MCM: Vinny

[Jenny Livingston]

We’re back with Vinny as our MCM! @vincenz99 is 30 years old and from NY. Here are a few things that’re important to his story with CF.

🔥 I was diagnosed with CF at 6 months old, soon after the discovery of the CF gene. Luckily, my family didn’t let this grim diagnosis & unknown future keep me from living the life of a normal kid. I was always active; played sports; and loved all night video game sessions. I was lucky enough to be a relatively, healthy, normal kid for the majority of my childhood and teenage years. I had aspirations of becoming an artist or an actor, a teacher, then an obstetrician. You can imagine the looks on the faces of my family and friends when I became an accountant (I hated math class growing up!).

🔥 As a young adult, there were times when I found myself battling mild depression. The Internet can expose the grim realities of this disease and create a firestorm of “what if” scenarios. I wanted to live a full life; I wanted to have a family; I wanted to see this disease cured. Thankfully with the support of my parents, family, and friends, I have learned to not sweat the small stuff and to live each day to the fullest. Mental health and CF go hand in hand: never underestimate the power of a positive outlook.

🔥 Starting Trikafta was easily one of the best days of my life, so far. This drug is nothing short of a miracle. My weight and functions have skyrocketed; my outlook on life has improved; and for once, I never cough. Thanks to Trikafta, I am slowly getting back into my gym regime and hope to run a 5k marathon in the near future. I am also back into hobbies that I haven’t been able to do in quite some time — kickboxing, hockey, cycling, and lifting. I can also sing (badly) in the car now without hacking up a lung in the process. With my new lease on life, I want to continue raising awareness for CF and the wonders of this drug. I want every patient who can benefit from this drug to get it ASAP! In non-CF news, I love binging movies & television on my free time; I am an avid NHL fan; I speak multiple languages; I love going to the gym; and I love to reminisce about 90s Nickelodeon.

Question: CF doesn’t define us. What is a hobby you enjoy that helps you live with CF? 

[Christina Kolassa]

I love your story! It mirrors my kids’ lives. We have 2 kids with CR, Will, 17 and Sarah, 12. They were also diagnosed early, (actually at birth because of Maconium Illius for both). We have always expected good things to happen despite dealing with a CF diagnosis. I truly believe that the mental state of both the care giver and affected person is vital when it comes to daily life and happiness! Like you, we have seen the same types of results on Trikaftka. I call it a medical miracle. I tell everyone about it, strangers as well as friends, Their response is always the same…amazement. Especially with the people who personally know us. When I run into a friend I haven’t seen on a while I know they’re hesitant to ask how things are going, but are pleasantly surprised to hear the news. In a few weeks my kids and I have been asked by a clinical trials company (completely unrelated to CF trails) to speak at their sales meeting. By chance I met the head of sales of the company on a plane. We talked the entire flight about the experience we had being in the Trikafta trial. He was so moved by our experience he asked me to come and talk to his sales people. He wanted us to tell about the experience, mainly because he wants to motivate his sales people to continue to do the great work they’re doing in the clinical trials world. It’s amazing what happens when you open up talk about your experiences!!

[Jenny Livingston]

@ckolassa you remind me of my own mother. She’s told so many people, friends and strangers alike, about Trikafta. She’s been a CF parent for over 40 years, and this is the first time she’s experienced this level of utter amazement at a drug/treatment.

I love reading about your speaking opportunity. Sharing our stories can be so incredibly powerful!

[Tim Blowfield]

Fantastic Vinny to read your story. Trikafta has been fantastic for most who have started on it with remarkable improvements in lung function. Few have commented upon improvements in bowel and pancreatic (diabetes) function. Have any men found improvement in sperm production.

I am interested to see whether PWCF may experience other improvements the result of improved Chloride transport, Cardiac function, hyperparathyroidism and bone health (osteoperosis/paenia), Adrenal function and hypokalaemia. These may all result from abnormal intracellular electrolytes and largely go un-noticed, subsumed by the overwhelming lung disease. BUT we do need to document all these to gain the best for PWCF and understand Cf  better.

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