Hi, everyone.
I'm fairly new here, had posted on the Adults with CF board, and it was suggested that I post on this board, so here I am!
I'm a 54-year-old female and was just diagnosed with CF in early September. This came as a total shock to me because nobody ever mentioned CF to me while I was in the hospital for my 5th hospitalization since February 1, 2006 (32 days total between now and then) for pancreatitis. (The last pain-free day I can recall was January 31, 2006.)
Although my pancreatitis was blamed on high triglycerides, during my last hospitalization my triglycerides were actually a little below normal. I guess the docs decided to try to find the true cause for my repeated attacks that required hospitalization, plus the countless others I had at home and tried to self-medicate.
I have had problems with my lungs (was diagnosed with "interstitial pneumonitis" during my first hospitalization this year), had usually required oxygen in the hospital and was ordered twice to have it at home. Lung problems aren't the biggest problem I have, though, at least to my knowledge. (I never really felt any sense of respiratory distress or difficulty, but my chest x-rays between now and then are slowly deteriorating.) It's my pancreatitis that is my biggest source of excruciating pain, and that pain has been getting worse, particularly over the last week.
I'm coming to you and this board a little more than two weeks after I was officially "notified" of my diagnosis. While I was in the hospital, nobody mentioned -- not even ONCE -- the words "cystic fibrosis" to me. On October 2, almost a month after my hospital discharge, out of the blue, I received a letter from my primary care provider, advising me that she just got the test results (dated September 6) and that I have a "mild form" of cystic fibrosis. My ignorance of this disease originally led me to think that having a "mild form" of cystic fibrosis sounded like being a "little bit" pregnant, but apparently a mild form means just that (I think).
Needless to say, I would have appreciated some warning or the opportunity to discuss this with a health professional before they did the DNA testing. I obviously have many, MANY questions regarding this disease.
I hope to learn a lot more by visiting this board and receiving your input. Two posters here have already been a huge help to me, and I appreciate it very much. As much as I feel I'm almost an "expert" on pancreatitis (always seeing cystic fibrosis as a possible cause but never thinking it applied to me as a 54-year-old adult, so I immediately dismissed it as a possibility), I honestly have not been able to "wrap my brain" around the disease of CF; the more I read, the more confused I become (particularly when trying to understand DNA tests; In reviewing the DNA test results, I am reported to have one copy each of the Delta 508 and R117H mutations, along with one copy each of the 7T and 9T variants, whatever any of this means!).
Anyway, I plan to call the CF Center closest to me on Monday to set up an appointment with a physician and see where we go from here.
In the meantime, I'm very happy to have found this site and look forward to learning and understanding as much as I can about this disease, hopefully with your help.
Hope you all have a great weekend.
Marlene <img src="">
