Priceless Friendships

Last night was my monthly get-together with the Tampa CF wives. I can’t describe how much I truly love each of these ladies. I can’t believe that we met for the first time just a few months ago, it seems like we’ve known each other forever. Each of these girls has complete understanding about what it’s like to live with ever-present CF.

I feel so re-energized after our girls’ nights out. Our dinners together are pretty much the only time I talk much about CF related aspects of our lives. I’m still getting used to the fact that we can easily go from talking about recipes and haircuts to enzymes and mucus without even thinking about it. We laughed last night thinking about what people at the tables around us must be thinking about such conversations… only a CF wife can understand.

Feb wives dinner

Last night was extra special because an out-of-town CF couple that we’re are good friends with were in town. We were so excited that it would work out for her to join us for dinner. We first started following Jim and Denise about two years ago when Jim was preparing for his lung transplant. Then last year we had the pleasure of meeting Denise, but Jim was unable to travel at that time. So we’ve really been looking forward to getting to meet Jim this year.

Jesse and I sat down with the two of them for a while before dinner. They are an amazing couple! They have been through so much together, yet they both have such a positive outlook on life. Jim is the first post transplant CFer that we’ve met in person. We were beyond excited to hear from him what it’s like to breathe with someone else’s lungs. We were also excited that he so proudly showed off his scars/battle wounds. (Side note: Don’t freak out… we and Jesse’s doctors believe that he is very healthy and is nowhere near thinking about a lung transplant, so that’s not why we wanted to meet them. However, it is a reality for many CFers later in life.)

After meeting Denise last year, she thought that Jim and Jesse would get along perfectly. She was so right! It was funny how similar their personalities are. After Denise and I left them to meet up with the other wives, the two of them geeked out at the Apple store before heading to their pizza dinner. Denise and I were of the same opinion that we weren’t missing out on anything by not getting to the Apple store.

It meant a WHOLE lot to Jesse to be able to talk through CF stuff with someone who has been through it all. He had such a good time with Jim and he talked our entire ride home about everything learned from talking with him. It’s very scary to think that ten years from now we could possibly be where they are now. But then… hearing and seeing how happy Jim is now lessens the fear just a little.

We were extra paranoid about keeping a distance between the two of them. With Jim’s clean, new lungs Jesse did not want to be the one to infect them. Jesse made sure to bring a mask to wear when he was in the car with Jim and even held his breath when he stood close enough for a picture. Jim laughed at Denise and me being over-protective.

Such a good time was had by all. We’re already looking forward to seeing them when the come back to Florida again next year. Thanks for taking time out of your vacation to spend with all of us!

FDA Approves Kalydeco

The CF community is buzzing with excitement over the FDA approval of Kalydeco. This is a HUGE breakthrough toward finding a cure for cystic fibrosis! Although Kalydeco is not made to treat Jesse’s specific mutation, it means that a similar drug that is made for his mutation could be right around the corner. I found this video that I thought did a good job of explaining what having this CF mutation means and how this drug will fix it (you can stop watching when they start listing all the possible side effects).

To read more about Kalydeco, visit the Cystic Fibrosis Foundation.

Traveling with Cystic Fibrosis

Remembering everything you need to bring when traveling can be challenging for anyone. As you can imagine, it gets even more difficult when you have an arsenal of Cystic Fibrosis medications and equipment to bring along. For years Jesse chose to ignore CF and skip most (or all) treatments when traveling so we’re just now getting the hang of how to pack everything he needs. After a couple of successful trips this year, I thought I’d share some tips we’ve learned for our CF friends who are traveling for Christmas…

  • We try to pack all medications and related supplies in one suitcase. It just makes sense that this is the best way to make sure we have everything and it makes it easier to unpack when we get to our destination. When we travel by air we keep this as our carry-on bag so that there is no risk of it not arriving when we do. When we travel by car we want to make sure that none of the meds get left in the car if we don’t bring everything into the hotel room, and risk them overheating.

Meds bag

  • Also when traveling by air… we like to get a letter from clinic stating that all of the medications, supplies, and equipment are necessary for Jesse to travel with. The meds bag usually gets flagged and checked out pretty carefully (understandable) and we like to make sure we will get through with the needles and all the liquid vials. We also like to make sure we will be allowed to keep the Vest machine and CPAP machine with us as extra carry-ons since they are too expensive to replace if they were to get lost somehow.
  • Since the last two trips were road trips, I just brought the entire container of weekly vitamins. We were gone for more than two weeks both times and it was much easier to fill the pills container like usual instead of trying to count them all out ahead of time. And of course… it never hurts to bring extra Zenpep!

Vitamin container

  • We like to have a separate cooler, other than our food cooler, for the refrigerated meds so that it isn’t getting opened and closed all day. When get to our hotel I empty the meds into the fridge and refreeze the ice packs for the next day.

Cold meds

  • Lastly, Jesse has gotten used to finding a treatment chair to unload all of his stuff when we get where we’re going. The most important part is making sure the treatments actually get done. It’s hard when you’re busy being on vacation, but he feels so much better during the activities of the day when he has done them.

Treatment chair

That’s what works for us. Anyone else have some helpful tips to share?