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

wilson_cindy@sbcglobal.net

I live in Chicago, IL

I am unemployed due to disability.

My favorite colors are ALL BRIGHT COLORS

My favorite writer is Jonathan Livingston Seagull.

My favorite music is Jazz and Easy Listening.

I have a Yorkie mix called Peaches.

I enjoy arts, crafts, writing and fixing stuff.

My favorite quote is "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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