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Thread: Possible New Diagnosis at 51 - Have Questions - Please Help

  1. #1

    Possible New Diagnosis at 51 - Have Questions - Please Help

    I will try to keep this as short as possible. Background follows, or skip right to the main questions below. My apologies. I am a 51 year old male. Went to ER for blood in stool (10 years post colon cancer) and found obstructing kidney stone. They did an abdominal CT. During the ER visit, I vaguely remember them mentioning pneumonia. After treatment and discharge, I got my CT report from patient portal and for the portion of the chest that was captured on the abdominal CT, it says "Tree-in-bud opacities as well as mild groundglass opacity partially imaged at the superior segment of the left lower lobe. Mild bronchiectasis is also seen. Elevated right hemidiaphragm." After Googling this, I thought it was worth checking out. I called the pulmonary department at Johns Hopkins, which is where I have been treated for 10 years. They said that they would review the records and call me back about an appointment. The scheduler called me and made an appoint for me six weeks out. Researched the doctor and the only thing he does is adult Cystic Fibrosis. After many hours of obsessive Google, I do have many of the symptoms.

    My questions are:

    1. How common / uncommon is it to be diagnosed at age 51? I have had 20+ cancer screening CT's in the past 10 years, and other than mild pleural thickening the past two years, nothing abnormal.
    2. I have read that in something like 98% of males, the vas deferens is absent or blocked. I have three children and had no issues conceiving. Is that possible with CF or with a late adult diagnosis, does the reproductive not happen until later in life.

    Thank you in advance for your help.

  2. #2
    Diagnosis of cystic fibrosis is becoming more and more common at older ages. This is due to a number of reasons. First, the ability to detect the genetic mutations that cause cystic fibrosis has grown immensely. In addition, more physicians have cystic fibrosis on their radar especially with atypical presentations. I was diagnosed at age 40. There are varying degrees of cystic fibrosis (based on the type of genetic mutation) so its possible to have it and not have all of the severe symptoms of someone who has a more severe genetic mutation. Based on the information you have provided above and has been provided to you, I would say that you cannot make the diagnosis of cystic fibrosis based on that only. "Tree-in-bud" opacities are more commonly seen in atypical mycobacteria infections like mycobateria avium. This can be seen in cystic fibrosis but is certainly not exclusive to cystic fibrosis; same thing with bronchiectasis. You will definitely need additional workup including genetic testing and likely a sweat chloride level. I understand that all the waiting is unnerving. Hope you get some answers soon!

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