When the Cure Hurts

I can always tell when my lungs are feeling their best because I can laugh freely and I don’t stifle it to avoid a coughing fit. When I stopped taking Orkambi, I couldn’t do that so well. So I think of that and I smile.

Last Wednesday, I started taking a medicine called Orkambi – the first type of medicine to treat the underlying defect of Cystic Fibrosis (CF) at the cellular level. It’s pretty cool and very new.

When I was in college, I was a part of the clinical trials for this drug and eventually started taking it “open label” until it was approved by the FDA in 2015. Shortly after though, I found out I was pregnant with Simon and since there’s no data on what it does to a developing baby, I decided to discontinue taking it. After Simon was born, I waited to restart since I was breastfeeding. It is not known if it transfers into breastmilk and if so, what that small amount would do to a baby.

Now that Simon is almost 10 months (!!!!), nurses less, and my baseline lung function is lower than it used to be, we decided it would be wise to restart Orkambi. We will get monthly labs for Simon just be sure that he’s doing well.

I have a lot of mixed feelings about restarting this medicine. It’s an amazing drug. It works and it’s been so rewarding to be a part of making it happen in the trials. But… it’s not what we all hoped for.

It’s not a cure and doesn’t completely fix the problems caused by CF. It is a start though, and in my experience on Orkambi, I was living a better quality of life, had no pulmonary exacerbations/hospital stays, and my lung function stayed steady. Sounds good right?

The side effects though. These should be temporary, but they are not pleasant.

Within a couple of hours after my first dose, I had a hard time breathing even laying down. Shortness of breath continued the next day, then fevers came. Next day, no appetite. More coughing. Night sweats and hot flashes. Tightness in my chest. Oh-so-tired (thanks Simon, for letting me nap with you).

I feeI worse now than I did before I was admitted to the hospital a few weeks ago (and I just got to feeling better!). So, this Orkambi, with all of its anticipation, hope and excitement has me feeling pretty rough right now. I’m holding on to hope that I will feel better than before, with a new kind of clarity in my lungs, more stamina, and less cough.

I can always tell when my lungs are feeling their best because I can laugh freely and I don’t stifle it to avoid a coughing fit. When I stopped taking Orkambi, I couldn’t do that so well. So I think of that and I smile.

-Gillian

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