Wednesday, June 2, 2010

Mild CF II

After posting a blog about having mild CF, PicklePits left me a comment with several follow up questions. She has two children with mild CF and has been following my blog to learn about what having mild CF really means. I thought about sending her a private message back, but thought others might be interested in the answers too. (This blog may contain TMI)

Question 1 "When/what is your earliest memory of a CF related health issue?"

Answer: For most of my teenage life I coughed up mucus. I was always at the doctors. I must of had three dozen sputum cultures when I was in Jr. High/High School. I was on antibiotics frequently. The problem here was normal sputum cultures do not show CF bugs, so this information was being missed. Also, I was put on non-CF antibiotics, so they really never worked for me. I really don't remember couching much until I was around 12 or 13.

Question 2 " Do you recall any CF related changes (good or bad) that came along with puberty?"

Answer: I never really thought about it, but YES! I would say around 6th grade is when my symptoms really started to show. I remember one time telling a girl at school that I had a cold for three months. I think there was an assumption that the symptoms were allergy related. I didn't have more sever symptoms until I was a little older with chest pains at age 17 and couching up blood at age 18. Keep in mind, I didn't know I had CF during this time, so there were no preventative treatments in place at this point.

Question 3 "Are you able to have children?"

Answer: The doctors have told me I am healthy enough to have children. There are some fertility complications with CF. For women, thick cervical mucus can act as a barrier to sperm. I do not know if this is a complication for me. An interesting fact with CF male infertility. As you may know, 98% of males with CF are infertile. Of the 2% that are fertile, 70% have a "mild" CF mutation.

Question 4 "How has CF clinic accommodated your health needs? Has the clinic adequately addresses the issue of being a mild CFer?"

Answer: This is a hard one to answer and I think would make a good blog topic on its own. I'll address separately in a few days.

Questions 5 " Have you met other mild CFer? How have their health issues compared to yours?"

Answer: Everyone I now know with CF is through social networking via the internet (blogging, forum, facebook, etc). From my observations, other CFers who are considered to have a mild case are all over the board how they compare to me. Some have higher PFTs, yet are on more regular medication than me. Some have been hospitalized a few times, where I was only hospitalized once (and it was only an overnight stay, not a traditional stay). Most have some type of chronic sinus problems. Some (but not all) are pancreatic sufficient. Most mild CFers seems to be able to carry on life as normal with full time jobs, college, etc. Also, there are not a lot of people who state their condition is mild. Where do doctors draw the line with mild CF and non-mild? I don't know. We all have our own stories with this disease.

I'll add one more observation about my disease compared to others: I am definitely on the higher end of "healthy." Almost every CFer (mild or non-mild) I meet has lower PFTs, is on way more medications then me, is frequently hospitalized, and must dedicate much more time to care and treatments then I do. I am very lucky under the circumstances.

More to come, stay tuned!


  1. Christmas in June~I love it! Thanks for posting, Colleen.

    Our kids are so young (2 and 4 years old) and so far don't show any cough, they never culture anything, both pancreatic sufficient---It's a good place to be, but I often feel as though Im waiting for the other shoe to drop. There's so much uncertainty and we seem to be a pretty unique case for our clinic...

    It was the younger of the two who was diagnosed first...our four year old was actually a false negative on his newborn screen...had the 2 year old not gotten diagnosed (via the screen and a slew of inconclusive sweats which finally ended in a genetic test) we would have never, EVER guessed CF for either kid. Trying to get information out of the kids is tough because they're still too young to be able to articulate so we just watch and wait, and wait, and wait...fingers crossed the whole time of course and following clinic recommendations to the letter. The only mild cfers that I've found are online...none from our actual clinic in Des Moines. Aaah, where would I be without the internet :-)

    Thanks for an informative post! You did a great job of laying it all out there. I really appreciate your effort!!


  2. I was just reading back on your posts and saw this. When I was at your age I would say my health condition was about like yours. When I was your age I was still able to work, at age 36 I could still chase after a 2 yr old and could go for walks altho I would then cough until I would *regurgitate!" By the time I hit 40 I was having more problems I'm 50 and I am on IV's twice a year. Not that you will follow the same path, but your history is so similar to mine from what I've read.