“My cough wouldn’t go away. They found a dark place on my lungs that turned out to be the problem,” said Robin.
For most people with Sarcoidosis, living day to day is manageable and 95 percent of those with the disease will go into remission, but for Robin, damage to her lungs worsened.
“I was diagnosed in 1993 and for a long time I was able to stay active but in the last three years it’s gotten progressively worse,” she said.
“I became more and more short of breath. My lung doctor sent me to Emory to see about getting a lung transplant. At first they told me to lose 15 to 20 pounds and come back. I did. They did more testing then told me to lose 40 pounds and I did. Now after more tests they have told me I need to lose more to be healthy enough to be on the lung transplant list,” she explained.
Robin is 50 years “young” this year. She has stage four lung disease and only 19 percent of one of her lungs still functions. It took two oxygen tanks for her to get through this interview.
For Robin to get on the list she has to not only be healthy but raise a lot of money.
“At first the amount I was told I needed to raise was $130,000 for anti-rejection medication before the doctors could proceed with treatment,” she said. “Recently I was told that if I could just raise $10,000 I could get on the list and I began to hope a little.”
Robin had to take disability when her lung disease made it impossible for her to work. At present, with only 19 percent of one lung functioning, she can walk to the restroom, bedroom or kitchen with long rests in between and that’s on a good day.
“I have three grandchildren that I am raising. They’re 11, 13 and 17 years old, two boys and a girl - the joy of my life,” said Robin. “They’ve been taking care of me when I wish I could be taking care of them. I love them so. I am ineligible for insurance coverage or medicare and because of disability I don’t qualify for Medicaid.”
Robin isn’t letting this financial hurdle take her breath away. Good friends have helped her put together the website www.gofundme.com/Saving-Robin, a yard sale and have planned the Robin Jackson Brown benefit for Oct. 6 at Oostanula Community Center to raise funds. Wells Fargo Bank of Calhoun has a Robin B. Jackson Donation fund for those who want to help financially as well.
Robin’s dear friend Stacy Ferro posted this of Robin two weeks ago:
“An update on Robin. She is home from the hospital; she was feeling somewhat good yesterday, so let’s keep praying that she will continue her days of feeling good. She has a big goal to reach and if we all pull together and get her story out many people can help her. Robin is a remarkable lady, so inspirational and so full of life. If we could make one wish that would be for Robin to get the transplant she so needs and deserves so she can start enjoying her life again. ‘Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.’- Proverbs 3:5-6”
Robin said she feels so blessed by her friends and family. She grew up in Gordon County and is a proud 1980 graduate of Red Bud High School.
“I am so thankful for everybody that has helped me so far. So many have prayed for me, helped me be strong and kept my spirits up,” Robin said. “Thank you to every one who is pulling for me when I’m tired and discouraged.”
When asked what she wants to do with her life after a successful double lung transplant, Robin doesn’t waste a precious breath saying, “Everything! I’d like to do a whole range of things from big to little like working in the public - I loved working with people before my illness. I don’t want to waste another minute of my life laying around. I want to get out and do things, live!”
“Also, it’d be really nice to take a shower,” she laughed.
~Source: National Heart, Lung and Blood Institute