Hi, sorry you are having such a rough patch. And the bright side might be if they were able to catch the MAC early on.
I started culturing m. chelonae, well I first cultured it in Dec 2006, but at the time my clinic was a doctor who traveled monthly to our hospital and the sputum cultures weren't routinely being tested for afb's and so there is a possibility I had long before I initially cultured it b/c it was there on the first "check".
My pfts when down drastically my first year of college b/c I didnt take care of myself well at all for the first half, and the second half, I got better with treatments, but still wasnt doing them enough (ie: only one a day when I should have been at least two a day). I lived in the dorms and I believe that is how I got the non-tb bacteria (showerheads). I didnt see my cf doctor for an entire year and then for the next 6-7 months was unknownly not being checked for any non-tb strains.
Week before being dx'd with m. chelonae was
FEV1: 52.1%
Beginning of hospital tune-up
FEV1: 57%
End of hosptial stay (week and half only)
FEV1: 58%
In August of 2007
FEV1: 50%
For rest of the year until February 2008
FEV1: average of 48%
February 2008 dipped to
FEV1: 46%
Until Summer of 2009 I have
FEV1: 45-48%
*I was transiting from my ped doctor to an adult doctor from about December 2007 to May of 2008. And the entire spring of 2008 I felt horrible (b/c I was being treated for m. chelonea when I had transitioned to m. abscessus which was discovered when I finally dropped my ped doctor). What was funny to me at least was my last clinic I found out that the worst besides m. abscessus was actually having tuberculosis and I started laughing b/c for like 2 years I was under the assumption my bacteria could morph even worse so I was always afraid to hear a new name with the culture results, so hearing that I was already with the worst one, actually made me feel awesome for doing as well I had been especially b/c I still was going to college.
Last spirometry was FEV1: about 40-42% (My good blows are about 45% nowadays about 1.5 L)
(But during 2009 I also started culturing b. cep)
Last culture showed a step down from m. abscessus to m. fortuitum.
I also know that exercise has helped me move my fev1 up and down about 5% and that is with minimum exercise like walking during the summer and stuff like 2-3 days a week is all. I also just got prescribed oxygen at home to sleep and exhurtion and it has been a hard time getting myself back into at least walking on my treadmill, so I somewhat know that feeling of what, I have to use o2?
Last piece of advice, <b>do whatever you can to keep your weight and appetite UP</b>! I didnt find out till later but I think lots of the non-tbs can really mess your appetite up and so most of my struggle was with weight not with lung functions the past 3-4 years since I have cultured it. And when I weighed the most back in the summer and fall of 2008 (after switching to new awesome adult docs) I actually didnt culture m. abscessus for like 6 months!!!! So I felt really great even though my lung functions Until about February 09, when I found out I had b. cepecia too.
I dont know, I think for what I have, I havent done too bad as far as declining, about 10-12% over 3-4 years. I know that if I would have taken appetite and weight more seriously I wouldnt have dipped too, or not as "fast". I also after that first year of college have always done at least 2 treatments a day and if not 3 or 4 even for weeks at a time just to maintain. I have been much more compliant the more I learned about CF and I think that helped me as well.
Sorry so long, but there is my exerience with a non-tb bacteria.
Tabitha