My late diagnosis

Since someone has asked about how I came to be diagnosed so late with CF, I thought I would write about that tonight.

All of my life I had a cough. I think the doctors mostly attributed it to allergies. By high school I was having many episodes of bronchitis and in college I started coughing up blood. I kept telling my doctor that something just wasn't right and I thought I should see a pulmonologist and he said that wasn't necessary, that I just had allergies.

In 1987 we were married and my husband said I needed to switch to his doctor because he didn't think my coughing, and coughing up stuff, all of the time was normal. That doctor immediately saw a problem and sent me to a pulmonologist where I was diagnosed with Bronchiectisis. For years I was treated for extensive bronchiectisis without responding to treatment.

I then started having continual sinus infections. They were like my bronchitis, where I would barely be off the antibiotics for a few weeks when another infection would start in.

In 2003 I was sent to Johns Hopkins because of my diminished breathing. When they went into my lungs they found a lot of pseudomonas bacteria. They admitted me for two weeks of IV antibiotics and sent my blood to a genetics lab because pseudomonas is mostly found in CF patients. My test came back positive, naming my specific CF genes. I have what my doctors call "Adult CF". My symptoms manifested themselves more as time went on, unlike the "childhood form" where the symptoms appear right away (which is the form Tricia has, wife of CFHusband).

Basically, I was misdiagnosed by doctors all of my life. Even now, many doctors are not aware that someone my age could have Cystic Fibrosis.

At this point I do not respond to any oral antibiotics. Because you can't totally erradicate pseudomonas, I need to have IV antibiotics periodically. My lung capacity runs between 35-45% of what a female my age/size would be (if that makes sense). I am on oxgen at night now, and during the day when I walk for more than a few minutes or do anything active (i.e. vacuuming).

Now you know the story of my medical life. Aren't you glad you asked?

I'm going to go watch the VP debate now. Go Palin!