Wednesday, February 20, 2013

It's Complicated

I had to wear a mask today at clinic because
they are trying to keep all of the cystic
 fibrosis patients healthy. They don't
want the flu and other germs to each other.

I will begin this post by acknowledging how dumb I am. The worst part about this clinic visit was realizing that truth. My PFT that I did January 18th was not as positive as I though it was. I thought my FEV1 was 54%. It turns out that I was looking at the wrong column like an amateur. My FEV1 was actually 45%. That's a big bummer, but there is some good news as well. Today, my FEV1 was at 50%. I didn't make it to my goal of 60%, but I also started out lower than I had thought. At first, I was upset and slightly frustrated, but it all boils down to the fact that my numbers went up. That's all I can ask for.

Now, if you recall, on January 18th, I was also weighed. I was down to 106 pounds which is the lowest I've been since probably high school. Today, I was up to 113 pounds. My doctor was very happy to see that, but she still wants me to keep gaining. I need to put on at least 7 more pounds which is very doable.

The best part of the whole clinic visit was my conversation with my doctor about the future and my desire to have a child. We talked for a while about it, but long story short, she said there is no reason I can't have a healthy, normal pregnancy. That was music to my ears! Eldon and I are not quite ready for that step yet, but it was so nice to hear that I have my doctor's support when we do decide to try.

Moving on to my plans for the next few months... My next clinic appointment is May 29th. I have decided not to set an actual number goal because my doctor feels that 50% may be my new baseline meaning that it might not go up much more. I still would like to make it back to 60%, but I have accepted the possibility that it might not happen. I'm still going to fight for every little bit of lung function I can get though. I have gotten on the workout train, and I have no intentions of getting off. I'm also setting the goal for myself to be 100% compliant with all of my medications and treatments. I'm on day 3 of that! :) You've got to start somewhere.

In the fundraising world, there are a lot of exciting things happening. I am the chair person for the Great Strides walk in Knoxville this year. Even more nerve wracking than that, I will be speaking at a black tie event for cystic fibrosis next week. It's called Martinis and Movies, and I am very excited about it. I got to buy a beautiful dress and shoes to wear for it! What girl doesn't love to do that?

So overall, today may have started out frustrating, but I am so excited for what is to come. I believe that things are going to continue to improve!

Happy Wednesday, everybody!


  1. I'm proud of your for improving your lung function, huge weight gain (!), continuing to exercise AND starting your 100% compliance with treatments and meds! I completely understand your frustration with not seeing a huge jump in the PFTs (and I actually read mine wrong that last time I was doing my test only to be corrected by the RT and feel really stupid), but as long as you're not losing! :)
    I'm excited to hear how the speech goes at the black tie event - what an honor to be asked to speak! Keep up the GREAT work, Kayla! :)

  2. Well it looks like you had a GREAT appt. PFT numbers going in the right direction which is awesome! Weight is up another plus! I love how the doctor is supporting you on a future pregnancy. It is always good to get the green light from the doctor. I feel that my CF doctor is another relative in my family. I know kind of odd right?

    I am so glad you are so involved in the Cystic Fibrosis Foundation. So you get to speak at an upcoming event? That is great what an honor. Eventually, that is my goal to start talking about this disease to people more publicly. Good luck with the speech.

    One last thing to leave you with..........Just remember the PFT score is just one part of the clinic visit. That is why we do cultures, weight check, doctor checks our lungs etc. WE tend to focus on this number a lot. I honestly think if you are feeling good, your weight is good, your able to do the things you have always done with no lumg impairment then you are doing FANTASTIC! Remember that our lungs have taken a beating over the years and its going to take baby steps for them to improve!

    Keep up the good work cyster! It's all about the baby steps in life.

  3. if it makes you feel better, at my last hospital the way the PFTs were printed out was SO INCREDIBLY CONFUSING that even after being shown multiple times where the FEV1 percent was on the page... I could almost never figure it out myself. It was like trying to decode another language! My new hospital has a much more easily readable format. I've definitely done that, though - where I thought my number was better than it was because I was reading the wrong one. It's never a pleasant realization! Good job for getting numbers and weight up, though. I'm so excited for you in the future as you guys embark on your quest to be parents. I never thought that my body could handle pregnancy as well as it has, and it's been an absolutely amazing experience!