This past October I celebrated two years with my new lungs. I still can't believe it. It's still so surreal. Every single day I find myself stopping to think about my breath, amazed at how deep and easy it is. When I'm having an off day from a cold or allergies, I panic at the thought of losing that easiness.
The past two years have been incredible and I wouldn't change them for the world, but while I am eternally grateful for my donor and his or her family, I am also constantly reminded that lung transplant is not a cure for cystic fibrosis.
Almost immediately following the elation of being able to breathe every day comes the inevitable paranoia that it is all about to come crashing down at any moment. Is this slight cough the beginning of the end? This pain in my back.. did I pull a muscle or are my kidneys failing? I feel a little foggy today. Is it a drug side effect or am I severely dehydrated?
In the past six month alone, I have faced a serious cancer scare, stayed in the ICU with a mysterious recurring bout of neck swelling getting in the way of my airway, had my second sinus surgery in two years, and put thousands of miles on the cars driving back and forth to Duke.
And these are minor issues compared to what other transplantees are going through. I've watched friends battle kidney failure, rejection, cancer, and sadly, I have seen way too many people with CF pass away this year, both pre and post transplant.
The point of all of this is not to complain. Like I said, I would not change these past two years for anything. Anything. My point is that just because I can breathe right now..today..does not mean I can bail on the fight for a cure for CF. I'm lucky enough to be doing very well since transplant, but the fact is that way too many people with CF either never get the chance to have a transplant or don't get far enough post transplant to truly embrace their new life with borrowed lungs.
So in honor of those CFers, I'm here once again asking for your help. Great Strides is the CF Foundation's biggest fundraiser of the year and every year team 'Are We There Yet?' steps up in a big way to help make it a success.
In fact, this year we've expanded and thanks to a few very special people we have officially gone NATIONAL!!! 'Are We There Yet?' is now in New Jersey, Georgia, California, Florida and Indiana!
Walk dates are different in each state, but us NJ folk will be walking at Van Saun Park in Paramus on Sunday, May 19th. I hope you can join us but if not, I'd love if you'd support us by being a "virtual walker." As always, we can use all the help we can get.
Thank you all for your past and future support!
P.S. Be on the look out for info on the third annual team BBQ!!!
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.