Cindy (Chicago)

Birth Date
6/30/56

Gender
Female

Heritage
Mayflower/Irish
American Indian

Nationality
American

Alpha type
lung

Alpha gene
SZ

Alpha Level
61

Diagnosed
3/1/2001

Last FEV1
18%

Treatment
Weekly Zemaria Infusions
multiple inhalers

Siblings
3

Children
4

Grandchildren
1

Cindy

Alpha Angel as of January 2010

Chicago, IL

Her favorite colors were ALL BRIGHT COLORS

Her favorite writer was Jonathan Livingston Seagull.

Her favorite music was Jazz and Easy Listening.

She had a Yorkie mix called Peaches.

She enjoyed enjoy arts, crafts, writing and fixing stuff.

Her favorite quote was "Faith is the substance of things hoped for, the evidence of things not seen."

9/20/2007 I saw the lung transplant team at University of Chicago last month and began being evaluated for a double lung transplant. I have two tests remaining and will probably get a final decision on whether or not I will be accepted and listed mid-October. I have a Carepage set and I am documenting the process using that system. My Carepage is: TheTransplantJourneyOfCindyWilson. I'll update at the CarePage after I get their decision.

2/16/2006 In March, 2001 I was diagnosed with advanced stage emphysema after a hospitalization which resulted from an asthma attack. Because of my age at the time, the doctor had me tested for A1AT. I had never heard of it. Come to find out, I had Alpha-1 Antitrypsin Deficiency. I immediately began reading and learning everything I could.

My breathing problems began in 1991 when I inhaled gas from chlorine stablizer tablets -- used inhalers since. I had a really hard time finding funding to begin replacement therapy and almost died in February 2005. I went to hospital via ambulance for difficulty breathing and woke up three weeks later on life support. Since then I've come a long way.

I go to pulmonary rehab 2 times a week and keep in close contact with the lung transplant team here in Chicago. I am very knowledgeable about my disease and have become equally knowledgeable about the meds I take. The greatest of all is the oxygen I have now. It has made an unbelievable difference in my ability to breath and live everyday life. I am so thankful for the doctor who would not let me leave the hospital until the oxygen was set up there and waiting for me.

I am researching the web now to find out and possibly meet others I can share and learn from. Feel free to contact me. I am working on trying to get a support group created here locally. One of my daughters was recently tested for A1AT and is awaiting phenotyping and levels.

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