Wednesday, March 30, 2016

Wearing a Mask to Clinic

Clinic  Numbers, my mask, and updates:

First of all, since my last post A LOT has happened. My last post was about the Peoria Chapter Cystic Fibrosis Foundation Annual Meeting & Awards Night. Make sure to scroll down & read that post. Not only did I receive an award,but was honored to be the guest speaker, BUT I also learned some facts (that I had never heard of before) about the CF Foundation!

Secondly, Last week I had the privilege to speak at a local High School assembly about my life with CF and thank the students for their fundraising efforts. The Illinois Valley Central High School raised over $17,000 in 45 minutes for the CFF! Alyssa Paldo from WMBD News covered the event. If you want to check out the video she posted on Facebook (hear about the students did it and even see me on the news, go HERE). Way to go Grey ghosts! 

Okay, now to catch you up about my clinic and tell you about the mask I wore! I drove from my place an hour to my parent's place. Where my sister drove us to my Clinic (another 3 hours). She was home for Easter. We stopped for a quick lunch and headed to Doc's. I did some nebulizer meds in the car on the way. It was not just a regular clinic, it was my annual checking of the numbers clinic. I should hear back on diabetes, liver, kidney, vitamins, etc soon. I always dread talking the elevator up. Once last year I ran into another CF patient on the elevator (which is super small shared air), meaning we can catch those "superbugs" from each other.

I use sanitizer on my hands after touching doors, buttons, etc at Clinic. But I decided to do more to keep my lungs safe and healthy (well, as healthy as they are...) I need to wear a mask more. Once a patient arrives a Clinic Doc has them put on a face mask right away. However, we don't get them until we are already in the lobby where there are other CFers, and that elevator mishap made me realize that I need to be wearing one before I enter the building.

I started reading about different masks. I followed the company Vogmask, really intrigued by how many styles and the selection they had. While Vogmask is geared towards fixing problems for pollution, I noticed more CF patients starting to wear them. They had filters built into them, and exhale valves, they seemed to fit more snug too. Which allows less germs or particles to get to your nose and mouth.  I decided I wanted to try them out for different functions. I contacted Vogmask and they sent me some masks in the mail to try. (for example one exhale valve vs two, etc.

So far this is what I think: the majority of masks I have found (including quite a few medical masks) are N95 and my Vogmask is N99 is amazing. N95 means it blocks 95% of particles that are .3 microns or larger. The Vogmask is N99, so it blocks even more than most standard masks I have used in the past! To check out all the features and products they offer click HERE!

All the features I like:

  • 99 filter rate
  • exhale valve (which it is still warm in the mask, but not nearly as much). 
  • some have 2 exhale valves 
  • it fits very snuggly over nose and pretty snug under my chin. I have a very square chin, so I was impressed at how well it fits.
  • They have multiple sizes (not one size fits all)
  • it is heavier duty than the paper material masks, but isn't heavy feeling while wearing.
  • It comes in a variety of colors and options. Organic, etc.
  • It is washable (I'd recommend a non-CF patient washing and handling it) after it has been exposed to other patients, etc
So far I haven't had many complaints. Except one. My ears are not strong, and the weight of the string that goes around the ear, curls my ear over a bit at the top. So when I take the mask off after a prolonged time of wearing it, they are sore.

But otherwise, so far, I LOVE THEM!

I haven't had a chance to use it jogging in the cold (since it has been so warm). As I use it more I will post more about the product. Check back to this post for links to future posts (all vogmasks posts will have links to each other too).  I also have a fun idea I will posting to my YouTube channel in a couple weeks.

So about clinic... Well, to sum up how clinic went... ehhhh. Not too great. My lung function is down from 55% to 42% and my weight is down from 107 to 103. Doc thinks my psudeomonas is flaring up and causing the decrease. His plan: switch to Tobi (even though not through Cayston cycle) and do Colistin on top of my regular 9 nebulizers. Also, work on trying to get weight up.

Only snag: I'm having the same issue with my insurance again. I have paid my deductible and out of pocket maximum, but they say I owe the whole amount.  When I call they agree, it should be covered and don't know why it's coming up that way... Read about the fiasco I had last time, right here. It took weeks to fix it, but this time I don't have weeks. My eye surgery is April 7th.. So Doc said we will have to figure out another plan if I don't get it by Friday!

Also, I've started posting short under 5 minute vlogs on YouTube, please subscribe and follow my videos. I have my public speaking on there too, along with informational videos too! Click here to go to my YouTube!

I'm soooo glad my sister went with me to my appointment. It's a long day and I tend to not being able to make the trip in just one day and stay over at my parents. Plus, she always is fun to hang out with. We sang to musicals, got some starbucks, and visited a favorite Pop & Candy shop called "RocketFizz".

Yum, I tried Cucumber Soda this time!

But, I will keep you all updated on my health AND I have some exciting news about our Princeton CF Great Strides Walk to share soon!

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  1. I just ordered vogmask, I hope it fits me correctly as the size chart showed me being smaller than small..I measured because I am really small even though my weight is between 60 something between 70 something now. I don't have cf but I have a serious auto immune disease and other things including epilepsy but I am already immuno compromised by meds and now my Dr. wants me on anti rejection drug 😕 Well....supposed to get IVIG tomorrow but we are snowbound.

    1. I hope you love the Mask. They only negative I found is after wearing for extended periods of time that my ears are a little sore. Otherwise, I love mine. Auto-immune diseases are not fun, lots of work. Hope you are doing well. Take care!