Cystic Fibrosis Forum (EXP)

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  1. K

    Ok, I have Cystic fibrosis

    I was diagnosed as mild CF - 12 years ago in Toronto, Ontario. I'm now 49 years old. Diagnosed when I was pregnant. Are you going to St. Mike's or Sick Kids for your appointments? I went to Sick Kids and am now treated at St. Mike's Downtown Toronto. Great group of doctors there. If you...
  2. K

    F508del and R117H in our newborn

    Hi Rachelh79, I'm a 49 year old female with the same gene combination as your daughter. I was diagnosed at 37. Do you live in the US or Canada? I was diagnosed when I was pregnant. Growing up I had difficulty gaining/maintaining a healthy weight but was relatively healthy. Had lung...
  3. K

    How much do you weigh, how tall are you, and how old are you?

    Female Age:48 Weight:155 lbs Height:5' 10 1/2" Lori
  4. K

    First Time Post

    Hi Pootersmom14, I've been on the forum for a couple of years myself. From Canada - diagnosed at age 37 when I was pregnant. I'll be 49 in February. Like Printer says there are lots of us "older" CFers. Welcome to the community. Lori
  5. K

    is home birth even an option?

    Here's a link on CF pregnancies and complications. http://ca.indeed.com/viewjob?jk=40a4abf053b09c35&q=Employment+Office&l=Mississauga%2C+ON&tk=182upqpgf0nii5o6&from=web Ms. Rowan, why is it so important to have a home birth? I'm not an expert ...just a mom of 2 and I have CF. I had my last one...
  6. K

    is home birth even an option?

    I would have to agree with Anien2. I'm a CF Mom of 2. I delivered both in the hospital. I had complications with my first and the Dr. had a difficult time controlling my bleeding. They were able to get it under control and I avoided blood transfusions etc. I have a friend who was the same age...
  7. K

    Anyone diagnosed after 30

    I was diagnosed at 37. I'm now 48. My gene combination is D508 and R711H.. I had lung issues all my life. Went through genetic counselling when I was 37 and pregnant. I have 2 healthily non CF girls now 6 and 10. My husband was tested and he doesn't carry the CF gene. Both my girls are...
  8. K

    Health decline after becoming a mother?

    Gunelle - If you want any further information feel free to send me a private message. I can answer any questions on this thread as well. Welshwitch - I certainly have time to chat further. Send me a private message and I can answer any questions. Or if you are on Facebook we can chat...
  9. K

    Health decline after becoming a mother?

    I'm a 48 yr old mother of 2 children - 9 & 6 years old. The lack of sleep certainly is something that I suffered from when they were younger and even now when they have a rough night. More germs, less time to workout/therapy etc. It's all worth it I must say. I don't have a great support...
  10. K

    Does anyone experience low blood pressure

    I'm a 48 YR female - diagnosed at 37. I have very low blood pressure and have for as long as I can remember. For an adult normal is 120 over 80. I'm 90 over 60 or lower on a regular basis. It's my norm. When I was younger I would faint occasionally. I was quite underweight and if I got up...
  11. K

    14-year old just diagnosed

    Hi Fel, I'm a 48 year old woman, diagnosed at 37. My gene combo is D508 & R711H. My lung function is 92%. I started PEP therapy this year and have been on and off antibiotics for the last year. I've had 2 healthy children that are both carriers (no CF) No issues with my digestion...
  12. K

    DeltaF508 and R117H

    I have the same gene combination as you. I am 47 and was diagnosed at 37. I had always had lung issues growing up. My lung function was 107% 10 years ago and now it's 92%. I'm now starting daily physio and should exercise 5 times a week -cardio. In the last 10 months my lung function has...
  13. K

    does anyone have the delta f508 and the rh117

    Hi Marina, I am starting some breathing treatments and exercise. I'm told the key to keeping our lungs clear is exercise. My goal is 5 days a week for 45 minutes. My weight when I was younger was always low but not related to CF. I was just really thin. I'm 5'11 and was always around 110 to...
  14. K

    does anyone have the delta f508 and the rh117

    Hi Marina, I have these genes. I live in Canada. I'm a 47 year old woman and was diagnosed at age 37. My CF symptoms are mild. I'm pancreatic sufficient so I don't take enzymes. How old is your daughter?
  15. K

    Finally Home At Last

    Welcome home Zach! What wonderful news. You must be so happy! How are you feeling?? Looking forward to catching up sometime on chat! Take care, Kittenface
  16. K

    CF awareness and advocating for organ donation

    Fabulous Blog Jessica. Wishing you all the best. Playing "Keep Breathing" as I'm typing this message :) Kittenface
  17. K

    Are extremely sweaty palms and soles of feet seen in CF.

    I confirmed with my CF doctor and the wrinkling of hands is linked to CF and CF carriers. Here's a link I found: http://www.ncbi.nlm.nih.gov/pubmed/20560957
  18. K

    D508/R117 mutations

    Hello Everyone, Well I said I would book the appointment and I did. I met with the CF clinic today and had all of my tests. My blood work was good - everything was normal including my Gluc. testing for CFRD. My FEV testing was still very good - 95% however when I was there in January this...
  19. K

    Are extremely sweaty palms and soles of feet seen in CF.

    I forgot about your question on being lethargic? I've been feeling very lethargic these last few months. It could be the lack of exercise on my part. It goes hand in hand. If you exercise you feel better but have to get started (for me). I need a lot of sleep and always have. I need at least...
  20. K

    Are extremely sweaty palms and soles of feet seen in CF.

    I have CF - age 47 - D508 & R117, considered mild mutations. I have very sweaty hands, so sweaty that when I want to shake someone's hand I must first wipe them discretely on my suit. I'm in sales and I'm constantly shaking hands. On another note my hands and feet wrinkle very quickly in...
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