, , ,


I had a checkup with my CF doctor recently and he had some good news about research that I want to share with you today!

The appointment itself could have gone better – I ended up on oral antibiotics. It’s been two weeks now (out of 3) and I’m seeing some improvement, so I’m grateful for that. Weirdly, my voice has been a topic of conversation with my doctor lately. He even had me be seen by an ENT, a first for me. I’ve been taking an inhaler for a couple of years now that brings a couple of fun side effects with it. One is a monthly case of thrush, which isn’t a big deal. The other (at least we wonder if it is caused by the inhaler? Hard to tell..) is that I’ve been hoarse and losing my voice a lot. People often assume I have a cold (I don’t). The only information we got from the ENT is that I have some scarring on my larynx that can’t be reversed. Hm.

Also my lung function has been low for quite a while now, lower than anyone is comfortable with. Both my doctor and I like to think that it can come up some. There is a cyclic component to CF that does bring hope of improvement, but we can never know for sure. Anyway these things led to the decision to do antibiotics and I have felt improvement in both areas, which I am grateful for! Not sure how much “room” I have gained in my lungs but even by reducing congestion I feel relief. So as always we are grateful for your prayers in regards to these lungs of mine!

ANYWAY on to the good news! To be honest I don’t keep up with CF news much. We spend more energy on living life despite CF, but we are grateful to all who work daily on our behalf. So you may know this already but it was news to us. There is a new drug coming down the pipeline that is scheduled for release in the next 6-7 months, and it sounds like an “improved version” of the one that came out two years ago, which I blogged about here. The last one did NOT work out for me, although I think my brother Mark still takes it. I got pretty sick soon after I started it and we think that I was one of the people where, instead of helping me some, it hurt me some. Or at the least, I just didn’t benefit from it. The new medication that is coming is said to be like the Orkambi, but minus the negative side-effects. I’m listening!

Basically two years ago Orkambi changed the starting point for research, and many of the new medications coming down the pipeline are springing off that platform. It is exciting stuff! Do you see where we’re going here? …..

That’s riiiiiight, our Great Strides walk is coming up NEXT SATURDAY and you have the opportunity to be a part of this exciting moment in CF research! If you stuck it out this long through a very wordy post, I thank you.. And, here’s the link to join my team! Or just donate! 

Thank you for giving to this cause, and for the love and support you give our family. Sending the love right on back!