Surprise Clinic

April 16, 2011 in Filed Under: Cystic Fibrosis, Jesse, Marriage 3 Comments

Jesse hasn’t been feeling completely himself the last couple of weeks.  Between the constant sinus headaches and all the busyness in our lives he was feeling just a little run down.  He has a very important conference coming up at the end of the month, that he is super excited for, so he thought he should go ahead and schedule a clinic visit to see how he could get to feeling better.  Since he has been coughing so much more than normal, we figured for sure that the sinus infection was beginning to take over and that it would be time for IVs.  We were so sure that we even accessed his port before heading out yesterday morning.

He was more than a little shocked to find that his PFT numbers hadn’t changed since his last visit.  He went over all of his symptoms with his CF doctor and came to the conclusion that he just NEEDS A BREAK!  I completely trust the opinions of his CF team, especially since I happen to agree with them.  It is really hard for him to follow these orders though.  Being a business owner doesn’t lend itself to easily being able to take a complete break.  Plus we have so many interests that we want to pursue and take part in.  It’s hard to miss out on things, but sometimes you just need a break.

Working man

Doctor’s orders are to relax more, get back into a consistent routine of doing all treatments, and get some exercise to strengthen those lungs.  So far, so good… he is still sleeping as I write this.  Sometimes I forget that it takes him a little longer to catch up on rest (not that he would ever admit that though).  All I need is one good sleep and I’m good to go again.  But every now and then he needs to learn that taking a couple days to take care of himself will pay off in the long run.  While I am glad that he isn’t as sick as we thought he was, it makes it harder to convince him that he still needs to slow down or he will be that sick next time.

I Outrun CF

March 21, 2011 in Filed Under: Cystic Fibrosis 1 Comment

Yesterday Jesse and I participated in the Outrun CF Virtual Race.  Hundreds of people across the country signed up.  Everyone mapped out their own course near their house.  It’s so neat to think that so many of our CF friends were participating in this cause at the same time.  Check out the Outrun CF facebook page to see how others ran their race.

Outrun CF

How did we outrun CF?  Well, we actually walked.  Jesse has a nasty sinus infection that is slowing him down a bit lately and I wasn’t feeling too great myself so we determined that running wasn’t the best idea for us.  But we still wanted to be in on the action.  We put on our running shoes and did a lap around our neighborhood.  That’s what was so great about this race, no expectations about how far or fast you needed to go.  Everyone participated to the ability that they were able to prove that CF was not standing in the way of what they wanted to do.  We are definitely looking forward to future races where we can push ourselves a little harder.

Meet Denise

March 8, 2011 in Filed Under: Cystic Fibrosis, General 4 Comments

Yesterday we had the opportunity to meet Denise Fahr. We’ve been keeping up with their blog ever since her husband, Jim, had his lung transplant. She was vacationing in Florida with her parents, just about an hour drive from our house. It’s so funny to meet people in person after reading about them for so long. The first thing I said to Jesse when we saw her walk out of her hotel room was, “Wow, she looks just like her blog pictures!” Duh, not sure where that thought came from. I think I was just a little bit surprised to recognize someone I had never met before.

Denise was great. She is such a sweet and completely genuine person. It’s amazing how happy and positive she is, especially with all that they have been through this year. We were planning to sit around the pool with her, but the weather was just a little too chilly for that. Instead we chatted for a while and played some mini golf that was at the resort she was staying at.

Denise and Jesse

Us playing mini golfI was surprised at how easy she was talk to. Meeting someone for the first time, I wasn’t too sure what all we would talk about. The best part was the complete understanding of our situation with need for explanations. When we talked about cooking, I mentioned something about needing to be extra creative with recipes that I could eat that would still have enough calories for Jesse. I usually feel the need to explain why the amount of calories we consume at dinner is so important… CFers need tons more calories than most people. She, of course, got that right away. When we left the hotel room to walk around the resort, she checked to make sure walking that much wouldn’t be too hard for Jesse. Jesse does have days when he tires easily while walking, but mostly that’s no problem at all. After walking for a while, Jesse had a cough spasm. Normally that would have been a bit awkward because he is trying to communicate to people that he is okay even though he looks like his head is about to explode. It was nice to see that it didn’t catch her off guard.

Denise and me

I’m very glad we made time to get to meet her. Next year she expects that Jim will be able to travel with her. We will look forward to the chance to get to meet him as well. She said that Jim and Jesse are a lot alike. I hope we have lots more opportunities to meet other CF families also. That is just part of our lives that we don’t share with too many people. We are grateful that our friends make an effort to understand more about CF, but it’s something that they just can’t get.

Meeting Denise