Saturday, August 27, 2016

CF In Real Life

*Raw feelings ahead:

A couple weeks ago, I had my routine clinic appointment in Chicago. The appointment previous, at the end of April, was probably one of my best appointments I've had in many, many years. My appointment a couple weeks ago was not even close. 

I went in expecting to be in the high 80s, maybe still 90, because I was just beginning Cayston which always makes me cough a bit more when I start it. I knew my weight would be up a couple pounds because I hadn't really exercised all summer and I could tell things weren't fitting the same. 

First came the scale, and boy was I surprised - 132.4lbs! What?! That's more than I ever weighed, even when I was pregnant with Anna. No wonder my clothes weren't fitting...Then came vitals, which were fine. I felt like I had to wait forever to get my PFTs done. I saw the nurse first, quickly, who I told that I was feeling really well all summer and expected some good numbers. She mentioned that my insurance was being picky about me getting an Afflo-Vest because they wanted proof that what I have now isn't working, so she was going to "add a note to the bottom of my papers today" saying my numbers weren't the best and recommend that I get it. We both giggled a bit at being rebels, haha, but she knew I'd been asking for one for a long time, so she was trying to help me out.

Then finally the PFT machine comes rolling in. I stand, plug my nose with my fingers, close my eyes and focus on my breathing. I give my biggest, best puff of air and blow as long as I can. When she tells me to take a deep breath in, I do, take the mouth piece out and stare at the screen - FEV1: 81%. That can't be right. So I cough a few times, give them a sputum sample, make sure my airways are nice a clear for another test because that score just cannot be right. I tried even harder on the next one and ended up with the same sad number, I was so confused! What was worrying me was that I felt fine. You'd think if your lung function took an 11% hit, you'd feel pretty crappy, but I didn't feel a thing. I just got done telling the nurse how I'd been feeling great all summer. The RT had me do another test, but she hit the button at the end too soon, so that one wasn't correct. She asked me to do one more. I coughed out everything I could before doing it, to make sure nothing got in my way....same, if not a little lower (can't remember for sure) because I was exhausted. 

I wanted to cry. How could my lung function go down so much in so little time without me realizing it?? I didn't know what to say. I had no idea what my doctor was going to say or how she was going to react. Thankfully, she was so level-headed and calm. I told her how I just started my Cayston and wondered if that was it. Then I told her about my classroom...

See, my school doesn't have air conditioning. It also has carpet everywhere. Over the summer, our custodian cleans all the carpets in the building. He uses as many fans as he can find to try to help the carpets dry quicker, but between the heat, humidity and moisture, almost always some mold grows in some or all of the classrooms. This summer, it happened to be only in my room, and it was EVERYWHERE. I discovered it when I went into school over the summer to drop off a few things in my classroom. It was covering all of my bulletin boards (which I covered in fabric last summer), on my books, shelves, desks, etc. I took pictures to show my principal and got out of there. I was so frustrated! I couldn't work in that environment! 
After talking with Tim, we decided that it needed to be taken care of, and no one s really doing anything about it. So Tim bought me a respirator and we sent Anna to Grandma's one day the next week. Wearing my respirator, I tore down all ten of my bulletin boards' fabric and borders and threw them away. Apparently wearing a respirator finally got the custodians attention and he called his boss to try to help me out. He got me a new dehumidifier for my room and used an entire gallon of mold killer to spray every surface in my classroom (I even asked him to spray my books). He decided to keep the windows shut, shades drawn, and lights on for days to make sure the mold didn't grow back. 
Fast forward to the next week no there was no sign of mold growing back, so I went back in for an entire day in the heat and redid all ten of my bulletin boards with the help of one of my teacher friends. 

This was two days before my clinic appointment. When I told my doctor about all of this, she said, "Don't ever do that again." I felt awful, but I knew no one else was going to do it for me. She said that even with a respirator, it still wasn't good for me to be in there. We wondered together if that could have had such an impact on my lungs. It was obviously airborne because the bulletin boards were never wet, so the mold had to come from the air. My doctor said she'd check my sputum culture for mold, told me to increase my treatments as much as possible before school started in a few days, and talked about writing a letter to get me an air conditioner in my classroom. That was it. She wasn't putting me on antibiotics or anything extra because I was already on Cayston and she said my graph looked proportional despite my numbers being low. It was kind of a mystery. She wanted to see me back sooner than three months to see if my numbers stayed low, or if it was just a fluke.

That whole night and the next day I was so, so defeated. I was confused. Should I go back to work? Is it worth risking my health to do my job? I'm too young to stop working! School starts in three days, how am I going to find another job in an air conditioned building? What do I tell my boss? I had no idea what to do or if I should even go back in my school. My doctor and I texted back and forth the next couple days, and she agreed to write a letter to my district to try to get A/C installed in my classroom.

That brings us to today... Yesterday was the eighth day of school and all of my ADA paperwork has been submitted to HR to try to get me an A/C in my classroom. Unfortunately being in an older school building, I hear the eletrical isn't enough to hold one, but we'll see. I have a feeling they'll make their decision by October when it's not relavant anymore....or try to send me to another building which I will not do. 
I've been feeling okay the last couple weeks. Not the best, but not awful. It sucks working in the heat, but we're all in the same boat at my school, so I feel bad complaining. I absolutely HATE using my CF as a crutch/excuse. I hated filling out ADA (Americans with Disabilities Act) paperwork. CF is not a disability. I hated writing that I have limitations because of CF. Unfortunately, I have to realize that I do have limitations. I can't subject these lungs to the heat and humidity if I want to keep them in tip top shape. I have to keep myself healthy to be the best teacher, mom, and wife that I want to be.

We'll see what the district decides. ***Oh, and my culture did NOT show any mold in my lungs, so that's good. Even though I've been breathing it in, its not not making a new home in my sticky mucus-filled lungs! I'm almost at the end of my Cayston cycle and still feeling just okay, so I might be asking for some Cipro in a couple weeks to give me that extra boost. I'm also planning on joining a ten-week running club with a friend, so that should really help keep these airbags moving. 

I'll keep you all posted. High-five for you for reading all the way til the end... :-)
PS - My class has only 14 students this year. It. Is. Amazing!

1 comment:

  1. I'm so sorry, that's so upseting. In the last year I dropped from 57 ish to 49... 49 is my new baseline. and frustrating being below 50. I am currently writing about my clinic from this Tuesday. Hope you get an AC unit asap and it was just a fluke!!! If teaching is affecting it, do what you need to. Nobody can tell you what you should or should not do. But keep at your numbers, hopefully they go back up!!! If ever wanna vent, I'm here.