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These are from Jenny...she will comment!
Salt and light,
Jeanne
These are from Jenny...she will comment!
Salt and light,
Jeanne
Cystic Fibrosis Forum (EXP)
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From Jenny she wants you to know...
- Thread starter Imogene
- Start date
Aboveallislove
Super Moderator
Hey Jenny!
Sorry, I totally forgot to email re the FDA comment. I'll shoot you a note later today. And yippee (again!) on this amazing, happy-weep-inducing picture!!!
Sorry, I totally forgot to email re the FDA comment. I'll shoot you a note later today. And yippee (again!) on this amazing, happy-weep-inducing picture!!!
Sorry guys!! I was so busy at work when Jeanne was so sweet enough to upload these for me and then we went on vacation with my inlaws for their 50th wedding anniversary!! Crazy busy!! Anyhow I wanted to share with you guys the amazing results that we have gotten back from Abby's last bronch. The first picture is from when she was 3 and you can see all the mucus and scarring and just plain old nasty lungs. Not sure how you look at the new lung pic but if you can click on it I think it will show the beautiful healthy smooth pink lung tissue that she now has!!! We did a bronch because her lung function has been dropping since August with no known reason. She is not ill and her lungs sounded amazing. Well now we know that they look amazing as well! She has been on Kalydeco since June 2012. I am not saying that Kalydeco is the sole reason for this change. I am no doctor...I am just a simple mom that can't believe what she is seeing! I just wanted to share. We are still trying to figure out why her lung function is dropping. The only thing she cultured was H-flu which she cultures off and on all the time. Her dr's do not feel like that is the cause of her lung decline. They do not seemed very concerned with it after seeing how wonderful her lungs looked. They too were extremely surprised by what they saw. They didn't so much verbally relay that but they didn't have to because I could see it in their faces!! Wonderful sight!!! I hope this gives you all some hope that everything is getting better. And I am so excited about the trials coming in 2016. An actual cure would be out of this world amazing!
TreasureGoddess
Member
WOW Jenny, I just got chills!!!! SO very excited for you guys. You gave me such hope long ago when you first posted about Abby having less infections, going to the hospital less and overall feeling better when she started Kalydeco. SO exciting to see real live proof that her lungs are getting stronger!!
Hope they figure out the lung function thing soon too!
thank you so very much for sharing!!! HUGS!
Hope they figure out the lung function thing soon too!
thank you so very much for sharing!!! HUGS!I don't understand. Is this showing that Kalydeco is not only stopping the progress, but reversing the damage? What I have been told is that the drug will not reverse existing damage, but this seems to indicate otherwise. Also, I thought that it was not effective for DF508. Again, what I am seeing here indicates that it is helpful for DF508. Please clarify. This sound like it may be promising for me as well.
Aboveallislove
Super Moderator
I know someone else with cf had damage gone that the doctors thought was irreversible. Not sure if it is actually reversing damage or th doctors are wrong on whether damage is reversible or not in the first place. And Jenny again so happy for you and Abby!
Sorry guys I've been so busy that I haven't checked back in! We received the final culture results and the only thing that she grew was the H-flu. They treated her with augmentin and prednisone in case of inflammation in the smaller airways and we will go in on the 8th to see how she is doing and get a game plan from there.
Angelo...I'm not a dr so I don't know if Kalydeco is reversing damage or maybe just more keeping her healthy enough for the lung tissue to repair itself. I don't know...but I do know her lungs went from YUCK to WOW. And she has done WORLDS better since being on Kalydeco....whatever it's doing....this mom is a huge fan...and I believe that everyone should be very hopeful! I just wish everyone could try so that everyone could see if it could do the same for them. We just were lucky that her insurance covered it. We are very very very blessed!
Angelo...I'm not a dr so I don't know if Kalydeco is reversing damage or maybe just more keeping her healthy enough for the lung tissue to repair itself. I don't know...but I do know her lungs went from YUCK to WOW. And she has done WORLDS better since being on Kalydeco....whatever it's doing....this mom is a huge fan...and I believe that everyone should be very hopeful! I just wish everyone could try so that everyone could see if it could do the same for them. We just were lucky that her insurance covered it. We are very very very blessed!
Aboveallislove
Super Moderator
Hey Jenny,
lim so sorry...totally for to email you re fda stuff. I've heard stuff similar from a mom with a little n on combo for conti used access and how that little help made such a huge difference! Just learned on Wednesday 6-11 is fully enrolled so hoping DS will be on by year end! Only a year after I thought we'd get it, but s blessed to be so close and like you said so much hope. Hugs to you and the crew..
lim so sorry...totally for to email you re fda stuff. I've heard stuff similar from a mom with a little n on combo for conti used access and how that little help made such a huge difference! Just learned on Wednesday 6-11 is fully enrolled so hoping DS will be on by year end! Only a year after I thought we'd get it, but s blessed to be so close and like you said so much hope. Hugs to you and the crew..