Persistance

Nine weeks ago today I began this round of IV antibiotics, also known as a "cleanout." At the beginning, I was feeling awful/having a hard time breathing and spent most of the trek slipping backward instead of making progress. 

It wasn't until last week's CF clinic appointment that we finally saw signs of forward motion. My PFTs stopping decreasing and climbed back up a few percentage points, I gained 2 lbs. instead of continuing to lose weight, and my symptoms were slowly improving; though I had rattles with each breath, I could breathe again (yay!) My doc and I both felt optimistic the new med combination was helping. 

After all that time, I thought I'd be popping a bottle of champagne to celebrate, but the mood in the exam room was less celebratory and more cautious optimism. My doc subtly warned me that although we'd give the antibiotics one more week to work their magic, we'll then have to stop at that point as the risks of "superbugs" and even more drug resistance outweighs the benefits. 

She subtly prepared me that at the conclusion of this cleanout I may not feel as well as I'd hoped or have my PFTs as high as they were when I began and that I may need IV antibiotics again sooner than my usual 5 months. I left feeling happy, yet numb. 

I'm an emotional writer. I have to feel something in order for the words to flow, and I wasn't feeling much of anything, which is why it's taken me a while to update my blog. It sort of felt like I was on autopilot going through the motions.

Now, there are lots of feelings swirling and twirling inside me. Despite my gains last week, I've had a decent amount of bleeding from my lungs (hemoptysis) for 3 consecutive days -- despite 9 weeks of IV antibiotics and taking a drug to help clot the bleeding. It's as though a switch was flipped and I'm right back where I was 2 weeks ago, not sleeping because of my cough and struggling to breathe. Some of my blood tests also continue to climb through the roof, which we can't quite figure out.

I feel frustrated, apprehensive, and utterly over it. I don't know what (if anything) this will mean. We don't know why this is happening but last week my doc referenced this as a "severe exacerbation" (an increase in the severity of a disease or its symptoms.) Allow me to take a moment to remind you that this all began as a common respiratory virus back in September! 

This is why I beg you: if we're going to be hanging out and you have a cold/bug, etc. please let me know ahead of time so I can make a conscious decision whether or not to take that risk. Most of my friends and family are already good about this, but I think it's worth repeating.

While I'm not sure what the solution is or what the next few weeks may hold, I'm really hoping they pull my line as scheduled on Friday because I (and my bod) could really use a break; a break from blood draws twice a week, Boston appts. once a week, and constantly thinking about the timing of meds, treatments, etc. 

A cleanout this long, and the hemoptysis despite it are unchartered territory for me. I recognize how much worse things could be and give gratitude where it's due. I will continue to put one foot in front of the other, keep the faith that my team and I will make the best decisions we can, and hold steadfast that one month from now this will all be a distant memory; that I'll be feeling better, back to exercising and focusing my energy on things I'm passionate about. 

Happy Martin Luther King, Jr. Day, a leader I continuously learn from and admire in so many ways.