My family has been participating in the CF hike for years, so we have acquired quite a few Xtreme hike swag items. I frequently wear the down coat, my dad has a cooler, we got a pretty cool hat. Sometimes friends see the swag and ask about the hike and ask if we know someone with CF. That's when I tell them actually my husband has CF. They normally respond by saying "no way. David seems like such a normal healthy adult. I would have no clue." And that's when I normally go on my little schpeal about CF and how it's no longer a childhood disease and the advancements in treatment has increased the lifespan of those affected by CF to now make it an adulthood disease! David was lucky. He was able to receive Trikafta pretty early on back in 2020 and since then his lung function has plateaued which is what we LOVE to see. So what does a typical person with CF look like? It's different for each person with CF. There's some that don't need to take enzymes unless it's specific foods, there's some that need to take insulin, there's some that need frequent nebulizer treatments and chest percussion therapy. Okay you guys have probably heard about all the pills and hospital stays a person with CF might have to encounter... let's talk about what it is like being married to someone with CF. First of all, they are stubborn. Really really stubborn. And won't let anything slow them down. I'm a travel nurse, and David is able to work remotely. Not once in our 2.5 years of being on the road has David let his health slow us down. We move every 3-4 months. He is required to go to his CF specialized doctor every 3 months. Luckily his lung functions have plateaued which makes his doctor comfortable enough to agree to in person visits 2x a year(THANK YOU TRIKAFTA), the rest can be tele health visits. Prior to this past year, David had been having to fly cross country, stay the night in Chicago, take the train or uber out to the suburbs, wait around at the doctor and do a bunch of tests which typically takes 4-6 hours, leading to the doctor visit taking the entire day with commute time. The agreement to tele health visits has been life changing. This summer, I convinced David to move to Alaska. Planning for Alaska was a bit more stressful than other contracts. We were originally going to be in Sitka- only accessible by 10 hr ferry from Haines or couple hour plane ride from Anchorage. Delivery of packages takes months to arrive. If David were to run out of medications, it could mean he would have to fly home to St. Louis to collect them from our storage unit (my parents house). But if he were to get sick.... He would have to go to a 36 bed hospital and wait to be lifeflighted (helicopter) to a bigger hospital in Anchorage and then potentially be lifeflighted out of there to the lower 48. Scary. Then Juneau- okay a little bit less concerning, only a 5 hour ferry from Haines. Will take a month for something to arrive in the mailbox, still only accessible by ferry or boat, but it's closer to society than Sitka.

The months leading up to Alaska, David stowed away his enzymes and Trikafta like he was a squirrel getting ready for winter. Finally we got a contract in Anchorage, and it was like we could breathe again. Okay packages can arrive within a week or two, we are close enough to a big medical facility if god forbid he gets sick.

We started packing for Alaska and again David packed away his medications like a squirrel. He travels with 1-2 16x16 tubs of medication along with getting deliveries to our place we are staying. So on we went to Alaska less worried than before but of course there's always that lingering feeling of this is real and serious.

For an average healthy person, they would be able to fly out to wherever and be able to not think about it months leading up to the move. For David, we have to make sure he has enough medication stored up, close enough on grid for more medication to be shipped, and also be within a close distance to a large reputable hospital. This takes months to years of planning. For Alaska, this took 3 years of planning.

Most of the time, I forget David even has CF. The only thing that reminds me that David has CF is him having to take a handful of pills everytime he eats. These advancements in science has been life changing for David, but there's still more research and advancements to be made. There's still mutations of CF that have not found a modulator that works for gene variation. These modulators are life changing. One step closer to finding a cure. This is where you all come in...most progress made to finding a cure and finding treatments such as Trikafta has come through donations. Your donation goes straight to the foundation to fund research and find a cure. With your help more people with CF can live "normal" lives and more people can say "oh my gosh I had no clue .... has cystic fibrosis!"