Monday, December 7, 2009
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Someone who hopes to help newly diagnosed Alpha1's have a better understanding of how to help themselves...and others.
cabin
Favorite Poem:
I Do Not Choose To Be The Common Man
Ultimate Dream
Go back to being self employed and take vacations.
Motto:
Nothings Impossible
Current Doctors:
- Dr Pasic - UW Madison (Ear, Nose & Throat)
- Dr D. Kyle Hogarth - U of Chicago (pulmonologist)
Facts about Alpha1
- Severely effected alphas usually go on augmentation therapy($$$$$)
- There is no cure
- It most commonly affects the liver or the lungs
- It is hereditary
- It takes an average of 7 years and 5 doctors before it is accurately diagnosed
- It is commonly misdiagnosed as allergies or asthma
- It is most easily diagnosed in children as a result of liver issues
- 1 in 2700 is a ZZ or a Null/Null
- Approximately 6,000 out of 100,000 people in the USA have been diagnosed
- 1 in 33 people are carriers
About Me
- kschwabs
- Northern Wisconsin, United States
- Diagnosed 9 years ago with alpha1 and thought "Oh, it's just like diabetes...you just manage it." Six years ago shortly after turning forty I got what I call "That hit by a freight train letter!" It said I had lost a projected 12% of my lung function in two and three quarters of a year. I was now down to a projected lung function of 47%. It also said the augmentation therapy I wasn't supposed to have to start I would need to start. I spent a little over five months absorbing the shock of it and decided I didn't want to be a victim and it was up to me if I wanted to change the outcome of my future as a ZZ alpha1. Thus became the start of my lifestyle changing journey.
Current Maintenance Medications
- spiriva
- Zamaira
- Albueterol (Ventolin HFA)
- Advair 50/500
Lung Stats
- December 2014 FEV1 47% Oxy 96%
- October 2013 FEV1 32% Oxy 97%
- September 2013 FEV1 24% Oxy 93%
- October 2012 FEV1 39%
- September 2012 FEV1 25%
- September 2011 FEV1 47% Oxy ?
- April 2009- FEV1 51% Oxy 97%
- July 2008- FEV1 47% Oxy 97%
- June 2008- FEV1 41 %, Oxy 98 %
- January 2007- FEV1 44 %, Oxy 97 %
- November 2005- FEV1 47 %, Oxy 96 %
- March 2003- FEV1 59 %, Oxy ?
Events I Will Be Attending:
National Alpha1 conference June 2017
If You Think You'd Like One...Click below!
alpha1 links
helpful cancer links
links worth looking at:
adventure links
Books Waiting To Be Read On My Shelf:
- Driven To Distaction
- Unmarketing
- The Third Screen
- The Haymakers
- The Knack
- Linchpin
- The Dip
- The Power Of Eye Contact
- Grouped
- The 21the Irrefutable Laws Of Leadership
- Boundaries
- Poke The Box
- The Education Of Millionaires
- Be The Miracle
- Choosing To Be Great
- 50 50
- The 22 Immutable Laws Of Marketing
- Drive
- Six Pixels Of Seperation
- The Great Depression Ahead
- Where have all the leaders gone
- Reposition Yourself: Living Life Without Limits
- Covering Home: My Life With Nolan Ryan
- Stolen Season
Got something to say - sign my Guest Book
2009 events
- Dairyland Dare- August 15th,2009 Dodgeville,WI
2007 events
- Join The Journey (Rochester,MN) September 16, 2007 / 10 mile
- Hike For Healthy Lungs (Montrose Harbor/Chicago) September 23, 2007 / 3 mile
- RCU Charity Classic(Eau Claire,WI) June 30, 2007 / 2k walk 30:53
- Dairyland Dare(Dodgeville,WI) August 11, 2007 / 60 mile trek (scratched due to recovery from sugery)
- Scenic Shore 150(Mequon,WI) July21 & 22, 2007 / 150 mile trek (scratched due to cancer surgery)
- Rock 50/50(Janesville,WI) May19, 2007 / 38 mile trek 5.5 hrs
- Quadrupedal(Dodgeville, WI) May6, 2007 / 35 or 50 mile trek (scratched due to lung infection)
- Only Fools Run At Midnight(Minocqua,WI) April1,2007 / 5k walk 56:17
what I eat and exercise log
Hey You Weren't Supposed To Find This!!! Weight
- 02/09/2009 177.6 lbs
Events I attended/participated in 2008:
- Dairyland Dare August 16,2008 Dodgeville,WI
- Alpha1 Education day April 26, 2008 Oak Brook, IL
- Stepping Up To Wellness Walk April 27, 2008 Northbrook, IL
- Madison Paddle & Portage July 19, 2008 Madison, WI
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