Grace Knight
This past year I was constantly reminded of how lucky I am to live a healthy and full life with CF. As I have grown older and participated more in advocacy work, I have met many CF patients who are going through their second lung transplant, waiting on a kidney or liver transplant, have developed CF related diabetes, have become resistant to antibiotics, and lack treatment options, and who are battling CF-related cancer. These issues could just as easily be happening to me. I am healthy because I have been blessed by this community to have had people supporting me as I battle this disease. It is thanks to you that I am still here.
Over the past year I have learned a lot about what it means to be a patient advocate. Growing up I was surrounded by people like you who generously sacrificed for me to have a better life. As I start to experience and learn about long-term CF complications, it has become even more important for me to use
my own voice. While we have a much brighter future with the life-changing drug Trikafta, we have also entered a new chapter of the CF battle, and this one is still riddled with uphill climbs and steep terrain.
In November, I caught an infection that made me extremely sick. The antibiotic that usually works for my infections didn’t work and after two weeks of treatment I was still struggling to breathe. My doctor suggested I fly to Denver to be hospitalized for a tune-up but he wanted to try one more oral antibiotic before I booked a ticket. Luckily this one cut back the infection so I didn’t have to make the trip. However, I was sick for about six weeks and it took me even longer to fully recover. In January, I developed digestive symptoms which was both concerning and uncomfortable. CF patients are at an
increased risk for colon cancer so it is very important to stay on top of my digestive issues. My CF doctor switched me to a different enzyme. It seems to be working fairly well but only time will tell.
In the midst of all these challenges, I am thriving as an attorney and enjoying living close to my family. I traveled to Scotland for my friend’s wedding, although the virus I got in November made that one a close call. I shared my story at CF events in Tyler, Austin, and even nationally. Despite all my GI issues and the horrible virus, my last doctor’s appointment went well and I have been able to maintain my health. I have been blessed this past year with so many positive experiences even with the dark days that CF sends my way and I owe all those experiences to you, the people who have stood by me along the way. For that, I am immensely grateful.
As CF patients live longer, more complications arise, the patients who can’t take Trikafta get sicker, and it gets harder to climb the many mountains CF puts in our way. I hope that you will continue to join in my fight against this disease by lacing up your shoes at the CF Walk on Saturday May 3rd at 10:00am at the Caldwell Zoo. Please wear orange (To the A&M supporters: any shade works, it does not have to be burnt) to show support for Team Saving Grace!
I know with your help we can make CF stand for Cure Found. See you at the walk!
Over the past year I have learned a lot about what it means to be a patient advocate. Growing up I was surrounded by people like you who generously sacrificed for me to have a better life. As I start to experience and learn about long-term CF complications, it has become even more important for me to use
my own voice. While we have a much brighter future with the life-changing drug Trikafta, we have also entered a new chapter of the CF battle, and this one is still riddled with uphill climbs and steep terrain.
In November, I caught an infection that made me extremely sick. The antibiotic that usually works for my infections didn’t work and after two weeks of treatment I was still struggling to breathe. My doctor suggested I fly to Denver to be hospitalized for a tune-up but he wanted to try one more oral antibiotic before I booked a ticket. Luckily this one cut back the infection so I didn’t have to make the trip. However, I was sick for about six weeks and it took me even longer to fully recover. In January, I developed digestive symptoms which was both concerning and uncomfortable. CF patients are at an
increased risk for colon cancer so it is very important to stay on top of my digestive issues. My CF doctor switched me to a different enzyme. It seems to be working fairly well but only time will tell.
In the midst of all these challenges, I am thriving as an attorney and enjoying living close to my family. I traveled to Scotland for my friend’s wedding, although the virus I got in November made that one a close call. I shared my story at CF events in Tyler, Austin, and even nationally. Despite all my GI issues and the horrible virus, my last doctor’s appointment went well and I have been able to maintain my health. I have been blessed this past year with so many positive experiences even with the dark days that CF sends my way and I owe all those experiences to you, the people who have stood by me along the way. For that, I am immensely grateful.
As CF patients live longer, more complications arise, the patients who can’t take Trikafta get sicker, and it gets harder to climb the many mountains CF puts in our way. I hope that you will continue to join in my fight against this disease by lacing up your shoes at the CF Walk on Saturday May 3rd at 10:00am at the Caldwell Zoo. Please wear orange (To the A&M supporters: any shade works, it does not have to be burnt) to show support for Team Saving Grace!
I know with your help we can make CF stand for Cure Found. See you at the walk!
APR
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Our team last year at the CF Walk!
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