Search results

  1. J

    Excellent Presentation on Muscle Loss & CF - I think a must read

    Hey guys a little while ago we were blessed enough to be invited to a fantastic CF meeting with 2 very incredible Dr's. I wish I had the audio to go with this...but I did get this slide and if you have a minute I highly recommend you take a look at it. It suggest that Creon does not dissolve...
  2. J

    Bryan/College Station Texas Area

    Hi all!! There are several of us in and around Bryan-College Station that get together every now and again. If you live around this area and would like to get to know some CF moms and dads please feel free to give me a shout. We have a really wonderful time and we also learn so much from one...
  3. J

    Cowardly Private Messages

    I received 2 spam emails here that were very inappropriate. Did anyone else receive these? It is totally disgusting that someone would come here and do this to this community. Just wondering if anyone else got these as well or if I was just lucky.
  4. J

    Looking for anyone who has tried to get Kalydeco off label

    ***KALYDECO OFF LABEL*** We are trying to get together some information to help CFer's in the future get the help they need. If you feel comfortable sharing your information for the benefit of our wonderful CF community please email me at We are looking for anyone who has...
  5. J

    Today show and Kalydeco

    I can't believe that no one has posted this yet!!! If you haven't seen this need to take a minute and watch it!! This is a story about how siblings that have the same Dr, same CF genes, and same health insurance got two totally different responses to their Kalydeco request...
  6. J

    Abby Clinic Update

    Abby 1 year Kalydeco Clinic Update I have updated everyone on facebook but I haven't been on here in quite some time because I have been on my first Vacation since Abby was diagnosed. I actually got to take my full 2 weeks and didn't have to spend my entire vacation at the hospital!!! It was...
  7. J

    Growth Spurts and BMI???

    Ok so I am trying really hard not to get too concerned about this but Abby is not gaining weight. She is growing taller but is keeping pretty much the same weight since March 1st. So is this normal?? Her BMI has went from 56% to 44%. Will she play catch up once she stops growing taller...
  8. J

    Great Strides Houston

    Nothing Earth Shattering or anything I am just still reeling from what a wonderful job Kim and all the volunteers that made Great Strides Houston such a success!! I have never had so much fun with my family and friends!! They truly rocked it this year. They had 3 clowns that did balloons...
  9. J

    Female Question

    OK ladies....Abby has had labial adhesions since she was little. It's where her female parts adhere to themselves and close up. My cousin just mentioned to me that her child has them. I have always had CF in the back of my mind when talking to her and even suggested that she get her daughters...
  10. J

    Sweat Chloride of 44 ??????

    Ok so my friend that has the 20 month old took him for a sweat test yesterday and they had trouble getting enough sweat. What little they did collect came back with a 44. Ok friends recap: He's weight is 80% and falling his height is 45%, he has had 3 sinus surgeries, has a PICC line right...
  11. J

    DNA guilds? What is that?

    OK color me stupid but I have no clue what that means. I even googled it and still have no idea LOL!! So just in case I'm not the only one out there who is clueless...what is DNA guilds? Thanks :)
  12. J

    Has anyone had a negative newborn screening yet still have CF?

    I am asking for a friend...has anyone had a negative newborn screening but then had a CF diagnosis? Thanks!!
  13. J

    This little girl needs our help - please take just a moment and read Let's show this beautiful girl that we care! Who better to left her up than us? At just 10 years old you know how much just a little encouragement can lift your spirits and give you the strength to push through. Thank you!!
  14. J

    Abby update

    So she actually had her clinic a little while ago but I wanted to wait until I had her throat cultures before I posted. She has been under the weather since mid September with cold type symptoms, and she is finally getting over it I am happy to say!! Her PFT's were not so great because she was...
  15. J

    This is really cool!! More possible cure prospects!!
  16. J

    Prayers for sarah

    Sarah.. 10 years old with CF just got the call from CHOP about new lungs..prayers that they are a good match and for the donor family... A friend of mine just posted this. I will try to find out more, but in the mean time, please help me pray for these family's. I can not even begin to...
  17. J

    Another Great Abby Update!!!

    Abby's nurse just called with the results of her throat culture and her liver function. She normally keeps MRSA, h-flu, and strep-pnuemo on occasion. Today her liver function is normal and her throat culture is NORMAL!!!! Praise God!!!! Lets see what her dr has to say about this :) So...
  18. J

    Gene Therapy Removed from Drug Pipeline

    I just read from Frank that the CF Foundation has removed the Gene Therapy from the Drug Pipeline. I looked at it 2 weeks ago before Abby's appt and it was still there. Very Sad news!! :'(
  19. J

    Scott & White Temple, TX - opinions please!

    Can anyone tell me their personal experiences and opinions about this CF center? We are thinking of a possible switch. But really want to know what others think of this clinic. Any info is greatly greatly appreciated!!! Thanks so much!!
  20. J

    Can sweat chloride numbers drop on their own?

    Hey guys I am just wondering if sweat chloride numbers can drop by 12 points or more on their own? We are going to see Abby's dr Friday and I want to be prepared for whatever he might say. Our last 2 conversations he was very negative and explained away everything. I hope that he surprises me...