Day 5- Port flush & "get out of the house" day!

First of all, I would like to apologize in advance for any spelling, grammar, or punctuation mistakes. I am doing this from my iPod, and not my computer.

Today I took off work to go to Ft. Smith to flush my medi-port. I'm sure that the people who are associated with CF know what this is. For those that aren't, it's a device under the skin that is attached to a line (like a catheter) and is run through one of the major veins in the neck/chest. It's almost like a permanent IV, but there doesn't have to be a needle in there all the time. Anyway, I had to have it flushed with saline and heparin so it wouldn't clot and be clogged. It has been a month today since I got out of the hospital and last had it done. I do it every month to keep it in tip-top shape! I am a stickler for routine port flushes. There is NO WAY that I will let it "go bad" because of something that I am responsible for. I didn't want this one, and I sure as heck don't want another one- and that is why port flushes are so important to me. I LOVE my port now, and probably think it was one of the best decisions that was made!!

Whew, sorry getting off track. Anyhow, I went to bed at around 10ish or so last night (after sleeping almost all day yesterday) and slept all night until 6:30 this morning. I started a treatment, and got almost halfway through before I started coughing. And I almost had to make myself cough. That's not "normal" for me because I usually wake up, sit up, and before I get my meds out of the fridge, I'm already coughing my head off. Today, I (big cough) (big cough) (big cough) (smaller cough) (smaller cough) spit. Done. It was easier to get out coughing wise, it was easier to spit out thickness wise. Well, it was just easier. I wasn't out of breath afterwards, either. After I finished, I ate and got dressed to leave. Then, I realized- "I actually feel like fixing and straightening my hair". So I did. Then, I realized- "I actually feel like putting on make-up". So I did that too. Do you know how long it's been since I felt like fixing my hair and putting on make-up?? Especially at the same time?? Since FOREVER ago. If I feel like fixing my hair, I don't want to do make-up because "I'm already too tired". Or I just pull my hair up in a ponytail, because it's fast and easy and I don't get out of breath because my hands are above my head for more than 30 seconds like they are when straightening it. So... That kind of encouraged me!

We get to Ft. Smith and I start coughing in the lobby at the hospital. I was kind of out of breath. The reason I was out of breath is because it was almost 2 now, and I hadn't done another treatment yet (long story- but I was unable to do one, I didn't just NOT choose to do one). Plus, it was the first time I had coughed since this morning! So, I coughed and brought some sputum up. There was no bathroom close and I didn't have a cup or anything, so (I know this is gross, but most of us have been there) I had to swallow what I brought up. Here's the thing though. There wasn't too much there! And I could definitely tell how thin it was. Normally when I had to swallow the mucus if there was absolutely no where to spit it- it would be so so disgustingly thick that I would want to vomit after doing it. It would literally gag me and I would start coughing all over again. I would get hot, and start to sweat, and have to bring my arms over my head to get my lungs as open as I could so I could catch my breath. Today, I swallowed it, blew my nose in my very last Kleenex, got a drink, and was done. Within about 20 or less seconds, I was breathing like I was before coughing. That's one of the biggest differences that I've noticed just since Friday night!

So after we left the hospital, and on the way to eat, I finally did a treatment (albuterol) and this was about 3 or so. I didn't cough doing it at all or anything. I felt short of breath walking around shopping and had to get in the buggy one time, but I am not used to getting out and walking as much I did today. It was pretty tiring (physically not mentally)! But I had fun because I felt like I could enjoy the day and not worry about "I can't breathe because I need to cough. I need to cough. (hard hard long cough that lasts about 5 minutes straight) Catch my breath, catch my breath, catch my breath, catch my breath. Take a break. Can't go anywhere else- too tired. Wanna go home. Out of breath. Gotta cough. Don't wanna cough. Hold in cough. Out of breath. Take a break. I'm tired." I actually only coughed one- yes ONE- time today. And that was when I just mentioned above.

It is now 9:38pm, I just finished doing a treatment. I coughed big at the first because of hypertonic saline, and got a reasonable amount of junk up. I haven't had to cough big since. I have just been doing small coughs and even that is getting sputum up. Not a whole lot, but I mean- every little bit helps. And I think I would rather small cough and get a little out than cough long and hard and only get little out- plus be completely and utterly exhausted from doing it.

So overall, today has been a very improved-and-I-can-tell-it day! I'm not sure if my lung function or anything has changed, but I can absolutely feel a difference in how I feel overall. I felt like I had more energy today than I had in the past two weeks combined. I also weighed today, and it showed I only gained 4 oz since Saturday morning. But, I still am hopeful that after a few more days feeling this good that I will see an increase in appetite or weight coming on. Fingers crossed that will happen!

Okay, it's about bedtime for me because even though I spent almost 12 hours away from home, and I've been up since 6:30 this morning, I feel like going to work tomorrow!!! Goodnight!
:)