I promised you a faithful detailing of all of E’s symptoms and changes while on Orkambi. Please keep in mind that every person is different and Orkambi will affect each person differently. That being said, I can’t even think about the newest changes in E since starting Orkambi without tearing up….

We have taken her off ALL insulin! 

I wrote in my last post that her sugars started dropping as soon as she took her first dose of Orkambi. We made changes to her insulin dosages, but she continued to have lows. Please read below the correspondence between our endocrinology nurse, who is a diabetes educator, and me.

Dear C,

We made the changes that you suggested in your email last week, but E continued to have lows. Since she was already on the lowest setting of basal, we stopped it completely. We also stopped bolus to see how her body would react. That was on Monday evening. The first two days, she spiked after breakfast (Tues and Wed), but not any other time of day. On Thursday, we gave her a Novolog shot with breakfast, but none the rest of the day. She had perfect numbers all day. Then on Friday, E suggested changing what she eats for breakfast, so we did that with no insulin, and she has not spiked over 200 since then. She even had Dunkin Donuts on Saturday morning and didn’t spike. 

I’m sure Dr. V would have preferred that we discuss this with her first, but I called and could not get an appt until June. E is wearing her continuous glucose monitor and we are closely monitoring her sugar, making her spot-check with a blood glucose check at 1 hour post-meal.  I understand that these numbers may be her body compensating for that loss of insulin; they could be a “honeymoon” period with this new drug; or they may be a predictor of the future. We have very realistic expectations and are frequently reminding E that this might not be the end of her CFRD. We are cautiously optimistic, but of course, want Dr. V’s input in this matter. 

C replied:

It sounds like what you’re doing is working and her blood sugars reflect that. Dr. V agrees. If she is going to eat something that typically spikes her, just cover with Novolog. 

Can you believe that? I had high hopes for Orkambi, but I could never have imagined that it might affect E in this way. If you read the email I sent to the diabetes nurse, you will see that I have realistic expectations. I know this may not last. I have endlessly discussed it with E to make sure she is not crushed later in time if we have to return to the insulin pump. But for now, my joy is complete. I said from the very beginning that I would take CF any day over diabetes, and even if it’s only for a short time, God has answered my prayers! All praise and glory to Him!

Words Cannot Express My Joy….

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