Wednesday, June 12, 2013

Surviving the sickness

I’m still feeling the same as I did on day 5. I basically had no cough from days 2-4 but from day 5 through today, day 11, I have been coughing. During those days it hasn’t gotten better or worse, just stayed the same. But compared to the day before I started Kalydeco my cough is significantly less and significantly less productive and the color for the most part is much lighter. Mostly in the morning and following my hypersal / vest treatment.

I was questioning why I stopped coughing and then started up again but after finding out at least one other person experienced the same thing helped ease my mind a bit. I still don’t understand why, maybe my body was just adjusting to the medication but it still was disappointing to have the cough come back, even though it is SO much of a difference. I had imagined my lungs clearing all the mucus out and it being gone forever. Wishful thinking I suppose!

So for now I’m calling it a victory as long as I don’t feel myself going in the opposite direction. I can live with stability, I welcome stability. And so far so good, I don’t think I’ve gotten the bug my kids have. The baby spiked a fever of 103 last night and was up every two hours. She slept with me the whole night and we wound up taking two cool showers because it felt like she was burning up. Logan woke up crying because his throat hurt him so much and croup was making him cough. I hate not being able to fix my children’s pain.

Got in a 2 mile run this morning, but before I got out of the car to start my run I text my ‘bestest’ CF friend “L” who had a super important clinic visit today. She had just found out that she passed the screening tests and was now enrolled in the Vertx Phase III trial. She needed this and prayed for this and it came along at the perfect time. Words can’t explain how happy and excited I am for her. A new beginning.

How we both wound up in this place, together, going through this at virtually the same time is a bittersweet story. I knew of her and she knew of me for a while, but it wasn’t until years later that she found me on facebook thru our mutual friend Nicole. The three of us all went to the same CF center, had the same doctor and were pregnant at the same time. L and I bonded in a way we never imagined - having to mourn the loss of our friend Nicole and her baby. Unthinkable circumstances brought us together. But we understand each other, our fears, our hopes, our ups and downs in a way that no one else can. In a way I am more excited for her to start the meds then I was for myself. I’m crossing my fingers she gets the real thing.


  1. There is nothing like this CF community. WE were all given this disease but it has shaped us to no end. You know when you find a great friend in this community. You automatically just click with them even if you have never met them in person. It's not the "normal" but I wouldn't have it any other way.

    I hope those adorable kids of yours get better soon :)

  2. Hi Karen, I'm on the Denver trial for residual function. So far I've had the drug for 2 weeks two times. Each time I feel great the first week, less cough amd more energy. Then the second week I start coughing up more and start to think I'm on placebo. I start 8 weeks of the drug at the end of the month. I can't wait. Thanks for sharing your experience. I was starting to think it wasn't going to work for me. Guess I need to be on it longer!

    1. If I didn't know I was on the drug I'd question if I was on the Placebo sometimes too! I've now been on it for 2 weeks and yesterday and today my cough has decreased again, including my morning cough. I hope it stays this way. So don't give up hope!