ToniV 2.0: “Works as Designed”

Words Matter

A few people well acquainted with medication in general, and patients who have taken Orkambi since the studies began, have mentioned the symptoms I am experiencing are not “side effects” in the true sense of the word.

Let’s simplify this.

  • The Gene Mutation has caused a specific action within each cell of my body to not act correctly for 43 years.
  • I started to take the Medication, Orkambi.
  • The thick mucus is no longer being made.
  • Now, the mucus must get out somehow.

Behind the mucus on parade is lung tissue un-cluttered by CF mucus, which SO much potential.

Can you tell I am very excited?? Throwing way some AP style rules and Newspaper and Text Paper guidelines – I don’t care if I use 2 quotation marks, begin sentences with the words, “And,” or “But,” and leave sentences without their verbs, actors, etc. Screw you, grammar! I’m flipping excited!! (As excited as I can be without having an asthma attack or having to run to the rest room.

So, I have symptoms of being really sick – think about having the flu and pneumonia at the same time, with a bit of the zombie virus from The Walking Dead thrown in there for fun – but they are the results of the medication working.

I just need my body to purge all that crummy mucus. In each 12-hour episode after taking each dose, I go through a sting of various symptoms – chest pain, wheezing, shortness of breath,chest tightness, low oxygen levels, coughing that ranges from ‘hacky and inflamed’ to ‘wet and liquid’, a fever and aching body, and now some sudden, sharp abdominal pain less than an hour of eating any of the fat required.

*Remember, we need to eat 20 mg of fat with each of the two daily doses of Orkambi.

“Works As Designed”

So my symptoms/complaints are simply the results of the medication doing its job,. The medication Works As Designed. This means that it’s doing the job it as designed.

Let’s say you mix up some eggs, flour, oil, water, eggs, etc., mix it in a bowl and pour it into a greased pan that you then slide into a warm oven. After 30 minutes, you stick a toothpick in the cake, and the wooden stick comes out clean, and you eat the cake. Is the fullness you feel, or the jump in sugar in your bloodstream a side effect of making the cake? NO. The cake is doing what it’s designed to. Orkambi does the same thing.

Orkambi is the new Software by which my body now operates.

So the purge and symptoms I am experiencing after taking Orkambi is simply the result of the medication working as designed.

it’s phsycilly and mentally draining, but ideally, on the other side of this, I will experience some benefits.


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