Tuesday, November 3, 2009

CF health update

I hate this time of year! I mean it's all pretty and everything but it makes me feel all yucky.

I was so excited after my last clinic visit when I was told it was fine to just do my nebs and vest once a day. But now I've bumped myself back up to twice a day on Albuterol nebs and I'm actually getting my vest in at least 20 minutes and sometimes twice when I get my little one to take a nap, it's pretty much impossible to vest when she's awake she takes the hoses out and fights with me for the peddle thingy lol. I also got a little exercise in the other day, and hacked my brains out afterward. I guess I finally realized just how out of shape I am. Before Lily was born I was so active but now I'm lazy and soft :( But I'm feeling so much better now I'm not coughing as much and theres not a lot coming up but what is, is a lot lighter than normal so that's good and I feel great.

My sinus' are better. They've been insane but sinus rinse is a GOD SEND and so is sudafed. My sinus headache is gone YAY.

I'm pretty upset about my enzymes right now. Somehow I got switched from Pancrease 20 to Creon 20. I went to my awesome pharmacy (I love them they always get my meds together on a certain day and I don't have to wait when I come in cause it's always ready) and picked up my meds they had called my docs office for a refill on my enzymes and somehow I ended up with diff enzymes. I thought it would be the same because it's the same thing just a different brand, right? I was so wrong my poor tummy has been cramping me to death, I'm all bloated and well lets just say things aren't too pretty. I need to see if I can get them switched back but I haven't really left the house out of fear of catching H1N1 and bringing it in on Lily.

I still haven't been able to get our vaccinations. My awesome bud from the health department said she would stick one back with my name on it when they get them in but they haven't gotten anymore. I hope to get it soon though.

As for my weight loss attempt I have lost down to 146 that's 5 pounds so I guess I'm 1/4 of the way there. I'm trying to go about it healthy and smart. Last time I freaked about my weight I was stupid and went of this crazy diet where I only ate like one time a day and it was pretty much nothing. I lost way more weight then I meant to and I got so sick. I was shooting for 120 (I feel like a twig at 120 as well) and ended up at 116 and I felt like a stick and could not breathe. My pfts dropped like 40% and it's only by the grace of God that I didn't stay there that I was able to pull myself out of that. I'm healthy now and I wanna stay there even if that means I have to keep this huge butt on me.

I've decided to try to get myself back in top shape. I'm doing treatments religiously and I'm gonna try to workout at the very least 3 times a week. I was at 90% before my pregnancy in 08 since then life as a mother is different and i have had no time for me, but since my daughter is bigger now some things are now easier so I have refused to accept 80 as my new baseline. I was at 80 with one treatment and no exercise at all so I'm hoping to try and get back to 90 if I'm not there in December at my next clinic visit I will accept it and I guess I'll just work hard to keep myself there.

I need to live a long time and take care of my baby girl. The first clinic visit after I gave birth to Lily I was all depressed (maybe it's because I had postpartum deppression) and said I wouldn't live to see my baby graduate high school because cf is death sentence and I'd be lucky to live to the 37 years that most cfers live to. I know this doctor felt bad for me and I'm sure he didn't actually mean it but he said "you could live to be 80 it's up to you and cf doesn't have to dictate your life". He also told me I was doing better than 90% of his patients. At the time this went in one ear and out the other. But in the past months after I got semi back to myself again I realized he was right. I don't have to die young. Yes cf is here and makes life challenging and maybe I won't live to 80 but I realized cf sucks yes, but my God is way bigger than cf. It's up to him and not some dumb mutation when and where my life will end. Yes taking care of myself makes life easier and keeping these lungs healthy keeps me from waiting for a transplant but ultimately my life is in GOD's hands. So I'm shooting for 80 years, some of you may think I'm absolutely crazy for saying that since I have a terminal illness but have a little faith people. Besides I know a 60 year old that lives here that has cf. It's true he's had it pretty mild he was diagnosed in his 40's! But that gives me hope that 37 isn't the longest I can possibly hope to live. So I'm taking care of me and my family and trusting God.

This post is WAY longer than I meant for it to be. I just meant to complain about my enzymes and it went somewhere completely different. I have so much to say I just have a hard time getting it out there lol

Well I hope everyone is doing great.
God Bless

Misha and Lil


  1. You don't sound crazy. I hope you make it to 80...and then some!!! :) I'll be working hard towards a cure for CF once I get into grad school - I'm going for clinical research, specializing in CF research. A cure WILL happen and hopefully in our lifetime!

  2. I found the link to your blog on Cindy's 'Calling all CF Bloggers' post.
    I thought this was VERY inspiring. Thank you.
    And your daughter is BEAUTIFUL!

  3. Hmm... amen to EVERYTHING you just said! Including the enzymes. There has been a bunch of enzyme drama this hospitalization since apparently Creon changed all their strengths???? Anyway, its taken me a WEEK to get enzymes up from the pharmacy downstairs. Ridiculous!

  4. Oh and by the way - I am jealous that you could get away with only doing one neb a day!!! How did you sleep at night?

  5. Lol I was amazed that I could get by with one. But this time of year is different for me :( But I slept great I would do my one neb before bed the only thing that really kept me up was Lily. Oh well...but I'm back to 2 for now anyway

  6. I saw that you were a follower of my blog so I hopped over. I don't know if you know how encouraging it is to see a woman with CF be healthy after having a child! Thanks for following and I'll be sure to keep reading your blog - it's so interesting!