Saturday, August 1, 2015

Kalydeco Is Not A Cure

Great, amazing, wonderful things are happening in the CF community, and have been for the last few years. The release of Kalydeco in January 2012, and now Orkambi in the beginning of July. They're making huge, positive impacts on a great deal of the CF population!
Unfortunately, I've heard these medications (more so, Kalydeco) referred to as a cure more times than I would like. They are NOT! They help fix the mutated gene, but do not completely correct/reverse it.

If Kalydeco was a cure:
  • My lungs wouldn't be filled with bacteria-infested mucus
  • I wouldn't still need to do 30 minutes of Vest twice a day (or more when sick)
  • I wouldn't need at least 4 nebulizer treatments everyday
  • I wouldn't need to swallow at least 15 digestive enzymes a day
  • I wouldn't need several different vitamins and other various pills per day
  • I wouldn't need to visit my CF clinic 3 hours away every three-four months
  • I wouldn't have had an awful Spring with numerous episodes of hemoptysis
  • I wouldn't need annual chest x-rays and blood work
  • I wouldn't need a high-fat, high-calorie (watch the carbs & sugars though because you're borderline CF Related Diabetes) diet
I started Kalydeco on August 30, 2013. I expected immediate, dramatic changes when I first started the drug, but didn't notice too much of a change. Even though all of these things are true, I'm very glad that I had an excellent talk with my CF doctor (have I mentioned how much I love her?!) was
Dr. Dowell with Anna
from my clinic appt
reminded today how lucky I am to have Kalydeco and how much it really is positively impacting my life.
  • Typically, CF patients exhibit a slow, steady decline in lung function over a few years time. My doctor kindly reminded me today that my lung function has been very stable over the last two years. Even when it declined during the beginning of pregnancy, it shot right back up at the end and has been stable since then.
  • I have not had to increase my enzyme dosage which is also common for CF patients, which means my pancreatic function is stable.
  • I've slowly and steadily been gaining weight over the last two years. This is one of the positives I have noticed over the last two years and have been very pleased with.
  • I had a very easy, healthy pregnancy which may not have been the case without Kalydeco.
Despite not feeling immediate results, I am VERY lucky to be on Kalydeco, and now I can positively answer people when they ask how it's been working for me. I'm very happy to have 'normal' lung function, even if it means doing all of this work to keep it there! I hope it stays like this for a long time. :-)

Current stats

1 comment:

  1. I was lucky enough to be able to write a small essay on what kalydeco meant to me, and how it affected my life and it was based around the statement that it's often referred to as a miracle drug. While I don't personally believe it's a miracle drug it represents something much more valuable; hope. Hope for a longer journey, hope for small glimmers of normalcy, hope for a cure.

    I loved this post. I couldn't agree more with you, it has made significant improvements in my life, even though my life is still hard. We are very lucky to have companies devoting their time, funds, and knowledge to helping us.