My Melmoirs

Pinch me, I still can't believe this is really happening. Unfortunately the oral antibiotics aren't working and I'll be checking into hotel a la Brigham on Monday. Less than one month after ending IV antibiotics I'll be starting another round. This, my friends, is a first for me. Usually I am able to go 5-6 months between IV antibiotic courses, never have I ever done 2 rounds so closely together. And normally the team doesn't like doing another round so soon because it can increase drug resistance except...well...my lungs are in pretty rough shape and nothing else is working. You may think that I've done so many rounds of IV antibiotics that this should be a walk in the park by now, but it's surprisingly getting harder the older I get. These antibiotics come with a lot of side effects that affect other systems in the body; side effects that kinda suck. The past few years my body has been reacting to them differently than ever before (hence the bad alle...

After stopping IV antibiotics 2 weeks ago, it only took me 7 days to catch a gnarly cold from my little buddy that planted itself in my lungs and wreaked complete havoc. SEVEN DAYS! Yesterday   I found myself back in CF clinic for a "sick visit." My PFTs had dropped almost 10% in 2 weeks and my lungs were chalk-full of crackles and wheezes. I've also lost my voice from coughing so much. So now I'm on 3 antibiotics (2 oral + 1 inhaled) and we're crossing our fingers and toes they work. This also means that my study re-entranced date has been pushed back an entire month, which puts me in the first week of March. It's disappointing for sure, but I realize it's out of my control and I know that I gave staying healthy my best shot. As I often say, it is what it is.  I am happy to report that Myles rebounded on his own and is feeling much better.  He's lucky he's so cute ;)

Good news: after one week the new med was working and I had finally started to turn the proverbial corner. It got me moving in the right direction, but I knew that one more week of it would have me feeling a lot more like myself. I've also found my way back to zen and am doing much better mentally...phew! When I do IV antibiotics at home (as opposed to in the hospital) I have to go into CF clinic once a week so the team can keep a close eye on things. At this week's appointment the team had initially agreed that one more week would be beneficial...that is until they discovered I was having a bad allergic reaction to the new med. Darn it! It was a reaction that could go from bad to worse real quick, so I had no choice but to discontinue the meds and pull out my IV line. Since it was just Myles and myself he listened intently to the whole conversation and shared in my disappointment, which quickly prompted me to turn things around and focus on the positive: I have made some ...

Myles gives 2015 two thumbs up A new year is here again and other chapter closed. Am I where I thought I'd be? Not at all. Am I still confident that I am going to rock 2016? You betcha! Six weeks since I began feeling lousy and three weeks of IV antibiotics later, I thought I'd be finished; entering 2016 on healthy feet and rearing to go. The reality is that three weeks in I'm not feeling any better than I did when I began. Bummer indeed. Unfortunately the new cocktail was no match for life's stressors and the little bugs holding residence in my lungs...apparently they're partying like it's 1999 in there. The good news is that my PFTs have crept back up a little bit so the meds are doing something , I am just desperately yearning to actually start feeling better. So as of yesterday I stopped one of my IV meds and started a [different] new one...again. Physical illness aside, life is good at throwing us curve balls and challenging us mind, body and ...