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Thread: Diagnosed at 36

  1. #1

    Diagnosed at 36

    Hi everybody,
    I joined the forum when i was diagnosed with cystic fibrosis this summer, but for some reason I couldn't post under my old screen name.

    I was diagnosed in July after my pulmonologist did a full panel of bloodwork. I had previously passed 2 sweat tests. I have moderate bronchiectasis and am culturing m. absessus. I spent 4 weeks on iv antibiotics this summer and got pancreatitus as a side effect. This was my drs big hint.

    As i said in the title i am 36yo. I had no idea anything was wrong with my lungs till i got pregnant with my now 4yo son(carrier-d1125h). At 5 weeks pregnant i had my first and only really bad bought of hymoptosis. I went to the hospital and they did a bronchoscopy which showed the infection. I had a regular pulmonologist that i saw after the infection was caught and she just assumed it was dormant and didn't treat it. When she retired she recommended i start seeing specialists at university of pennsylvania hospital. They finally figured me out and loaded me up on meds.

    As a kid (and adult) i was always really small, but i am ps so that is just genetic for me. I had a lot of sinus infections growing up and thought i has asthma, but the dr said i didn't. Everything was attributed to allergies.

    I am now on kalydeco(off label), clofazimine, azythromycin, ethambutol, albuterol, hypertonic saline, and Pulmozyme. They have helped a lot. My last fev was 67%. I haven't had one done since starting the kalydeco though. I am due for one soon and am hoping for a positive jump.

    It has been nice to meet you all and read about all of your experiences. You have all helped me more than you know already.

  2. #2
    Nice to meet you!!! I'm a fellow 36 year old CFer, although I was diagnosed at 9 months. It must be quite a shock for you! I'm sorry to hear about your diagnosis! Hope to get to know you on this forum.

  3. #3
    my story as well - diagnosed at 36 when I tried to get pregnant (my fertility guy said: "not even the best sperm can get thru that mucus" --> finally got diagnosed with CF with a gene test).
    great community here! Glad you got pregnant - I never did but we have two boys thru adoption :-)
    Watch your liver with Kalydeco!!! I am on half the normal dosage since my ALT and AST went thru the roof - same results - finally can sleep and do not cough all the time.

  4. #4
    Sdeuber-I'm glad to hear you are doing well. I will keep an eye on my liver while on the kalydeco. Thank you for the heads up. I went through fertility treatments also. I know what a hard road it is. I'm sorry it didn't work for you. I finally got pregnant with my 3rd iui and 5th cycle of injectable meds. I also had several losses through my journey. My re kept telling me he didn't know why i wasn't getting or staying pregnant. I'm so thankful to have my son, but it was a very difficult pregnancy. I really think it effected my lung function. I don't know where i would be on my cf journey if i hadn't gotten pregnant. I might have never gotten to the point of a diagnosis. There are some days that i still am baffled by the diagnosis, but i am thankful for all the new meds out there.

  5. #5
    Junior Member
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    Jun 2021
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  6. #6
    Senior Member
    Join Date
    Feb 2021
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