Tuesday, June 11, 2013

Reflecting on the past 15 years of my life

Fifteen years ago yesterday I graduated from high school.  So much has changed in those years...

Random highlights:
January 1998 President Clinton's "I did not have sexual relations with that woman, Ms Lewinsky."
April 1998, Animal Kingdom at WDW opened for the first time
May 1998 Frank Sinatra dies
September 1998 Google is founded
November 1998 Elmo's World launches
(source secondary source)

CF Related Highlights since 1998:
1998 Specialized clinical research centers are designated as the Foundation’s Therapeutics Development Network.
2000 Foundation-supported scientists map the entire genetic structure of the most common cause of CF lung infections — the Pseudomonas aeruginosa bacterium. Researchers can identify the function of specific genes and find ways to turn off the bad ones.
2003 CFFT-supported scientists at Structural GenomiX, Inc., determine the three-dimensional structure of a portion of the CFTR protein, opening the door to more drug discovery opportunities.
2004 CFFT-supported studies in Australia and at the University of North Carolina show that hypertonic saline helps clear CF mucus. It is proven to improve lung function and reduce hospital stays, and becomes a therapeutic option.
2006 VX-770, an oral drug in development by Vertex Pharmaceuticals, Inc., with support from the Foundation, enters clinical trials. VX-770 is one of the first compounds to attack the root cause of CF, and works at the cellular level to open chloride channels that do not function correctly in people with the disease.
2007 Vertex selects a second potential drug known as VX-809 for development. Like VX-770, VX-809 addresses the root cause of CF, but it works by helping the defective CF protein move to its proper place in the cell.
2008 The Foundation and Vertex achieve a “proof of concept,” showing that it is possible to treat the root cause of CF. During Phase 2 studies of VX-770, trial participants, all of whom carry the G551D mutation of CF, show unprecedented improvements in key signs of the disease.
2010 The FDA approves a new inhaled antibiotic called Cayston® (aztreonam for inhalation solution) for the treatment of CF. Developed by Gilead Sciences, Inc., Cayston offers a much-needed antibiotic alternative for CF patients who battle recurrent lung infections and develop resistance to existing antibiotics.
2011 The Foundation announces that Phase 3 clinical trials of VX-770 showed profound results. Those receiving the drug demonstrated the highest increase on a lung function test seen in any clinical trial of a CF drug. Vertex submits a New Drug Application to the FDA for VX-770 under the trade name Kalydeco™.
2011  Results from the first part of an ongoing Phase 2 trial testing Kalydeco in combination with VX-809 show promising results in people with the most common CF mutation, Delta F508.
2012 The FDA approves Kalydeco™ for people with the G551D mutation of CF ages 6 and older. The drug is the first to address the underlying cause of CF and opens exciting new doors to research and development that may lead to a cure for all people living with the disease.
2012 Results from a Phase 2 trial of Kalydeco in combination with VX-809 show a significant improvement in lung function in people with two copies of the most common CF mutation, Delta F508.

For me:

I am not where I had expected I would be 15 years post-graduation.  I thought I would be an interior designer working at some high level company in Philadelphia, married with kids, living in a beautiful home in the suburbs.

I am not where I expected I would be, but I am where I WANT to be. My health may be shit, my ability to work may be gone for now, but I am married to the most amazing man I could ever dream of and I am the step-mother to two kids.  They may not be my own flesh and blood, but they I do everything in my power to make sure they will be contributing members of society, and good ones.

I may not have the biggest house, or hell, even live in Pennsylvania anymore, but I have a great life and I would not trade it for the world!!!

I never thought that 15 years later I would be living in Boston.  I never thought I would have married and honeymooned in WDW.  I never thought I would have my baby making parts removed to reduce the risk of cancer.  I never thought I would ever be referred to a double lung transplant clinic.  I never thought I would ever meet the man of my dreams online, THANKS to CF!  I never thought I would make so many wonderful friends because of this retched disease.  And I never thought I would ever stop working.  Then again, I did always think I would be dead at 26 or by 40...so...

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