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  1. J

    6 years post transplant TODAY!

    Happy anniversary. I am glad that you are taking the time to reflect on the gift you received and the gift you have passed along with your joy. I hope you have many more anniversaries to come.
  2. J

    Transplant questions and teenagers

    OK, My son and I have been referred from our CF specialist to a transplant specialist and they are recommeding a transplant for his lungs. I have so many questions that they answered but I am having trouble believing them. Meanwhile my 15 year old son does not want a transplant because he...
  3. J

    Transplant questions and teenagers

    OK, My son and I have been referred from our CF specialist to a transplant specialist and they are recommeding a transplant for his lungs. I have so many questions that they answered but I am having trouble believing them. Meanwhile my 15 year old son does not want a transplant because he...
  4. J

    New Lungs

    Good for you. My son is going to see his doctor on Friday to see if he is at the point of going on a list for a lung transplant. I hope that things continue to improve for you and keep your head up so you can enjoy the sunshine in your life.
  5. J

    Doctor suggesting evaluation for transplant

    Well the good news is that Parker was discharged from the hospital Friday. He is tired and worn down but his lung function is better. His pulmonologist is going to qalk over his file to the transplant specialists after the 4th to see about setting up an assessment. More to come as we go.
  6. J

    Doctor suggesting evaluation for transplant

    Well, Parker is responding to treatments and the doctors seem to be backing off of the "transplant" talk. they are going to keep him in the hospital for another week or so to see how much more can be done to improve his lung function. I really get tired of this roller coaster of moving from...
  7. J

    Question about email I got from cysticfibrosis.com

    I got the same e-mail and I have not purchased anything either.
  8. J

    Doctor suggesting evaluation for transplant

    Thank you for that thought. I hope that Parker can been someone in that category.
  9. J

    Doctor suggesting evaluation for transplant

    Ochsner in New Orleans (I presume the main hospital). When Parker was origionally diagnosed my insurance did not cover Tulane (13 years ago) and he is close to his pulmonologist so we stayed there.
  10. J

    Doctor suggesting evaluation for transplant

    I have started working to wrap my brain around this. We have felt like we are in a hopeful foot race with research to out run the transplant option. VX-809 can not come to market fast enough. We are hopeful. One thing that helps me is my son's godfather is an ER doctor who gives me unpolished...
  11. J

    Doctor suggesting evaluation for transplant

    We are in the hospital in New Orleans for a "tune up" and Parker's doctor is talking about having him evaluated for a lung transplant once he is doing better. He wants them to make the evaluation to see if it is time to start looking at those ideas or do we still have some time to wait and see...
  12. J

    hospital bills

    <P>Ask for the reduction.  For the hospital they can write off a lot if you can work with them.  At Children's Hopspital in New Orleans (where my son is currently) they have a plan for those who meet a certain income level (double medicaid levels) they will cover deductables and fees that...
  13. J

    hospital bills

    <P>Ask for the reduction. For the hospital they can write off a lot if you can work with them. At Children's Hopspital in New Orleans (where my son is currently) they have a plan for those who meet a certain income level (double medicaid levels) they will cover deductables and fees that...
  14. J

    hospital bills

    <P><BR>Ask for the reduction. For the hospital they can write off a lot if you can work with them. At Children's Hopspital in New Orleans (where my son is currently) they have a plan for those who meet a certain income level (double medicaid levels) they will cover deductables and fees that...
  15. J

    Sometimes your the windshield and sometimes your the bug

    I just realized how tired I am.  The message title is supposed to be "sometimes you're the windshield and sometimes you're the bug"
  16. J

    Sometimes your the windshield and sometimes your the bug

    I just realized how tired I am. The message title is supposed to be "sometimes you're the windshield and sometimes you're the bug"
  17. J

    Sometimes your the windshield and sometimes your the bug

    <BR>I just realized how tired I am. The message title is supposed to be "sometimes you're the windshield and sometimes you're the bug"
  18. J

    Sometimes your the windshield and sometimes your the bug

    I appreciate the support.  I think Parker and I both got suckered into reading the press clippings a little too much about VX-770 and VX-809.  He was looking forward to that being a "cure" that he was hostile and resistant to following the routine of treatments and I was too tired to force the...
  19. J

    Sometimes your the windshield and sometimes your the bug

    I appreciate the support. I think Parker and I both got suckered into reading the press clippings a little too much about VX-770 and VX-809. He was looking forward to that being a "cure" that he was hostile and resistant to following the routine of treatments and I was too tired to force the...
  20. J

    Sometimes your the windshield and sometimes your the bug

    <BR>I appreciate the support. I think Parker and I both got suckered into reading the press clippings a little too much about VX-770 and VX-809. He was looking forward to that being a "cure" that he was hostile and resistant to following the routine of treatments and I was too tired to force the...
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