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We still love you and miss you. You are not forgotten.

Your Brother,
Joe

I just realized that I forgot to write this… Last Friday I had a CF Clinic appointment. This is my regular three month check up. It went really well! I did my normal Pulmonary Function Test (PFT) - I’ll go ahead and list progress from last year below:

FEV1 (main figure they look at for us)

9/21/2006 - 54%
10/13/2006 - 59%
12/1/2006 - 62%
2/23/2007 - 57%
4/6/2007 - 63%

Friday I blew a 70%!!!

The small airways have improved a lot since last year also - 39% compared to 21% last September.

I am just generally doing loads better since last year… well truthfully I feel better than I have since I was a teenager. I now recall times when I didn’t participate in things because it would be too strenuous, I just used CF as an excuse. Let me tell you - it’s no excuse! What it is an excuse for is to take better care of yourself to show other people up and find out what their excuse is to be worse off physically than you are. I now realize how bad I felt then, by feeling the way I feel now. I can’t wait to hit 100% FEV1.

Here’s my word to any CFers that neglect taking care of yourself - stop the madness and do what you need to! I don’t care if you are a teenager and have high PFTs. I don’t care if you don’t do certain things because of your condition. Physical activity is fun. It can relieve the stress of knowing what will mostly likely kill you. Not everyone gets the second chance I did - start today! Do those nebs! Take the enzymes! Eat healthy! Exercise! Please! You are worth it!

Proud Cystic-Fibrosis Foundation Doesn’t Need Your Charity

They can make fun of anything…

EDIT: This is fake news. Not real.

Six weeks ago I had gone to the CF Doc and my lung function had gotten a little worse - FEV1 was down to 57% from 62% the time that I was there before. IGE levels in my blood were really elevated that time (the 62% one) so since my lung function had decreased they took the test again (from blood) and looked for Asperilligus colonization in my sputum. Mold allergies are quite common in CF, since the moist environment of mucus makes it easy to grow and our weakened defense against lung infections make it so a lot of of can’t fight it that easy.

Today I went for the follow up from that last appointment six weeks ago. Great news - FEV1 is back up to 63% (it was 54% in September). IGE levels closer to normal. No sign of Asperilligus in my lungs. The theory my doctor gave on why my IGE levels were so high that time was that I must have been somewhere that triggered an immune response in my body close to the time blood was drawn.

I think the combination of rigorous airway clearance (with the vest), exercise, eating well, and the few medications I take are causing my body to actually fight things better without having to resort to medication. My doc agrees, and was happy to see my lower IGE levels without them having to do anything. I am noticing that the weather change and the pollen are not effecting me that much this year.

Doc advised now that it’s getting warmer to do outdoor activities - humid and salty air can actually do good for my lungs. He also suggested maybe water sports or beach activities - so maybe I’ll start surfing or just go to the beach and looking hot with my 167 pound 14% body fat self

It’s crazy how you can join an email list and end up joining a community, where you feel very saddened when someone is gone and happy over the good things. I’ve been on the Cystic-L mailing list for about six months now - I’ve gotten a lot of good information from it. There’s also the ‘getting to know’ community aspect of it. With CF it’s not like having some sort of interest that you can hang out with a bunch of people locally. The internet is great for this kind of thing…

Anyway, one of the members of the list, Carol, past away today. It was crazy when I read it because I remember reading a post from her yesterday. My prayers go out to her husband and the rest of her family.

Check out her blog that she kept for a little over a year - here.