Disappointments...

I was taught the principles of the "American Dream" early in life, and I believed in the theory whole-heartedly. If you work hard and do the right thing, you will reap rewards. So I worked hard and did the right thing. Over the past couple of years, and especially in the past month, I have learned that this doesn't apply to Cystic Fibrosis. Sure, being compliant and practicing self-care can, at times, have a positive impact on health outcomes. However, you can also follow all of the rules and your disease can still progress.

I finished my IV's a nearly two weeks ago after having an allergic reaction. I thought I felt better, so the choice was made that I could end this course of IV's after 2 weeks. The first disappoint was that my PFT's did not improve, not even by one percentage point. OK, I can deal with this. Frustrating, yes...but I know this isn't uncommon. I was really hoping, though, that all of my hard work would have paid off in a tangible way. I wanted to see improvement, instead of only feeling it. I wanted hard proof. It wasn't to be had during this appointment. So I rested on the fact that I felt good. My cough diminished and I was no longer short of breathe when climbing a flight of stairs. I also learned a lesson, that I will always go the extra mile and do a third week of IV's.

Much to my dismay, I started getting junky again within 6 days. By this last Wednesday I was having a full-on lung exacerbation. I felt worse than I felt before starting the IV's. For about 4 days I tried to convince myself that this was a normal part of the IV process...feeling worse before feeling better. However, each day was worse than the one before. This past Wednesday I finally called my nurse who said that it sounds like some residual infection was left behind and was rearing it's ugly head again. Disappointment is not a strong enough word to describe how I felt when my lungs decided to fail me so soon after working so hard to improve them. I did everything right, I did what I was told, and I didn't reap any reward...

Back on antibiotics I went. This time just oral Doxycycline. No big deal, really. It's only a bummer, because Doxy and I don't agree when sun exposure is involved. We have a little family vacation planned for this upcoming week, along with a bigger family vacation in 3 weeks. All involve lots of fun in the sun. I bought SPF 100 and am going to keep my fingers crossed. I am already improving vastly. Doxy always works wonders on my lungs. I just always decline right after I go off. Maybe this time the combination of IV's and Doxy will do the trick. I'm hopeful...

Mycobacterium is my next battle to fight. My sample was sent to Murray in Texas last week. I guess my local hospital had to watch the sample for the first 3 weeks to ensure that nothing else grew. The good news is that other than the mycobacterium and staph, it was clear. Now Murray is going to watch the growth for the next 3 weeks, he's figure out my strain and come up with a treatment plan. The treatment plan will likely include 3 antibiotics for about a year. I've heard of it taking both shorter and much longer periods of time for people to eradicate this bug, so I guess we'll see.

This mycobacterium has been another huge disappointment. It may be what has been causing this decline over the past couple years. I am obsessing about how I got it. I travel so much for work, maybe I got it on a plane. I have worked for years with cancer patients, maybe I got it from one of them. That leads to obsessing about how to prevent future exposure to deadly bugs. Should I wear gloves and a mask to clinic visits? Should I start wearing a mask on all of my flights? These thoughts have been floating around and around in my head for days.

The mycobacterium also acted as a reality-check. What jumped off of the page at me when I researched this bug is that only people who are immunocompromised contract it. I guess this means I'm immunocompromised. I mean, I knew I was immunocompromised...but I guess I really KNOW I'm immunocompromised now. There's no ignoring it now. It's frustrating that I can do everything right and I won't be able to change the fact that I have a genetic abnormality that will continue to make me sick. Then, when I get sick, I will likely always need strong medications to get to some level of well. Until I don't...

I guess I would say that June has been disappointing. Not unbearable...just frustrating.