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Gary H 1978 911 SC
 
Join Date: Oct 2003
Location: Fort Worth Texas
Posts: 1,288
Elissa Was Getting Ready To Go To DUKE

So I believe we might not be going to Duke this Year. There is a new drug that her Doctors want her on that might change her life called Trikafta. It has been in the news and her team thinks she could get off oxygen in the day time and live a more active life. She would most likely sleep with oxygen at night to recharge her body. If Trikafta works it could mean postponing transplant for years.


https://www.youtube.com/watch?v=1g-8I0hIr4E

This video is of a girl a few months ahead of Elissa at Duke and explains if transplant is still necessary. Elissa knows her from some on line CF chats.

I do not know how you guys post a direct link to YouTube so be my guest.

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Gary H 1978 911 SC
Old 11-11-2019, 09:01 PM
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Location: Los Angeles
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I really wish her well. Like many of us have said before, I am speechless.

I couldn't watch half that video without tears running down my face.

I really hope this new drug work out well for her. Her chin's been up, but I will keep mine up for her too.
Old 11-11-2019, 09:18 PM
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aka 'vageen'
 
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That’s awesome. It looks like she can get back to living life!

The transplant will (may) happen when it needs to.

I continue to look forward to your posts Gary.
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Old 11-11-2019, 09:29 PM
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After watching the video, the drug sounds like wonderful news. Thanks for keeping us informed.
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Old 11-11-2019, 09:45 PM
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Thatís great news; really seems like a miracle drug.
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Old 11-12-2019, 03:08 AM
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Thank you Gary.....best to you all!
Old 11-12-2019, 03:15 AM
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I hope it works great for Elissa !!
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Old 11-12-2019, 03:24 AM
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I hope this works great for Elissa.
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Old 11-12-2019, 04:44 AM
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Wow, this sounds like great news to me. I assume anything that enables the delay of a transplant is a good thing.

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Old 11-12-2019, 05:19 AM
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That is really great news. Please keep us posted on how she does with Trikafta.
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Old 11-12-2019, 05:36 AM
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I've seen the commercials - I just wouldn't have thought a drug advertised on TV would negate the need of a transplant! That is good news!
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Old 11-12-2019, 06:18 AM
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The term "Great News' doesn't really do the situation justice.

How about "mega fantastic wonderful news"?

All the best!
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Peter
Old 11-12-2019, 07:36 AM
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I happened to see the announcement on the day it was FDA approved and immediately thought of you guys. Recently, I heard an NPR story citing the $$ charge associated with this therapy and as expected it was eye watering. While I understand that to be a secondary consideration, I really hope that someone somewhere gets a handle on that and soon.

All the same, it is terrific news!
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Old 11-12-2019, 01:15 PM
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All the best and continued prayers. It does sound like good news.

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Old 11-12-2019, 07:10 PM
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