sideswiped

 Yesterday I heard from the CF team in Colorado. My lungs don't look very good. They had the preliminary sputum culture results & so far I am growing 3 different types of pseudomonas bacteria and, most very unfortunately, a gross amount of mycobacterium. I had a lung CT scan performed there last month and it showed significant craters and cysts and other such damage, suggestive of mycobacterium infection. Eric and I didn't say anything to everyone because we were hoping beyond hope that it wasn't true.

THIS is why I've been feeling crummy for so very long, everyone. A lesson to other CF-ers out there: always always go with your gut & remind yourself that you know your body best. Ultimately, I'm urging all of you CF Warriors out there to make your care team pay attention to you, especially if you feel in your heart of hearts that something is not right-because all you have to lose if you are not right is time. But I'm here to say that you will lose a lot more if something goes undiagnosed for too long. Anyway, I just had to say that. Moving on, mycobacterium is the reason I've had fevers and night sweats and joint and body aches for the better part of a year and a half. It's the reason that I have had zero remission after all of my IV antibiotic and steroid treatments throughout the year. It's probably why my lung function and energy levels are continuing to decline. We found the reason why I can hardly move any more and why I'm getting worse-lots of infection. Most of which has not been getting treated properly for and it sucks.

Treatment for the mycobacterium is long and arduous and unfortunately not always successful. Antibiotic treatment can last months and months and months with many side effects. The rough plan as of yesterday is to fly to Denver, be admitted to the hospital, begin treating the pseudomonas infections, attempt to once-and-for-all tackle my gastroparesis issue and then if the pseudomonas begins to lighten up, begin the road to treat the mycobacterium. Rough plan. :)

I am going to be flying to Colorado in the next week and a half. All I can think about is being away from Eric and Hattie. The road ahead is scary and is likely to come with much difficulty, unfortunately and this keeps me awake at night. I wish so badly that things begin to turn around in Denver because our family needs it to, more than I can bare to say.

To all of our Warriors out there: the road ahead is going to be messy but I need you to know how much you all continue to move us to positive places. We thank you dearly for that. I love you guys greatly.

Messed Up with Mycobacterium, LOL,
Kristen