The Joys of having CF

The Joys of having CF

Monday, May 5, 2014

"You're one of those Patients"

That's what I was told by my doctor today. Today started out normal, I got up, did my meds, my dad rode along with me and we headed to my dr appt. I felt great. I've been feeling the best I ever have been. I got to the doctor, checked in, and that's when the mood of the day changed-and not for the better. I went upstairs for my PFT's(pulminary function test), they checked my weight. I gained a little, which is good. Then came PFT's. I usually do a total of 5 tests(5 blows). My first one is usually lower since I just started,  like around 87% and then my best is usually number 4. Works like clock work every time. Well today I had a guy who only let me do it 3 times. No more. So my first blow was 87%, typical, next one was 92%, typical and my third one was 94%, and I was told-"you're done". I was not happy. I just started getting my numbers good. 94% was my old usual like 2 years ago. The last 2 years I've been averaging 98%-99% and 3 months ago I was at 100%. So needless to say my dr is now concerned. 
He asked if I'm doing anything different and when I said no and that I feel the best I ever have it alarmed him a little. 
I'm also one of those people that can feel wonderful and have an infection and pneumonia and not even know it, that's when he said "so you're one of those patients" with a smile of course. This is only my third appt with him. I love my dr because he doesn't believe in doing unnecessary antibiotics or X-rays unless needed, so we talked and agreed that in 3 weeks I'm going to repeat PFT's, and if their up then we're not going to worry. BUT if their any lower or the same then we're going to dig deeper to make sure nothing's wrong. I appreciate though that he doesn't want to give me antibiotics for precaution because like he said, if he gives me to many now someday when I may really need them I could become resistant. So that's how my day went, but I feel really confident that I'll raise my numbers in 3 weeks. I don't want to break my good stretch of being healthy, because this upcoming August will make 2 years since I've been in the hospital. I'm so excited.
Also I'm part of a small research study with my old doctor so every time I go to the dr for the next 2 years I have to get blood drawn(which I enjoy), crazy I know. Well today there were practice lab drawers. Now I always have a rule, 3 pokes and you're done because my veins are so bad. So they nicely asked first and of course I said they could practice, they have to learn sometime, the lady tried once, and missed, then the tech tried and missed, and the tech finally did it a third time and got it. Now I have a bruise on my right arm, but blood got drawn, not really painful so all is good. 
I'm going to stop rambling now but just wanted to give you all an update. Will write soon. 

~God Bless

Sunday, May 4, 2014

In honor of CF Awareness Month

In honor of CF awareness month I thought I'd share a few photos of things us CFers sometimes go through. 






Call me crazy but somehow I enjoy getting IV's, and i enjoy having PICC lines. Thankfully I've been IV free for 21 months. I can't believe it. It's been so long since I've been this healthy. I'm so thankful. 
Also here's the link to the video I made of me getting a PICC line http://youtu.be/xOXUVqvmzYQ 
Will write soon. Tomorrow I have a doctor appt. 

~God Bless 




CF Walk-A-Thon

On Saturday, May 5th, we had are local CF Walk. Our local walk, which is fairly small, raised just over $11,000 not counting online donations. There were lots of new faces this year. Lots of little kids. There was around 100 people. It was a great turn out and it was sunny instead of the predicted rain for the day. 
It was a wonderful day of people coming together to help find a CURE for CF :) 


"Helping to add tomorrow's everyday and to make CF stand for Cure Found".

~God Bless

Visit with Grandpa

So, some of you may or may not know but my wonderful grandpa has been in the nursing home now since last summer. He had a minor stroke, and then through a chain of events was put in the nursing home. He is at our local nursing home in town, and there's some of his friends he grew up with there, but it's not the same as when he was home. See my grandparents live just a few hundred yards away. I can see there house from our house window, it's walking distance. 
I would usually see my grandpa multiple times a week, but now with him being in the nursing home which is only 10 minutes away it's harder to see him. Time gets away and before I know it, it's been weeks since I've seen him, and I don't like that at all. He's 90 years old and will be 91 in a few weeks. I am very close with my grandpa, and he is also very close with my dog, Bo. 
So today I went to see him. The sun was shining, it was just the perfect day. He was so happy to see us, as was i to see him. I love him so much, and I don't know what I'd do without him. 


My grandpa and I.

~God Bless