I have advanced, severe lung disease aka bronchietasis. My mutations are R117C and DeltaF508. Since starting Kalydeco off-label, I have had some significant changes. I started almost 2 months ago.
1. Sweat Chloride is now normal.
They tested my sweat before and after kalydeco. It went from 77 to less than 10, i.e. is now normal. The chloride was so low they could not detect a specific number.
2. Bronchial wall thickening has improved.
According to my latest CT report:
3. While my last lung function, taken 6 weeks after starting K was the same, my breathing feels deeper and I am sleeping less. I believe that due to the extent of lung damage, it may take years to fully heal.
My hope and prayer is that with intensive exercise - Pilates, yoga and walk-jogging, antioxidants - NAC and Curcumin, essential oils - eucalyptus, oregano, cinnamon, peppermint, thyme, and an organic diet rich in fruit and veggies will bring further healing. I really want to recommend Pilates to all CF patients with low lung function as it is one of the few exercises that I can manage to do and that also works up a sweat. It also tones the whole body.
I am also considering trying serrapeptase. http://www.naturalnews.com/026360_serrapeptase_natural_health.html. Has anyone had any experience with that? I am still researching as I am not sure if this enzyme would be safe.
I praise God for this amazing progress. I have never before had a chest image with reduced bronchial wall thickening. I also wanted to thank Stephen on this forum, whose posts about Kalydeco off-label first alerted me to the possibility that this breakthrough drug could help me too. Words cannot express my gratitude, Stephen. Thank you so much.
NOTE: If you have residual function mutations and need help with scientific articles to support your insurance appeal to get Kalydeco off-label, I can help.
1. Sweat Chloride is now normal.
They tested my sweat before and after kalydeco. It went from 77 to less than 10, i.e. is now normal. The chloride was so low they could not detect a specific number.
2. Bronchial wall thickening has improved.
According to my latest CT report:
FINDINGS:
There is no change in extensive bilateral bronchiectasis which is most mass in the left upper and right lower lobes. No change in cavitary nodule in the superior segment of the right lower lobe which measures 2.9 cm. Improvement in bronchial wall thickening in the right lower lobe, with additional mild improvement in bronchial wall thickening in the left upper lobe. No change in numerous centrilobular pulmonary nodules or mosaic perfusion from the previous examination. No new consolidation or pulmonary nodule. No pleural effusion.
No lymphadenopathy.
No change in heart or mediastinum.
No suspicious bone lesion.
Visualized upper abdomen is unremarkable.
IMPRESSION:
Features of cystic fibrosis and chronic airways infection with improved bronchial wall thickening from the previous examination. No new nodules or consolidation. No change in cavitary right lower lobe nodule.
END OF IMPRESSION:
3. While my last lung function, taken 6 weeks after starting K was the same, my breathing feels deeper and I am sleeping less. I believe that due to the extent of lung damage, it may take years to fully heal.
My hope and prayer is that with intensive exercise - Pilates, yoga and walk-jogging, antioxidants - NAC and Curcumin, essential oils - eucalyptus, oregano, cinnamon, peppermint, thyme, and an organic diet rich in fruit and veggies will bring further healing. I really want to recommend Pilates to all CF patients with low lung function as it is one of the few exercises that I can manage to do and that also works up a sweat. It also tones the whole body.
I am also considering trying serrapeptase. http://www.naturalnews.com/026360_serrapeptase_natural_health.html. Has anyone had any experience with that? I am still researching as I am not sure if this enzyme would be safe.
I praise God for this amazing progress. I have never before had a chest image with reduced bronchial wall thickening. I also wanted to thank Stephen on this forum, whose posts about Kalydeco off-label first alerted me to the possibility that this breakthrough drug could help me too. Words cannot express my gratitude, Stephen. Thank you so much.
NOTE: If you have residual function mutations and need help with scientific articles to support your insurance appeal to get Kalydeco off-label, I can help.