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MAC & Bronchiectasis | Last Active: May 31, 2023 | Replies (88)

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@mdf

I was reading your posting in this thread about the genetic testing for cf you had performed through NJH. First of all, I hope that you received good news once your received the results instead of a diagnosis of cf. I just returned from there and while I was there, much to my surprise at age 67, I also tested positive for CF with chloride reading of 64. They told me it would be two weeks to get the results from the genetic testing. It has been a little over two weeks, and I am becoming restless from not knowing the results. I am hoping you could tell me how long it actually took to get your results back and were they reported on the portal or did you have to wait to get a call from your doc? Secondly, and I know this is personal and please do not feel like you need to answer if wish not to do so, if your test returned positive, how are you doing with the diagnosis? What steps are you taking now you know? Any advice for someone who may just be a few weeks behind you in being diagnosed?

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Replies to "I was reading your posting in this thread about the genetic testing for cf you had..."

Good morning.
The results took a few weeks. No they don’t put the results into the portal. I got a message from the doctor that it was negative. I was relieved. She told me it happens that it is a false positive. I hope this helps. Hang in there. The waiting for results is always hard.
I still don’t understand why i was positive. I thought it was odd. Wishing you good results.

As I recall it took a few weeks to get the genetic results. I was not given any other test for CF. Just the genetic and my pulmo did the most advanced genetic option (very expensive). My results were negative and chances are yours will be too. It is very rare to get a diagnosis so late in life. But if they are positive there are new options now for CF that can make a big difference.