PFT Results and Update from Clinic

So yesterday I headed down to clinic for the first time since getting out of the Hole. It's always nice to see where you stand after six or so weeks out from a tuneup and I was definitely excited to see how it would go. Now me and CF Clinic have quite a history together...and by history I mean a dysfunctional relationship. To say that I haven't been the best at going to clinic would be a gross understatement. The problem is that I've always had very consistent hospital stays and never really saw the need to check in with my doctors unless I wasn't feeling too hot. And lately I've been doing so many clinical trials that I could tell you almost week to week what my lung function is. Honestly, the biggest reason that I want to go to clinic is to see what my FEV1 is. But after much strong-arming and guilt tripping by my CF team I decided that I would bite the bullet and see them in clinic. I'm very glad that I made that decision.

We did all the regular stuff that I'm sure most of you do each and every clinic visit. My visit started off with the social worker and we just discussed some different themes I see happening in the CF community right now and what we'd like to see in the future. Fortunately, I'm not having any insurance issues or family issues at this time (although with Mandi in the house that could change at the drop of a hat...kidding babe). This was followed by a visit from the dietitian and an intern and Glenda, who is like the CF czar. Glenda makes sure that I'm always on top of my game and was one of the main reasons that I made sure I got to the clinic. She can guilt trip with the best of them :) We went over the basic stuff like how my lungs were doing if I had an increase in cough, how my appetite was and overall how I was feeling. We of course had to go over my medicine list, and you would think at some point I would write it down or have it on my phone, because I seem to always struggle to come up with all of my meds. I'm sure each clinic is a little different from place to place but I'm also sure we have common themes that are similar. But this is basically how clinic goes each and every time.

I almost forgot about the most exciting part! My appointment actually started off with a visit from Darcy who does our PFT testing. Now I felt pretty good heading into the appointment but knowing that my last FEV1 was at 61% and that I haven't been able to run for a few weeks because of my foot, I really wasn't sure what to expect. To my delight and surprise I blew in a FEV1 of 73%! According to them that was one of my best in clinic FEV1 in years. I also blew an 85% FVC which you have to go back to 2003 to match. I got to say it felt really good to see that number increased so much and just validates all of the commitment and hard work I've put in since I've gotten out of the Hole. It's been very rare for us to miss a day in the gym and if we do miss, we make sure to get a walk or a bike ride in. We've also been eating much better and although that may have no effect on the lungs, I can definitely tell and how it affects me overall.

Now the key is to not get comfortable. I can be some fat cat who thinks he has it made just because I have a really good PFT or I can use this as even more motivation. If anything what this shows me is that if I work even harder I may be able to raise those numbers up even more. I haven't been perfect since I got out of the hospital, but I strive to be perfect in taking care of myself each and every day. After the test today I thought to myself what would've happened if I was 100% compliant on both treatments and exercise this entire time? Of course I'll never know the answer, but moving forward I have another chance on trying to achieve perfection. Getting comfortable has always been one of my big battles especially during these times that I feel great. I have to remember that CF never takes a day off and I can't afford to either.

Who Wants to Dream With Us???

Today is the day that Ronnie and I have dreamed about for what feels like forever. We have dreamed big and it feels so incredible to see our dream coming true. I could not be happier or more excited than I am today, to see where else our dreams will lead us. What am I talking about you ask? Let me back up and give you the full story so you can join in on our dream.

As most of you know, Ronnie and I have worked together for the last 10 months. In April of last year, Ronnie was asked by an incredible couple, the Gettels, to create a web site for the CF community. The charge was undefined, but the possibilities lit a fire under Ronnie unlike anything I have ever seen. His love for the CF community and his desire to support and encourage them fueled his imagination. Our life became one huge brainstorming session. This dream became a reality with the formation of an organization called CysticLife. And we were well on our way after assembling a dream team that consisted of Ronnie, two brilliant web developers, and his beloved (this would be me, Jezzabel prefers unemployment) to write, design and spread the word.

To us, CysticLife (CL) has become a dream not only for an organization, but for a community. CysticLife isn't just a new organization; to us, it's a new movement. We want CysticLife to be a place where people can come when they're down to be picked up, and a place to share your accomplishments when you're riding high. It will be a place to gain knowledge from your peers who have lived it and get it. CL is about becoming comfortable with who you are and what CF means in your life. It is about transforming the CF community into being their own cure. We want to give people the skills to manage their CF and take care of themselves. We want people to go through life with a smile on their face, a can-do attitude and the confidence to take on whatever challenges might come their way.

We have taken our first steps to making our dreams come true. Today, we launched CysticLife.org, a social network (like facebook) made specifically for the CF community. On CysticLife.org people can post blogs, ask questions, maintain a profile, contact others, and search members by age, location and relation to CF. This is going to be an incredible resource, and the best thing is...this is only the beginning.

We are super excited about this site and would love for you to check it out, and hopefully share in our excitement. We truly love and value each of you and your opinions. You never hold back on RSR when it comes to sharing what you think, so we're hoping you do the same for CysticLife.org. We know if you think it's terrible, you'll tell us like it is, and that if you think it's great, you'll join in our on dream. We're really shooting for the latter ;-) !!!

Oh yeah...in my excitement I forgot to give you the link. Here you go: www.CysticLife.org

A Panther at My CF Clinic

Here are some more videos from the clinic:

To understand the next couple of videos I suggest you watch this clip from American Idol from a couple of seasons back. His name is Eccentric and he is a self-professed panther. He's known for a couple of "panther" moves including his best, "the panther swipe". This clip makes me laugh every time.

So for some reason Mandi and I started talking about this guy in clinic (it can get boring in there) and she was having some trouble with the panther swipe. Not that I'm any better, but I think it sounds a little more like the panther himself. We got interrupted by the dietician (how rude :)) but Mandi was able to squeeze in one last swipe.

We were at it again after the dietician left and Mandi really started to get it down. She was becoming a panther right before my eyes. I'm so proud!

That concludes the panther swipe videos and I hope you enjoyed them. I still haven't gotten a bed from the hospital and I'm just waiting for the call. More videos will be coming your way shortly straight from "The Hole".