- I cough everyday. I clear my throat all the time...the more I talk the worst it gets.
- I do treatments for mucus clearance. My first choice is exercise and I use an acapella. I also have a vest, but I only use it when I am below my baseline.
- I have major sinus problems. I know I will battle this for the rest of my life. In turn, I do sinus rinses every day, twice a day.
- I take three medications regularly. They are all to control sinus infections/inflammation.
- I had sinus surgery in 2008.
- I go to clinic 4 times a year.
- I have above average PFTs, except small airways.
- I am pancreatic sufficient. I do not take any enzymes.
- My normal antibiotic is oral Cipro. A three week treatment when I am below baseline is usually the best treatment plan that works.
- I have never need IV antibiotics.
- I have only been over night in the hospital once related to CF. The stay was for one night.
- I live a pretty normal life. I am married, have two dogs, I am a homeowner, I work full time, and I have a college degree.
- I know I am lucky to be healthy and have a CF that is mild.
Sunday, May 30, 2010
Mild CF
Last week I posted information about my CF mutations, including one mutation associated with mild CF. I thought writing a blog about mild CF would make a good blog topic. Having mild CF means:
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Wow, I don't know what to say Colleen other than THANK YOU!!! I can't tell you what a relief it is to have such a clear picture of what "mild cf" looks like. Of course, I'm aware that each case is unique but at least you have given me an idea of what we could be seeing down the line.
ReplyDeleteGreat post...thanks so, so much!!
Thank you so much for posting this information. My two sons share the exact mutations as you and I am so excited to see what their lives might be like down the road. My older son has severe sinus issues as well and has already had surgery at just 2 years old. When we were told they would have "mild" CF we had no idea what that meant, now we do. Thank you again!
ReplyDeleteA few questions come to mind now that I've had a chance to read this blog half a dozen times :-)
ReplyDeleteThey are...
1. When/what is your earliest memory of a CF related health issue?
2. Do you recall any CF related changes (good or bad) that came along with puberty?
3. Are you able to have children? Please forgive me for asking this - you need not respond if you feel it too personal.
4. How has CF clinic accommodated your health needs? In other words, do you feel as though clinic has adequately addressed the issue of being a "mild" cfer?
5. Have you met other mild cfers? How have their health issues compared to yours?
Again, thanks so much for your openness. I've felt so alone since our children were diagnosed. It's reassuring to hear from someone who is rowing a similar boat.
THIS.IS.A.GREAT.POST. :-)
ReplyDeleteInteresting post.
ReplyDeleteI wasn't PI until I was in my mid-40's. Your very blessed!