Sean Phillips

Hello, it's me, Sean!

Caroline and I have brought back Team Phillips for a fourth year as we continue to raise awareness for the Cystic Fibrosis Foundation and those who fight and deal with CF daily. First, I will share my story because it's been a wild ride, but skip to the bottom if you're ready for details about how to get involved.

My CF Story. 

Well, I got married to the love of my life in 2017, and a few months later, I had my first episode of a major acute pancreatitis attack. During a pancreas attack, you’re not hungry. You lose your appetite. I spent a week in the hospital having my blood tested, given IV hydration, and didn't eat solid food for just about my whole time there. The doctors thought it was a one-time thing and sent me on my way.

I had my second major attack four months later. Since it was less of a mystery this time, I got out of the hospital much quicker. The problem this time, though, was that even after getting home, I now seemed to be getting more frequent pancreatitis attacks, sometimes monthly, sometimes multiple times a week. The pain came and went, and there was little I could do to stop it. I cut out alcohol and fatty foods. I exercised and took all the supplements Caroline could find, but nothing helped.

Fast forward a few months of testing, a gallbladder removal, and a series of genetic tests, and even my doctors were surprised to see that the results came back positive for Cystic Fibrosis. This was in December 2018.

Nothing about this made sense, so I spent most of 2019 trying to understand the information I had been given and how to manage this new part of my life. In 2020 I decided to get a second opinion, not because I didn't believe my diagnosis, but because doctors did (do) not seem to know what will help me most (did I mention I'm a unique case? I'm quite special!) After many tests in Rochester, NY, I flew to Rochester, MN, to visit Mayo Clinic one month before COVID-19 shut down everything. Mayo Clinic did all the same tests and came back verifying my diagnosis: Cystic Fibrosis.

Everyone agreed that my best shot would be to try a drug that works on traditional CF patients. Unfortunately, it appears as though my liver does not like this drug, so I was promptly taken off of it.

And that brings us to today when I'm still wrapping my head around this whirlwind of a story. Six years ago, I was a healthy adult with nothing notable wrong with him; I was just married and living a good life. This news hits you like a pile of bricks. It hasn't been easy to reconcile this news with the "healthy" dreams you may have for yourself or your family. And that process of self-education, understanding, and acceptance continues each day.

My story is pretty different than many people with CF. First off, most people with CF are diagnosed in early childhood, while I was diagnosed when I was 27. There are lots of interesting sciencey-medical reasons for this that you can ask me about if you're into that sort of thing, but the short answer is that I never had traditional CF symptoms growing up. 

Something different about my CF is that my lungs are quite healthy right now, which I'm incredibly thankful for. This sometimes makes it confusing, as the lungs are one of the main organs typically affected, but my specific CF genes have left me with strong, healthy lungs. I work with my doctors and have appointments several times a year to monitor them, as there is a chance that one day, my lungs will begin to have issues.

I'll reiterate that I recognize and am thankful that my health is better than many. That said, I’m still impacted by many of the lesser-known elements of CF, and my lungs have no guarantee they’ll stay free and clear. As "atypical" as my case is, I've come still to see myself as part of the CF community, and am ready to do my part to educate and advocate for those impacted. There have been many amazing breakthroughs for people with Cystic Fibrosis, but there is still much work to be done.

So enough about me... let's talk GREAT STRIDES! What is it? What am I asking? How Can you get involved? See below.

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Link to join my team: https://fightcf.cff.org/site/TR/?pg=team&fr_id=10576&team_id=135155

Link to walk: https://fightcf.cff.org/site/TR/GreatStrides/107_Rochester_Rochester?pg=entry&fr_id=10576 

Summary: The walk is in person this year, though you can, of course, join virtually if you're not in the region. The walk will be held on May 19th. Locally, we'll be walking at the Genesee Valley Park. To register, please see the link above. 

Please Note* There is no need to donate. If you choose to, that's very appreciated, but the overall drive behind this walk is to raise awareness. Funding the CF Foundation via a donation helps provide a means to a hopeful end. A day where we can see a cure. 

Thank you for taking the time to read this. I hope to see you on my 'team roster'.

Cheers,

Sean