Juggling Responsibilities and Compliance – Guest blog by LMK Scholarship Winner

By: Mike Miccioli

I went to high school in Nashville, Tennessee and am currently a freshman at Harvard. Growing up in Nashville, I always focused on academics and staying healthy. On the academic side, I have always had an interest in mathematics, and physics is a fascinating way to apply math to science and the universe. I took all the toughest courses in math and science, and I competed in every math competition and Science Olympiad contest available. I did applied mathematics research at Vanderbilt University the summer after my junior year of high school, and different research during my senior year in condensed matter physics. On top of this hefty workload, my school required all its students to play sports after school year-round. With all of these obligations and many hours of homework each night after sports, working in my CF therapies was not easy; however, from an early age I learned the lesson that I had to prioritize my CF therapies that were necessary to keep me healthy and enable me to pursue my academics and sports. I had to be disciplined, and I got up early each day before school to make sure I did all my vests and nebulizers in the morning. There was a second round each evening, and I would always try to combine homework with both the morning and evening sessions. If a special circumstance would throw my schedule off and interfere with my therapies, I always made them up at different times during the same day; it was a given that I couldn’t miss therapies.

Compliance with the therapies that are available to us nowadays is crucial to having a good outcome with CF. There is generally a vast difference between the outcomes of patients who do their best to comply with their therapies every day and those who have a hard time completing theirs on a regular basis. I have always stayed aware of this fact and used it to motivate me to be compliant, and I believe it has paid off.

This fall I made the transition to my first semester in college, 1200 miles away from home and my support network. The first adjustment was being responsible for remembering to do everything without prompting from my parents. That wasn’t too difficult, and a bigger challenge was learning how to be more flexible in how I achieved my full compliance despite the fact that my schedule was different every day. Reflecting back on my years prior to college, my schedule was the same nearly every day, and this helped me stay disciplined in keeping up with my therapies. In college, I have had to look at each day and determine when I am going to fit in my routine as I meet all my academic obligations. Having completed my first semester, while it was frustrating at first, I eventually fell into a rhythm — from having nighttime labs one day to having an overloaded afternoon the next, eventually I encountered all the different scenarios I would be faced with, and it became easier to deal with each day’s changes.

I am continuing my studies of math and physics at Harvard and am currently in the process of applying for research opportunities for this summer. At this point, I am thinking that I want to pursue a career in scientific research. I guess one of the main reasons I feel this way is because I have personally benefited from modern advancements in medicine. I currently take one of the CFTR modulator drugs and have had good results with it, and it reminds me every day of how people can benefit from cutting edge research and have their lives changed in meaningful ways. I hope to be able to contribute back to the scientific community and perhaps some day make a difference for others.

This also relates back to the point I was making before about working hard to be as compliant as possible with your CF therapies. CF research has made amazing strides, and it appears that significantly improved CFTR modulators will be available to as many as 90% of those of us with CF sometime in 2019. The healthier we are when these new therapies become available, the better positioned we will be to take advantage of their benefits to the maximum degree possible. That is the other big reason to try and stay compliant. So, in conclusion, I want to encourage everyone to remember that while it is difficult to make compliance a priority day after day, without a break, particularly when you are in college with new vistas to explore and great demands for your time, it is worth it, and you will reap the benefits in the short run and even more so down the road when new therapies become available.

Tips For Never Missing Your Meds

In this Cystic Fibrosis Wind Sprint, Jerry Cahill talks about the importance of never missing your medication, especially post-transplant. To help him keep track of his meds, Jerry keeps color coordinated pill cases in his car with extra doses of medications in case he ever forgets to take them. He also keeps extra dosages in his backpack, which he carries with him everywhere, for the same reason.

The video wind sprint was made possible through an unrestricted education grant from Genentech to the Boomer Esiason Foundation.

USACFA’s Fall 2017 Lauren Melissa Kelly Scholarship Winners

The US Adult CF Association (USACFA) is excited to announce our recipients of the Lauren Melissa Kelly Scholarship: Congratulations to Jacob Greene and Elizabeth Shea! They will be awarded $2500 each. Continue reading USACFA’s Fall 2017 Lauren Melissa Kelly Scholarship Winners

Cystic Fibrosis Wind Sprint 58: Extended Hospital Stays and Leg Workouts

Jerry reviews the various leg stretches and workouts he uses during an extended hospital stay. By working out regularly and keeping his legs nimble and strong, he knows that, as soon as he leaves the hospital, he can get back on his bike and back to training for his next adventure. Always remember – Continue reading Cystic Fibrosis Wind Sprint 58: Extended Hospital Stays and Leg Workouts

CF Podcast 170: Jerry’s Five Year Transplant Anniversary

Jerry Cahill, 5 years post transplant, shares the ups and downs of his journey as an organ donor recipient.
https://www.youtube.com/watch?v=AcanwNW5A4k&t=8s

This podcast was made possible through an unrestricted educational grant from GENENTECH to the Boomer Esiason Foundation.

You are invited to attend a free web-cast event SATURDAY, APRIL 22, 2017

RARE LUNG DISEASES PATIENT EDUCATION DAY ON CYSTIC FIBROSIS, CHILDREN’S INTERSTITIAL LUNG DISEASE AND PRIMARY CILIARY DYSKINESIA

REGISTER NOW AT:
https://attendee.gotowebinar.com/register/6993341835513746691

This event is co-sponsored by the American Thoracic Society, the Cystic Fibrosis Foundation, the Children’s Interstitial Lung Disease Foundation and the Primary Continue reading You are invited to attend a free web-cast event SATURDAY, APRIL 22, 2017

Cystic Fibrosis Step by Step: Building a Treatment Routine

In this video, Gunnar stresses the importance of building a routine in order to stay compliant with his treatments and remain healthy. He also reminds listeners to keep an open dialogue with their doctors and support teams at CF Clinics. Continue reading Cystic Fibrosis Step by Step: Building a Treatment Routine

Making it Matter Ep. 30 – Living with a Roommate

When people with cystic fibrosis head off to college the big decision is whether or not to live with a roommate. If we choose to live with roommates, for many of us it will be the first time we are very much sharing our cystic fibrosis with someone else. The need to perform Continue reading Making it Matter Ep. 30 – Living with a Roommate

NEW Cystic Fibrosis Step-by-Step Video Series Launches Today!

Cystic Fibrosis Step-by-Step: What is Cystic Fibrosis?

The Cystic Fibrosis Step-by-Step video podcast series was created by the Boomer Esiason Foundation to help CF patients and families develop routines and guidelines to help them succeed and to answer basic questions that arise regularly.
https://www.youtube.com/watch?v=__m7G9KEsL8&feature=youtu.be
Continue reading NEW Cystic Fibrosis Step-by-Step Video Series Launches Today!

OWN IT: Do People With Cystic Fibrosis Experience FOMO?

Full disclosure here; I’m writing this while doing my treatments. In fact, I just stuck a syringe into a vial of sterile water, drew some out and then injected it into vial containing powdered medicine. Continue reading OWN IT: Do People With Cystic Fibrosis Experience FOMO?