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2789+5G>A /DF508
- Thread starter ambjmbmrb
- Start date
Both of my children have those same mutations. I know it isnt that common. My son is 21 and had pancreatitis since the age of 12 and suffered for years but his lung functions have always been 100 or more. My daughter hasnt showed any pancreatitis symptoms (thank god) but her lung functions have been as low as 62. As of now she is at 95%.
I have 2789+5G>A / DF508 -- I was diagnosed at 18 (I'm 21), and am pancreatic sufficient. I was always coughing / had infections but it wasn't until my doctors referred me to a pulmonalogist that I was diagnosed. I'm currently studying abroad in Buenos Aires so don't have my exact numbers, but I have very strong lung function -- go in about once or twice a year for IV antibiotics.
janicetriplets
New member
I have the same mutations, I was diagnosed at 32 (I'm 39) I always had severe pancreatitis starting when I was 27 but suffered with stomach pain all my life. I'm still pancreatic sufficient. I never had issues with my lungs till i was 16 that i started coughing a littlle bit and I was diagnosed with asthma in those days. When I was 32 I started with hemoptisis and I was diGnosed with micob abscessus so they put everything together and they ' ve got to the conclusion that I had cf confirmed by a dna test. I had triplets a year and 1/2 that are the life of my love!! Im currently on iv's with a picc line for the first time , i started 2 weeks ago. Last appt my pft were 63 but before this exacerbation my baseline was 75-77. Hanna I grew up in Rosario Arg, lived there for 26 years!
Thank you all so much for your replies. My 8 yr. old, Jen, was diagnosed at 2 yrs. old....however it was not due to any health issues. We had been referred to a genetics counselor after a few miscarriages to give us "peace of mind" in trying for our 3rd child. The counselor did blood tests and found I was a carrier.....after testing my husband and finding he was a carrier as well, we tested our two children. My son is a carrier (10 yrs. old now) and daughter was diagnosed. Crazy huh?
Her lung function has always been between 85-100. Recently cultured MRSA and after the Bactrim didn't clear her culture they put her on Zyvox. We will complete our 2nd and final week of meds this Thurs. Hopefully her culture will be clean OR we will experience our first hospital stay on IV antibiotics.
Jen was on enzymes for 6 yrs until I finally put my foot down trying to figure out why her stools were so bulky and she was constipated because it didn't make sense! They tested her stool and found she is pancreatic sufficient. She now has normal stools after quitting her enzymes, which brings me to ask you AUG19DW are your kids pancreatic sufficient or insufficient? Do you know if that makes a difference in whether they can get pancreatitis? Jen has not experienced any stomach issues to date.
Hannah, have you had trouble with stomach pains as well?
And Janice, what is hemoptisis and micob abscessus? I am going to google that right now.
So grateful to find others with her mutation. I know that every person is different even with the same mutation, however it at least gives us some guideline of what to look for and be aware of.
Have any of you had experiences culturing MRSA?
Thank you all again so much! I will keep you all in my thoughts and prayers.
Maria
Her lung function has always been between 85-100. Recently cultured MRSA and after the Bactrim didn't clear her culture they put her on Zyvox. We will complete our 2nd and final week of meds this Thurs. Hopefully her culture will be clean OR we will experience our first hospital stay on IV antibiotics.
Jen was on enzymes for 6 yrs until I finally put my foot down trying to figure out why her stools were so bulky and she was constipated because it didn't make sense! They tested her stool and found she is pancreatic sufficient. She now has normal stools after quitting her enzymes, which brings me to ask you AUG19DW are your kids pancreatic sufficient or insufficient? Do you know if that makes a difference in whether they can get pancreatitis? Jen has not experienced any stomach issues to date.
Hannah, have you had trouble with stomach pains as well?
And Janice, what is hemoptisis and micob abscessus? I am going to google that right now.
So grateful to find others with her mutation. I know that every person is different even with the same mutation, however it at least gives us some guideline of what to look for and be aware of.
Have any of you had experiences culturing MRSA?
Thank you all again so much! I will keep you all in my thoughts and prayers.
Maria