March 2022 - See end of letter for info about where/when we are having walk-although we are now part of Baltimore site we will have separate event.
Hello! Good morning, afternoon, or evening, whatever it may be, I sincerely welcome you to CF Letter 2022! There is a bit of an elephant in the room for this letter, or rather, a Terrapin. I’m in college now! And with that comes a lot of new responsibilities, tactics, and strategies. So, if you don’t mind, this letter is formatted a bit differently than normal. Let’s explore a day as a college student with CF!
There aren’t many benefits to CF, but one is the lack of a roommate. Don’t get me wrong, I love my fellow Honors College class/floormates, but with my routine – a morning filled with pills, inhaled medicines, (which I breathe in the bathroom to avoid smoke alarms), and boxes and boxes of medical supplies – I’m glad I don’t have to bother someone else with it. For those who know about the 30+ pills per day and other medicines, you might be wondering how I made the transition to doing it all by myself. I am proud to say that I was already independent during C*VID times, and my mom’s gentle and patient reminders (I’m preempting her author’s note here) became less and less needed! I’ve put “therapy” and “pills” directly on my daily schedules – for some reason now I find joy in putting my treatments in lists like my mother. I suppose we all eventually become our parents.
We’re not here to wax about adulthood - let’s get back to the main topic! My doctors are big fans of my career choice – Vocal Performance! “What am I going to do with that,” you may be asking. Don’t worry about that part. What’s far more relevant are the hours of singing, aka lung exercise, I’ve been doing every day. My voice teacher has been wonderfully patient and understanding of Cystic Fibrosis, and her breathing exercises are loved by both me and my physical therapists!
I’ve been feeling the best I’ve felt in a long time.
A few days ago, I visited CF Clinic at Hopkins, and blew a 60% lung function! That’s the highest it’s been in over 7 years – since I first developed that nasty Non-Tuberculosis Mycobacterium infection. I’m incredibly thankful to be on campus. I've made many new friends – friends who joke about my Pediasure, my “Medical Milk,” and help me lug every box of medical supplies that’s dropped off at my building. I can’t help but think about the things that had to happen for me to get here. I’m not sure I’d be here if I still was on IV antibiotics – the stress of doing that by myself likely would’ve kept me at home. I also – knock on wood – haven’t had a major decline, even throughout midterms and finals, and because of that, haven’t been in Hotel Hopkins (admitted to the hospital) for nearly a year. I did have to spend a day at Hopkins over winter break to have a liver biopsy. The years of IVs, oral antibiotics, and most recently trikavta are causing my liver to have issues that we can’t seem to get in check. All we can do is continue to monitor with regular bloodwork and adjustments of meds. The “miracle drug” has improved my lung function but my liver isn’t liking it much!
I’m incredibly thankful for the medicines and treatments that allow me to be healthy enough to be on campus – medicines, and treatments that were developed by past donations from YOU! Medications like Trikafta, the “miracle drug”; and Imipenem-Vabobactrum, the brand-new combination I received when I was last on IVs. And while I may be feeling better, (relatively speaking, 60% is higher than 43%) there are plenty of people out there with CF who feel the same “blah,” who feel worse. The fight against CF is not over. I understand if it can feel exhausting sometimes, being asked every year. I know I can get tired of it, again and again, because often, medical research is so slow, and it takes so long to feel better, that it can be hard to envision the progress we’ve made. But we HAVE made progress. We’ve sent a kid who almost considered a lung transplant go to college! We’ve helped countless others with your support, whether those CFers are taking the Orakambi you helped pay for, or the Trikafta you helped pay for, they’re feeling better. Our fight is not over, we have more “-ambis” and “-aftas” to invent, but we’ve certainly won battles. So once again, consider donating to the CF Foundation if you can – you’ll help someone else’s lungs get to college too.
With much thanks,
Liam : )
Mom’s Addendum: Good thing I’m sitting down. Did he say he likes lists now?! And scheduling things? And does his treatments without “gentle and patient reminders” (aka my nagging!!)? My work as a mother is done. The end! LOL My work to lengthen and improve Liam’s live and all those still suffering and struggling with CF is not. There is still a long way to go to make CF stand for Cure Found. Thank you for all you have done and can continue to do to help! We REALLY appreciate it!!
(I think that was shortest Mom’s addendum ever! Or was it? I sure do miss having Liam around the house singing and endlessly babbling with his sister but I’m so thrilled to read his letter and know that he has been successful at college managing not just the transition to living away but living away with all the CF baggage! YOU made that possible with your donations and endless support! Thank you! )
In Memory: As you may or may not know my mom, Liam's Gaga died unexpectedly in January 2022. She loved the CF walk and was a HUGE fundraiser and supporter of the CF Foundation and of course her favorite grandson so we want to honor her and dedicate this walk to her. Please consider making an extra donation in memory of Gini Trotman - aka Gaga! It would mean so much to Liam and our family.
Walk Location: (You have two opportunities to walk with us, in Baltimore or at our home.)
Join us at our house Sunday May 22 at Noon. Bring your own picnic, lawn chair or blanket and we'll supply drinks, chips and dessert and of course our annual walk tradition: MD crabs!
Walk into Susquehanna State Park from our house around 12:30
Raffles galore! Bring your cash, checkbook, Paypal, Venmo etc.!
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To help minimize the risk of COVID-19, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should only attend outdoor CF Foundation events where they are able to distance and stay within their family group.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Please be advised certain localities and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you are feeling ill or have been recently exposed to COVID-19.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.