Our Team Walk Is
May 17th, 2008!!

Cystic Fibrosis Foundation
 

Lung Transplant
Support and Assistance Group
 

Whiskerville
Animal Sanctuary

 

Greater Houston Meals On Wheels

Be An Organ Donor
You Can Donate Life
www.OrganDonor.gov

My husband, Chris, was diagnosed with Cystic Fibrosis (CF) at age 3. At that time, his parents were told that he would only live to be age 18, and currently, at age 35, he is still going strong. Numerous medical advances are what made this possible. I am very proud of my husband as he is one of very few with Cystic Fibrosis that was able to maintain their health to attend a university, receive a bachelors degree, and have a challenging 5-year career as an Engineer with Lockheed Martin. Chris was forced to go on long- term disability (which he called early retirement) because he was unable to work fulltime due to his increasing health needs. Fortunately, for us, since he was employed with such a great company he is blessed with ongoing excellent health insurance. In September 2005, Chris became very ill and was blessed with to be a recipient of a set of donor lungs. His health and energy now is absolutely incredible and he returned to work fulltime in December 2006.

The average life expectancy of a person born with Cystic Fibrosis has increased from grade school age in the 1950's to age 18 in 1972, and to ages today in the 30's and 40's. A large percentage of the CF adult population are unable to work full-time due to the increasing health needs seen in the late stages of their disease. Not all, but a large percentage of this older CF disability group typically rely on Medicaid, SSI (social security insurance, a very small monthly $ amount), and other government assisted programs. We do know many CF adults who currently have, like my Chris, wonderful challenging careers.

To learn more about Cystic Fibrosis, use this link: http://www.cff.org/AboutCF/

We have seen many young children and great friends lose their battle with this disease. Individuals and families can incur numerous expenses due to frequent hospitalizations, special medication needs, loss of wages, and so on.  We have seen many struggle to try and make ends meet.

Because my husband and I are fortunate to have everything we have, we like to try to help other cystic fibrosis individuals and their families whenever possible. Therefore, due to my ongoing obsession with shopping for vintage clothes, I decided to create this website and share my forever growing vintage collection with others. In addition, a portion of all sales through this website will go toward Cystic Fibrosis, Lung Transplant Support, Humane Animal Causes, Food Banks, and Homelessness charitable needs.

Furthermore, I feel strongly about encouraging other CF’s in attending a college or university to obtain a degree. This way they could have the ability to have some of the same opportunities and benefits as my husband and I do. It is a lot of hard work for a CF, but this accomplishment gives you confidence and independence.

(Dec. 2007) This is our story....
On September 18, 2005, my husband became very ill, very fast. Pneumonia had spread like wildfire in his lungs, thus, he was put in a drug induced coma and on life support. Houston, TX has a wonderful accredited advanced medical community, but the St. Louis, MO center has had extensive experience in all sorts of situations with extremely sick lung transplant candidates (In 1998 he chose to be evaluated for lung transplant in St Louis). There was absolutely no time whatsoever for hesitation, no time for doubts, we needed to act fast, and I knew what my husband would choose to do if he was conscious to make his own medical decisions.  He was flown via air ambulance from Houston, TX to St. Louis, MO for further evaluation at the Barnes Jewish Lung Transplant Center. Just 4-days after arriving in St. Louis, Sept. 25th, Chris received the best gift anyone could ever wish for, a compatible set of new donor lungs. Words cannot express how thankful we all are to the family of a '30 year old male in Chicago', that made the decision to donate his organs. This young man, who lost his life too soon, is continuing to live on through my husband and others as well.

A smart thing many CF adults do is to get evaluated for a lung transplant anticipating the possible scenario of getting very sick, very fast. There are multiple centers across the US to chose from. Since there is still not a cure for CF, the only last resort to survive is to have a double lung transplant. Chris had a long and difficult recovery, but he is doing great 2+ years out with no infection or rejection. He went back to work fulltime in Dec 2006 and loves his job.

Survival rates for lung transplants today are 73% 1-year out and drastically drops to 23% at 5-years out. Since the lungs are in contact with the environment every day, the survival rates are much shorter compared to heart, liver, etc... If you know of any big wigs at either drug company, Chiron or Novartis, please let them know we are anxious for a further aggressive drug study (inhaled cyclosporine formula) that could possibly double or triple the survival rate. The following link summarizes it all very well:

http://wiki.jimgilliam.com/Health/Pulminiq

Ever thought about being an organ donor? You can give life! Thousands die each year waiting for a donor organ. Just discuss your wants with your family. Better yet, put them in writing through a living will or power of attorney. Signing the back of your driver's license is not enough, make sure your family and next of kin (spouse) will follow through with your wishes. Your immediate next of kin will be the one who will ultimately make that decision for you if you are unable to.

For more information on Cystic Fibrosis, you can go to the Cystic Fibrosis Foundation website at www.cff.org

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