A couple of months ago I had a CT scan done to check on how my lungs are going. I was curious to find out how they looked after being on Kalydeco for almost a year. I was expecting not so great reports as I've plateaued in the last few months in terms of lung function (which I will explain latter. So anyway I was VERY pleasantly surprised by what was explained and showed to me....
First Post-Kaydeco CT Scan
2. The CT part of the scan (the detailed inside look) revealed that my lungs are in much better shape than expected. The upper left lobe sustains the most (extensive) of bronchiectasis & a less on the right upper lobe, but I mostly amazed that it is no present in lower half of my lobes. In the picture below if you drew a line above the words "upper lobe" that's where the bronchiectasis remains. The AMAZING thing is all the xrays before Kalydeco indicated I had bronchiectasis & crepitations (crackles) came from my lower left & right lobe too (lesser than the upper, but still there).
Post Kalydeco scan: neither are present in the lower half of my lungs!!!! ♥
So back to my FEV: aka 'Lung Function'. Recently I have been looking at what happened around the time I plateaued from 65% - 55% (on K) several factors were clear, a cold in the house, weather/season changed (winter), asthma flared up, hormones/PMS was increasing inflammation in my lungs... blah blah .... anyway after a long 'THINK THINK THINK'! I remembered that at the same time (for the first time since starting Kalydeco) I ran out (stopped taking) of Chlorella. Up to that point I was taking 45 tablets a day + the chlorella extract (30-60ml). When I started taking Chlorella (before K) it made me feel much stronger within days, once on K, my improvement was rapid. Then when I stop Chlorella, I went down again (plus these other factors).
About 4 week ago I came down with a proper flu. In January I had a cold, FEV droped to 46%. After antibiotics & exercise I managed to get it up to 1.35 = 48%. I was not happy that I had dropped from 65% let alone my 55% benchmark. Seeing how the oral/inhaled antibiotic were not really effective, my psuedomonas was still heavy (dark green) and the fact was if I didn't DO something different the next immediate option was IV antibiotics.
I stopped all the antis. Ordered Chlorella and Liposomal vitamin C.
and started nebulizing Ionic Sliver and GSH (L-Glutathione) 3-4 x a day....
Taking 45 Chlorella tablets (200mg a day) and 10ml (2000mg) Lipo C 3x a day
(I have experienced NO adverse side effects from these natural supplements)
I have today been off antibiotics for 29 days. In the first few days my FEV went to 1.43. Then a week or so later 1.50. Today it is 1.60 = 54%! Off all antibiotics!!!!!!! The colour of my PA infection has become light yellow and the mucus production is very low.This is a HUGE step forward for me because since the age of 15-16 I have been attempting to break the cycle of antibiotics, but I couldn't go for more than a few days before I became heavy chested, heavy pseudomonas again. I have NEVER had an FEV increase off antibiotics.
Along with this change I am now able to exercise more. Grant it I have only done 2 major sessions during this period, so I can only hope to see more improvements as I get into a better exercise routine. Happy to say though I ran and jogged the distance of two ovals yesterday.. twice!!! Plus walked home. As since 2009 I never could have done that. Kalydeco is the game changer!! I now can absorb all the natural things I take, have the energy to keep on top of life.
So this is my current little experiment/GOAL: Can I get back up to 65%???
We'll see, I am so happy thus far with this progress, will update you as it happens!