The annual Great Strides walk for Cystic Fibrosis was held this past Saturday on Sullivan's Island. There was a good turnout at the walk. I saw lots of my patients, several coworkers and a few friends came out to support a cause that is so near and dear to me!
Earlier this year, I sent an email out asking people to join me for the walk and for donations. I am pleased to say that I met and passed my personal goal!
My email went a little like this:
"Most of you know that I spend my days (and some nights!) devoted to making the lives of lots of little kids with cystic fibrosis just a little easier. For the past 5 years, I have worked at MUSC in the Cystic Fibrosis clinic. For the past 3 years, as the pediatric CF Nurse Coordinator, I have devoted 100 % of my time to caring for CF patients. Cystic Fibrosis is tough....I wouldn't wish this disease on anyone...but I feel extremely blessed to be able to care for each of my patients and families. Please read on to learn a little more about CF. Most importantly, please know that while I am hoping you will consider supporting me, I understand that you may have other causes that you already support financially (like Water Missions International....with the Walk for Water on March 24th....just a quick plug for another awesome cause!) and I completely understand. If you can't support the CF Foundation with monetary donations, will you at least consider walking with us on May 12th. The walk is on the beach and the past few years have been beautiful! There is no registration fee for the walk. If nothing else, just remember all of my little patients, their health care providers and the researchers in your prayers each day.
A day in the life of a typical Cystic Fibrosis patient includes twice daily airway clearance, they are asked to take multiple inhaled medications and then use a machine that vibrates and helps bring up mucous. This adds about 1 hour to their morning routine. Can you even imagine doing this with your fussy toddler or defiant teenageer? We ask them to do it again at night. Some of my families have to get up at 5:30 in the morning just to make sure they have enough time to get these treatments in before getting to school. In addition, most of my patients have to take medicine everytime they eat. This quickly adds to their pill count. I would guess that most of my patients take 20 - 30 oral pills every single day. My patients may have g-tube for help with nutrition or central lines for frequent IV antibiotic treatments. The best part is that most of my patients have adapted to this routine and they understand they have to do this to take care of their body.
This year, I had the privledge of watching a small number of my patients start therapy with a new drug - Kalydeco - it is expected to drasitically change their lives...possibly even stop the changes that CF causes to their body. I was the lucky one to call these patients and share this good news with them. Tears of joy from so many parents made my job extremely special on that day!! This new drug was made possible by donations to the CF Foundation. Other drugs are on their way - and I can't wait to be able to call my patients to let them know when it is their turn to try such amazing therapies. Please help me make "CF" stand for "Cure Found!" "
A day in the life of a typical Cystic Fibrosis patient includes twice daily airway clearance, they are asked to take multiple inhaled medications and then use a machine that vibrates and helps bring up mucous. This adds about 1 hour to their morning routine. Can you even imagine doing this with your fussy toddler or defiant teenageer? We ask them to do it again at night. Some of my families have to get up at 5:30 in the morning just to make sure they have enough time to get these treatments in before getting to school. In addition, most of my patients have to take medicine everytime they eat. This quickly adds to their pill count. I would guess that most of my patients take 20 - 30 oral pills every single day. My patients may have g-tube for help with nutrition or central lines for frequent IV antibiotic treatments. The best part is that most of my patients have adapted to this routine and they understand they have to do this to take care of their body.
This year, I had the privledge of watching a small number of my patients start therapy with a new drug - Kalydeco - it is expected to drasitically change their lives...possibly even stop the changes that CF causes to their body. I was the lucky one to call these patients and share this good news with them. Tears of joy from so many parents made my job extremely special on that day!! This new drug was made possible by donations to the CF Foundation. Other drugs are on their way - and I can't wait to be able to call my patients to let them know when it is their turn to try such amazing therapies. Please help me make "CF" stand for "Cure Found!" "
Our team dietician, Kory and myself before the walk
Several of my coworkers
Nina (nurse practioner), Cheryl (nurse practioner), myself, Mary (respiratory therapist), Kory (dietician)
A few of our friends
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| Chad and Jeff |
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| Brook, Jess, Stacey |
We had a great walk with all the kids and enjoyed lunch and ice cream after the walk! It was a perfect day on the beach.
Following the walk, I made some great strides at home...great strides in cleaning out my cabinets. I'm embarrassed to admit that my "tupperware" cabinet was looking like this:
I mean, really, it was just a game to see what you could grab before everything fell onto the floor. While Owen napped, Chad took Payton for a special outing....his 1st trip to play golf with his big boy clubs (on the driving range). By the time they had returned I had cleaned out, thrown away, and rearranged...in total, I tacked 6 cabinets, 1 drawer and a small part of my china cabinet in the dining room. The sad part is that I forgot to take a picture once I was finished. Trust me, the great strides make for an extreme cabinet makeover! I'm hoping to tackle several other areas in our house in the near future!
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