The good, the bad, the greatful

Ok, it has been way to long since I have last wrote on here.

Life has been crazy for this cfer. My health has been doing pretty great considering. I got really sick in September of last year; I lost 10 pounds in two weeks. I got a lot of comments like Wow I wish I could do that… Yeah well I wish I couldn’t do that…

As everyone knows I started Kalydeco about a 1 ½ ago. I have never felt better I am so thankful and not a day goes by that I am not grateful for this new lease on life.  I am however going through some situations that I have never had to deal with before.

First my weight…I can no longer eat whatever I want…No more burgers for breakfast. I went from 112 when I started K to 160 in 6months… yup that was a shock… I have been working out daily and eating a healthy lower fat diet (I still have my 15-20gm of fat twice a day) However with the weight came an increase in energy and more exercising has kept my lung function up. I still lose the weight very quickly when sick as I mentioned above. I have not let myself go to 160 again but make sure I have some weight in case I fall ill.

Second… I seem to have lost my corpse bride complexion. Yup the green zombie hugh is gone. I have actually been asked if I was pregnant because of my new healthy glow…lol…

Then there is my posture. I no longer need to slouch with my shoulders up to breath. I have also noticed that the hollow in my throat is not sucked in anymore. My clubbing is decreasing slowly still and I am starting to get my smell back. I could not smell anything a year ago and yet now I get faint smells like perfumes, fruits, and coffee mmmmmmm

The only scary thing that has happened is that my mind has blocked what it felt like to not be able to breathe. I think back to 1year ago when I was being evaluated for a transplant. I remember how scary it was and I remember the gasping and all the problems I faced like not being able to walk from my basement without coughing… The puking when I couldn’t stop coughing… I know I don’t ever want to go back to that… however the actual feeling???? I guess it is because your body blocks out the pain. The only thing I am sure of is that I will work my butt off and never ever get complacent with my lungs. I know that I still have a lot of scar tissue and still have 5 or more infections a year that need antibiotics.. I feel amazing and I am trying to live one day at a time.

Just keep swimming…Just keep swimming..

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2 thoughts on “The good, the bad, the greatful

  1. Thank you so much for posting. I’m really happy (no exuberant) about the new medicine and it’s success. That you now have weight and energy and a healthy glow to your skin. That is incredible… Reading your post makes me know you a little more.. I already knew that you were amazing. Now your just amaziner..<3

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