Above: where I wish I was. Can’t wait to go back this summer.
Yesterday I had my quarterly CF clinic appointment, which I was looking forward to particularly if only for reassurance that I’m doing ok in light of the eventful past month of out-of-the blue hemoptysis. My mom gratefully accompanied me, which always makes the long, early morning, trafficky drive better.
Weight is down a smidge. My doctor didn’t seem too concerned since I’ve been exercising and not actively trying to gain weight (which I seem to be able to do when I put my mind to it). I think an additional 5 lbs would be good for me, so I’m going to work on eating more the next month or so.
My PFTs were great, which surprised me. I figured after two episodes of hemoptysis, they’d decrease. They did not and I bet it’s because I’m coming off of two rounds of oral antibiotics and my on month of TOBI.
I mentioned my joint aches and low fever last week and coupled with the two bleeding episodes and general chronic changes from “baseline” over the last 2 years and “creative” new bacteria I’ve cultured over the last 6-12 months, my doctor wanted to do another course of two types of oral antibiotics (Bactrim for staph and levaquin for sphingomonas-something-weird) and get a chest CT scan to see if there’s anything acute going on in my lungs.
(Side Note: How do you pinpoint “baseline” anyway? How do you determine change from it? The change has been so gradual for me—with little to no change in lung function—that I can’t pinpoint when it happened…which I guess makes it like economics? You can only officially know there was a recession after it’s over? Anyway, we determined that mine is the difference in OCCASIONALLY coughing up green sputum vs. ALWAYS…and I’ve been in the “always” state for 2+ years.)
Anyway, as seen in my two chest X-rays from my ER visits, the CT scan showed that my lungs are clear with no localized acute site of infection. One might say “healthy as a horse” except there’s more structural things that can be seen on CT scans and it did reveal areas of scarring and bronchiectasis (airway remodeling so that the lung tissue is no longer as stretchy like a balloon) in my upper lobes, which is consistent with CF.
Ug. I know I have CF but hate concrete reminders like this. I like to live in a dream world where I have lots of self-confidence that I’m winning my body’s war against CF. Most tests say so: my PFTs are still over 100% predicted, I don’t culture pseudomonas or other dangerous, drug-resistant bacteria, I’m vigilant with all my medications/therapies and have been so for the last 15 years (save occasional skipped nebulizers/vest in college about 10% of the time, but that doesn’t really tarnish my rock star track record). I’m active, working full time, and not physically constrained by my lungs.
But CF is still here. Still silently, secretly digging it’s teeth into my body in an irreversible way. And maybe concrete evidence does help emotionally getting out of the denial phase for some diseases, but with a lifelong battle against CF, I think it does more harm than good to my attitude. I’m trying not to let it get to me and it doesn’t change my goals/outlook/prognosis, but it does make me feel vulnerable.
I wonder how many others feel this way. If I was going to guess based on the handful of people with CF I’ve “met” online through tumblr or twitter and from the numerous personal CF blogs I’ve read (I’m usually a silent lurker), the majority tend to experience the physical effects of the disease a decade or more earlier than me. And if I were 15 years old hearing/seeing concrete evidence that my disease is present despite my efforts, I certainly would have different feelings based on my maturity and knowledge at that age. I might even feel indifferent and tack no meaning to the phrase “regions of scarring and bronchiectasis” that are “consistent with patient’s history of cystic fibrosis” which is a little bit of an emotional blow to me at age 30.
I am so very grateful and acknowledge my good fortune in being such a healthy CF patient still at my age. It’s taken a lot of effort but I know there’s a lot of luck in play as well and hope others with CF who might read this don’t take my seemingly-minor complaints as more than acknowledgment that I’m aware of the progression of my disease. While time-consuming, I know my CF care regimen is still a light load compared to some or maybe most my age.
Anyway, I’m not sure where I’m going with this post. It went from “the facts” to “my feelings” pretty quickly and if anyone has made it to the end, I leave you with this final fun fact: levaquin can cause a false-positive urine test for opiates, so I guess it’s a good thing I’m not an aspiring Olympian. :-)
This post has 1 note and tag: # cystic fibrosis .
