but generally clear scans, and exams and pfts are good.

I still contend it's because locally the radiologists aren't specialized and it's a smaller regional hospital, less staff. Heck, I was once sent home from the clinic by a doctor who looked at my xrays and sent me home with pharyngitis and a virus, only to receive a call two weeks later that a radiologist had looked at the xrays and determined I had pneumonia.

 

[Gammaw]

I see. It does seem that poorly taken films is a common problem and are often compounded by less than accurate readings by radiology. That does make it difficult! Thanks for the clarification. We do always have films taken at the children's hospital where the CF Center resides. So hopefully that hedges against poor films and poor readings.
Now I suppose one of the questions is what correlates to disease progression? I see kenna looking for damage and infections, and I wonder what a report says when it is referring to damaged areas. I think it's phenomenal that Jenna can see a difference in her lungs on the X-ray thanks or Orkambi!

 

[Aboveallislove]

So Ratatosk, are you saying that the x-rays were read incorrectly by your local docs? And in fact there was no air trapping, etc.? Or are we just saying that what they saw was normal for a CFer? Should CF lungs normally look different than average?

My understanding is that CF lungs look different than "normal" lungs even early. I asked I think at 1 year if they looked different and think they said yes, but still no issues but what is noted says "consistent with CF."

 

[Gammaw]

Aha. I suspected as much. But don't ya just wonder what that difference actually is!

 

[printer]

My CF Doctor told me "a CF lung is a mind field for a Radiologist that has not been trained in CF".

 

[printer]

I'm a JUNIOR MEMBER and I joined in NOVEMBER 2016. Nice to be here.

 

[Imogene]

Printer: May you be the FIRST to know on this BOARD that a very generous member has fixed our database...you, indeed have well over 2000 posts...I will figure out how to restore your info! Welcome HOME~!!

 

[printer]

just checking status