August 30, 2016

Clinic Visit, New Meds, and a Pity Party

I know they're for everyone's safety, but
I really hate these masks.
I had a clinic visit yesterday and had intended to write a full post about what is involved in them. Turns out my visit was a pretty simple one. I didn't have to do most of the normal tests or see most of the usual people, they didn't even to a blood draw. Way to ruin my intended blog post guys!

However, one test that never gets skipped is the PFT (pulmonary function test). This measures the capacity of my lungs to see disease progression. Growing up my FEV1 was always about 115%, but over the course of the last several years it has gone steadily down to about 83%. My functions have been stable for the last 18 months, which is good since I don't want to see the decrease keep going. But I had my hopes up (probably a little too much) that between running and doing my vest & hypertonic saline nebulizer on a consistent basis I would see an increase. I asked my doctor if it's even possible to see an increase or if this is just going to be my new baseline. We decided to try adding Pulmozyne to my routine to see if that will help bump my numbers up.

Pulmozyme is one of those medicines that most CFers get put on, kind of like digestive enzymes,but I've never needed it since my lungs were so good. I'm pretty bummed that I have to do this and that everything I've been trying isn't helping. I can be pretty competitive and controlling, so I'm feeling a little defeated that I need to start this new med. Not to mention the fact that I now have to get up about half an hour earlier in the morning to do it since it's a nebulized drug. I'm still waiting on insurance/specialty pharmacy to get it, but hopefully it will help and I'll see a rise in my number next time.





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