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Gary H 1978 911 SC
Join Date: Oct 2003
Location: Fort Worth Texas
Posts: 1,306
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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 |
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11-11-2019, 08:01 PM
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Join Date: Mar 2004
Location: Los Angeles
Posts: 17,401
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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. |
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11-11-2019, 08:18 PM
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Bland
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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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06 Cayenne Turbo S and 11 Cayenne S 77 911S Wide Body GT2 WCMA race car 86 930 Slantnose - featured in Mar-Apr 2016 Classic Porsche Sold: 76 930, 90 C4 Targa, 87 944, 06 Cayenne Turbo, 73 911 ChumpCar endurance racer - featured in May-June & July-Aug 2016 Classic Porsche |
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11-11-2019, 08:29 PM
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Join Date: Apr 2001
Location: Linn County, Oregon
Posts: 48,533
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After watching the video, the drug sounds like wonderful news. Thanks for keeping us informed.
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"Now, to put a water-cooled engine in the rear and to have a radiator in the front, that's not very intelligent." -Ferry Porsche (PANO, Oct. '73) (I, Paul D. have loved this quote since 1973. It will remain as long as I post here.) |
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11-11-2019, 08:45 PM
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That’s great news; really seems like a miracle drug.
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Rutager West 1977 911S Targa Chocolate Brown |
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11-12-2019, 02:08 AM
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Join Date: Apr 2002
Posts: 30,493
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Thank you Gary.....best to you all!
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11-12-2019, 02:15 AM
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My friends call me, Top
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I hope it works great for Elissa !!
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Matt '87 924S |
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11-12-2019, 02:24 AM
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Join Date: May 2013
Location: Space Coast
Posts: 5,281
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I hope this works great for Elissa.
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Paul 82 911SC - 3 yrs of fun (traded-in) 06 MINI Cooper S - 19 yrs of fun (sold) 2011 Cayman (she purrs, loudly) |
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11-12-2019, 03:44 AM
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Back in the saddle again
Join Date: Oct 2001
Location: Central TX west of Houston
Posts: 56,098
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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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Steve '08 Boxster RS60 Spyder #0099/1960 - never named a car before, but this is Charlotte. '88 targa  SOLD 2004 - gone but not forgotten
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11-12-2019, 04:19 AM
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Join Date: Jan 2002
Location: VA
Posts: 3,573
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That is really great news. Please keep us posted on how she does with Trikafta.
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'06 Cayman S '16 Cayenne '08 Audi RS 4 |
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11-12-2019, 04:36 AM
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Join Date: Jul 2001
Location: Lawrenceville GA 30045
Posts: 7,379
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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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Mark '83 SC Targa - since 5/5/2001 '06 911 S Aerokit - from 5/2/2016 to 11/14/2018 '11 911 S w/PDK - from 7/2/2021 to ??? |
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11-12-2019, 05:18 AM
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Almost Banned Once
Join Date: Feb 2009
Location: Adelaide South Australia
Posts: 38,396
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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 |
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11-12-2019, 06:36 AM
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FUSHIGI
Join Date: Feb 2006
Location: somewhere between here and there
Posts: 10,750
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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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Cults require delusions. |
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11-12-2019, 12:15 PM
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Join Date: Aug 2007
Location: Kenbridge VA
Posts: 4,275
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All the best and continued prayers. It does sound like good news.
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Peppy 2011 BMW 335d 1988 Targa 3.4  2001 Jetta TDI dead 1982 Chevette Diesel SOLD
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11-12-2019, 06:10 PM
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Crop Duster
Kachow
1976 Porsche 930
1977 Porsche 911S Targa
Rudolf
Blue Max
Pearl
