May is Cystic Fibrosis Awareness Month

For those of you who are new to my blog, I have a genetic disease called cystic fibrosis(CF). May just so happens to be CF awareness month so I’m going to make a post about it.

Last year I did a post everyday, but with a lack of ideas for posts over the course of 31 days, I won’t be doing that.

I’m going to be sharing my journey with CF.

I was diagnosed at 3 months, along with my twin sister, Brianna. She had a blockage which led us to be tested for cf using a sweat test.

They implemented in 2010 that every newborn is to be tested. Well I wasn’t born in 2010, so it was a good thing my sister had a blockage or else we wouldn’t have been diagnosed so young.

So I grew up doing vest treatments twice a day, taking enzymes before every meal, along with nebulizers and other medication. My parents have said that there was a couple close calls of us being admitted when we were younger, but that held out until I was the ripe age of 12.

My sister was admitted through the ER in the beginning of 2017. That was the first time either of us had been admitted. She was in for 1 week, and got 2 weeks at home with antibiotics through a picc line.

It was only half through the year when I started getting admitted. It soon became a routine. Every three months, picc, one to two weeks at a time.

img_2463

Brianna and I spent new years of 2017 in the hospital. It wasn’t so bad. Our nurse gave us some glow sticks and we were able to watch fireworks from the window. There was cable on our rooms tvs so we were able to watch the ball drop and the performances.
Two admissions ago I had a blood clot from my picc line. I went to the ER the night before thanksgiving and got the surgery to replace it on thanksgiving. They had tried tpa twice and it didnt work. The last admission I also got a blood clot, but the tpa worked.

My sister rolling around. We always binge watch the office when we are admitted. All 9 seasons.
Ive had so many ivs. My veins suck, and by the time im able to go down to OR ive had 2-3 ivs.

I still get admitted every 2-3 months. Right now i’m dealing with nausea and weight loss issues. I got a g-tube last year, but i’m not able to use it because of the nausea.

Thats all for now, for more information about CF look at cff.org.

Bye.

Advertisements

4 thoughts on “May is Cystic Fibrosis Awareness Month

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s