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Monday, July 15, 2013

I'm not alone

I had a clinic appointment today that was a follow up from 3 weeks ago. Three weeks ago I had a routine clinic appointment. My FEV1 had dropped form 66% to 60%. The drop was largely due to my sons being born. I'm not saying it's their fault by any means. I had stopped exercising completely and had been struggling to get 2 treatment sets in each day. It's my own fault for not prioritizing my health as numero uno. I was put on Cipro (an antibiotic) in pill form for 3 weeks to help combat the drop in my PFT's and started a strict regiment of two treatment sets a day with 3 days of running and two days of P90X a week.

If you read my Thankful Thursday post from last week, you know that a week ago I made a dummy move and hurt myself. I fell from the rafters above a pool and landed on my right side on the concrete. I was hanging from the rafters, not standing on them, so it's not as bad as it sounds, lol. My ribs have been seriously hurting me after re injuring them mowing grass last week. At clinic today they took an x-ray. No broken ribs (I already knew that though, it doesn't hurt bad enough) and they didn't see any fractures initially. They did however see that I have a large contusion (bruise) wrapping around my ribs with a significant amount of swelling. It's funny because there is no bruising on the outside. The contusion is deep. So, I'm to go back whenever I feel I can give a solid effort at my PFT's.

My FEV1 today was 59%. No improvement from last time, but no loss either. It's obvious I couldn't give a full effort at my PFT today, so they want me to go back, hopefully in a week or two, when my ribs are back to normal. We'll go from there. I am still coughing more than normal and coughing up more than normal. It seems to be much thicker than usual as well. It's extremely frustrating that after getting back into a routine of running and working out along with regular treatments, I hurt myself and mess everything up. I can't cough good without hurting, therefore can't get mucous out, which is NOT GOOD. While it is extremely frustrating however, I'm looking forward to recouping so I can get back at kicking some CF booty again!

It wasn't all bad news today though! I didn't break anything! (bruises heal much faster than fractures or breaks) The biggest and most exciting news to me is that I have the chance to participate in Phase 3 of the clinical trials of Ivacaftor and Lumacaftor!!!! I have DDF508 CF gene mutations, which the study is focusing on, and my doctor thinks I'd be the perfect candidate. It may be difficult fitting in all the appointments that are required when participating in a clinical trial of this magnitude, but how could I pass this up! It's HUGE!!! I was so excited when he asked me about it and handed me the packet! Hopefully I get accepted to participate and double hopefully I get the "real deal" pills and no placebo! This is super exciting news and monumental in my book! I really can't express how excited I am. I'm trying to contain it until I officially get accepted to participate.

I also learned this week that I am not alone in a couple things that happen to me concerning my CF. I was reading an article written about a buddy of mine who has CF and he mentioned a couple things that happen to him. I was surprised to hear that I am not the only one, lol. For example:

1. I am not the only one that coordinates eating with treatments and working out due to risk of throwing up everything I eat. I figured this happened to more people than just me, but I had never heard anyone mention coordinating eating with treatments and or exercising. Oh and showering too. If I eat a meal and then go do my vest and treatments, I am going to throw up. I cough hard. It's the only way to get those nasty secretions out. Cough, and cough hard! It's inevitable that I will gag a lot from coughing so hard, and if there's anything in my stomach it's coming out. So I do my treatments, exercise and shower on a fairly empty stomach, because throwing up is no fun. It's also a waste if you think about it. All that good food going down the drain. Plus you have to eat again after. :)

2. Secondly, is that I'm not the only one that coughs a lot in the shower. When I take showers it's like my body flips on the "Get the mucous out" switch. I cough A LOT in the shower and cough up a lot of junk! Again, I thought I was alone in this phenomenon. I still have yet to really explain it. My thought is that the hot water combined with the added humidity that builds in the shower moistens up the airways and mucous, causing it to thin out and move better. That's my official educated guess. Whatever the reason though I'm glad it works, and boy, oh, boy does it work! People have been at our house before when I was taking a shower that had never been introduced to a CFer and how we cough to get mucous out. Monica said they asked several times if I was ok. :)

Overall it was a good day. Plus I still get to come home to an amazing wife and two awesome boys!!! One of which learned how to really suck his thumb today and has not stopped trying and succeeding all day. We're in trouble. Anybody have any remedies besides hot sauce? ;)

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