HEMBY BRIDGE – Six years after being diagnosed with a genetic condition that would eventually require a double lung transplant, Hemby Bridge resident Sandra Cook is just a few steps away from her second wind.
Friends, family members and the community will rally around Cook this weekend to support her as she prepares to move to Durham to be near Duke University Hospital while she awaits the transplant. South 21 restaurant, 11450 E. Independence Blvd. in Matthews, will host the latest in a series of fundraiser car washes for Cook on Saturday, May 31, from 10 a.m. to 3 p.m. Funds raised will be given to the Children’s Organ Transplant Association, or COTA, in Cook’s name.
“We wanted to have a big hurrah to send Sandra off before she moves, but this is definitely not our last fundraiser,” Sharon Eichler, community coordinator for COTA, said. “All together, our COTA projects need to raise $125,000” to help with Cook’s medical expenses. Currently, a little more than $96,400 has been raised through various fundraisers over the past several years.
Cook was diagnosed with Alpha-1 Antitrypsin Deficiency, or “Alpha-1,” in 2008. Alpha-1 is a genetic condition in which the body doesn’t produce enough of a protein needed to protect the lungs and liver. Cook lost her brother in 2003 and father in 2005 – both died from Alpha-1-related liver complications.
Doctors originally thought Cook’s reoccurring lung issues were related to bronchitis, but tests showed the same genetic condition that claimed the lives of her dad and brother. The main problem for Cook, however, lies within her lungs.
Because Alpha-1 is a genetic condition patients are born with, Cook qualified for assistance from COTA despite being 53 years old. All of the funds raised through Cook’s previous and future fundraisers go to a COTA account in Cook’s name and will be used to help cover the costs of the transplant when the time comes. If something were to happen to Cook before she receives the transplant, COTA would take the funds raised and distribute them to another patient.
Cook’s doctors recently told her she had reached the window of opportunity for the double lung transplant she’s been anticipating for several years. She’ll relocate to Durham next weekend with her mom and rent an apartment near Duke until three to four months after the procedure.
Doctors aren’t sure when the transplant will occur, but Eichler and Cook said they’ve been told to expect six months to a year or more. Because Cook’s antibodies are elevated, the lungs Cook receives will have to match her antibody level, and finding a match won’t be easy.
“Out of 100 people, only six people could possibly donate their lungs to me,” Cook said. “…We don’t know when (the transplant) will be, so whenever God says it’s time to open the window, that’s when it will be.”
Cook will participate in pulmonary rehabilitation exercises five times a week during her time in Durham. She’s an avid scrap-booker, so her scrapbooking materials will accompany her for the duration of her stay. Her husband, Jeff, will have the opportunity to visit her once during the week and again each
Several of Cook’s friends and family members will attend caregiver education meetings, where they’ll learn more about how to effectively care for her before and after the transplant.
“I’m so blessed to have so many people supporting me,” Cook said.
Though Cook is experiencing a whirlwind of mixed emotions concerning the impending move and transplant, she’s choosing to focus on how she can use her experience to help others. That’s something she’s doing through spreading the word about Alpha-1, whether it’s by passing out information at her fundraisers or simply sharing her story with a stranger when the opportunity arises.
“My goal is to talk to people about Alpha-1,” Cook said. “… Alpha-1 is not a rare disease. it is rarely diagnosed.”
Learn more about Cook’s story at www.cotaforsandrac.com. Find more information about Alpha-1 at www.alpha-1foun dation.org.