New Adult Diagnosis - Awaiting Sweat Test

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meredithj

New member
Hi everyone - I am reaching out since it seems like resources for adults being diagnosed seem few and far between.
I am 36 years old and just recently have been tested for CF. We did the blood test first, which showed positive for 3849+10kbC>T AND Delta F508 mutations.
I have a sweat test scheduled for next week. My pulmonologist did not seem to think I definitely had CF, even though the bloodwork shows both mutations.
About 15 years ago I had what the doctors thought was just the flu, which led to pneumonia, heart failure and lung failure. I was in the hospital for several weeks and also home with oxygen. No word of CF then.
In early September I had a bad case of allergies and was sick again. (No hospital this time) It took a while to get over it, which is what led to all this testing!

None of the major symptoms have shown up for me (nutrition, pancreas etc.) - it seems to be all breathing and lung related.

I was wondering if anyone else has gone through this so late in life?
 
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kenna2

Member
Welcome to the forum, sorry about all you went though to get your diagnosis. While most CFers are diagnosed at birth, some are diagnosed later in life too. I was diagnosed at 7 and I know a couple people on this forum who were in their 40s or 50s before they got their diagnosis. Honestly, the later your find out you have CF the better. That means your symptoms are milder or haven't really kicked in yet to where it affects you. This really is a great time to be alive with CF because there are so many new drugs and what not that are coming out to treat us. You can live with this disease, there's just a lot of maintenance that goes with it. It's also extremely important that you start going to an accredited Cystic Fibrosis Clinic. The Cystic Fibrosis Foundation site can tell you where the closest one to you is. Everyone here on this forum is extremely wonderful and helpful so please feel free to ask any questions. We're all in this together!
 
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ymikhale

New member
My dd has exactly the same mutations as you. she was diagnosed at birth thanks to systematic screening. she also has only respiratory symptoms but it ssems that on respiratory side she is just like everybody else in spite of the milder second mutation. Sorry to hear about the diagnosis but you will be treated much better than without it.
 
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Printer

Active member
You are not alone, there are many of us older CF patients. There is a woman in Calif who was dx in her late 80s and is now 94. I was dx at age 47. You need to be seen at an APPROVED CYSTIC FIBROSIS CLINIC by a CF SPECIALIST. Only there will your mutations get the proper treatment and where you will get the most up to date drugs. Go to cff.org to find a center.
 
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LateTraveller7

New member
meredithj said:
Thank you everyone! I have not received the results of the sweat test yet, so we will see what happens! :)
Click to expand...
My understanding is the sweat test is not reliable for CF adults. My Sweat teats were ' inconclusive' when I was tested for CF in my 20s and 30s. (my sister had CF full symptoms, thats why they tested us siblings).
The DNA tests they did on me in my 20s in Canada could not identify any my CF genes. I just had bronciectasis, asthma and "looked bit thin" (malnutrition) and flu time I got very sick with loads of sputum. But I led a "normal' life (in hindsight I should have been hospitalized when I was sick a few times, but stupid me thought it was just bad flu. ) It wasn't til I was 40yrs old with the new DNA tests, that revealed all my CF genes. I would just rely on official DNA test.
 
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