Blue-Eyed Breather

One of the biggest inconveniences of having CF is the difficulty in traveling with all of my heavy equipment. Want to road trip for a day? You have to grab at least the puffer and flutter, along with pills and water. Want to spend the night somewhere? You have to evaluate if you're healthy enough to skip doing a Vest treatment or two and just use the puffer/flutter. If you are, you have to take that breathing stuff, pills for two days, a separate pill container for the pills taken at times other than mealtimes, kleenex, juice and snacks for blood sugar and calorie purposes, insulin, and anything else one might need for an overnight trip. If you're not healthy enough to switch out a Vest treatment for a puffer/flutter, you have to also take the Vest, Vest machine, and nebulizers and machine, along with inhaled medicine. Going on a trip any longer than that and, well, you might as well sit down and write a packing list so you don't forget anything vitally important. Usually...

Wow, what a week. Last Tuesday, I went to the doctor. My lungs weren't doing well, and I was having a pretty severe pain in my right middle lobe area. The appointment went in a completely unexpected direction. My doctor wanted to do a bronchoscopy Thursday to see if we were missing anything down in my lungs. Although a bronchoscopy is not an invasive surgery, I still had to have anesthesia and miss Thursday and Friday of work. My doctor also wanted me to follow the bronch up with three weeks of IV antibiotics, even though I just finished a course of antibiotics about a month ago. I was strongly opposed to missing work, but I still had the bronch Thursday and started IVs. The bronchoscopy went fine. My doctor took several sputum cultures from different areas of my lungs so if any new bacteria is invading them, we'll be able to see soon. The anesthesia from the surgery wiped me out--I had absolutely no energy Thursday through Sunday. I'm not sure if I've ever slept as muc...

Dear blogging world, It's been a long time since my last post! To say the least, the month of June has been a hustle and bustle of activity. I've been working at Baylor's speech pathology camp, which works to improve language and literacy of kids through intensive therapy. I've loved every second of my job in the reading department, although I have never been quite so exhausted. ;) We can already see such improvements in our clients!! It's an amazing feeling knowing that every day I spend pouring into my clients' lives, their future is changing for the better. And that fact alone makes the exhaustion, long hours spent decorating, and tiny annoyances all worthwhile.  However, my health during the summer never seems to go as planned. If anyone is ever going to have any weird problems related to CF, it'll be me. Why? I have no idea. Last summer, it was the low blood pressure hospitalization and hasty sinus surgery. This summer, I'm having serious is...

I wish people knew what breathing felt like for me. I am always embarrassed when I can't keep up with my peers, when I'm out of breath after walking up a flight of stairs, when I take awkward breaths in the middle of talking because I need oxygen. People give me looks that say, "wow, you're out of shape," or "you should get to the gym more often". I work my behind off to keep my lungs as healthy as I can, but I guarantee you that breathing with 60% lung function is a lot different than breathing at 100%, even if you work-out often. However, there's no way to really describe my breathing to a non-CFer. If people could breathe with my lungs for a day, maybe they'd understand the struggle I go through on a daily basis but am unable to verbalize. Maybe they wouldn't abuse their bodies as much as they do.   I wish people knew how furious it makes me when they take their health for granted. I can barely keep myself from giving smokers a pie...

In recent years, my body has not responded to lung infections as well as it used to. I get low-grade fevers, aches, and have difficulty breathing. It's like I'm taking a beating! Unfortunately, after being on steroids for five days, all the junk in my lungs has been stirred up. Since Thursday, I've been flat out exhausted, and my cough has gotten significantly worse. And now today, I have a slight fever. Boooo. Because I'm already on oral antibiotics and the bacteria I grow is resistant to almost every drug available, I'll be starting IVs this coming week. I was hoping to postpone the meds until after school gets out in the middle of May, but with the way I'm feeling now, that's just not possible. This will be my second time to do IVs on my own without constant parental assistance. I know I can administer the medicines no problem and that I'll be fine remembering my IV schedule. However, it's frustrating that I'm needing to deal with illness now....

Most days, I'd say I'm a pretty positive person. I hate being grumpy and in a bad mood, and I don't like the person I turn into when I'm frustrated and upset. If you sense a "but" coming, you're correct. This afternoon has been a downhill battle. You see, my cough has gotten significantly worse in the past week. In the morning especially, I feel like my airways have been cut in half. This isn't very unusual for me. My last round of antibiotics was in January, so I'm impressed I made it this long without needing medicine. Well, after going back and forth between the CF office and myself, the final decision was that I could start IV meds or I could start IV meds. No, that's not a typo. I literally had no say whatsoever in my healthcare, even though I haven't seen the doctor, done PFTs, or been evaluated. I just wanted to start on oral antibiotics, for crying out loud! Not only did I have no say in my treatment plan, but my doctor is constan...

It's the time of year all CF patients hate and dread--flu season. The flu is bad enough for people who have normal respiratory function, even worse for those of us who struggle to breathe normally. To try and prevent the flu, I always get the flu shot, and this year was no exception. Because the virus mutates every year, scientists have to make an educated guess about how to best make the shot. Therefore, the shot is not always effective. You still have to be careful around infected people. If you have the flu, please do everyone a favor and quarantine yourself until you are no longer contagious. One of my biggest pet peeves is when people knowingly expose others to bad illnesses. Keep in mind that it is rude and seems very selfish to come to class or work with the flu. No one else wants to get sick, and you never know how that illness might effect others. So please, wash your hands, take your vitamin C, and stay away from others if you are sick. We will all make it through the f...

Hey blogging world! Long time, no chat. Do you ever have one of those weeks that seems to drag on forever and ever? It's not necessarily a bad thing, but even still you just can't seem to keep track of what day it is because each day feels like 48 hours. That's the kind of week I've had this week. Hence why there's no way it's only Wednesday. Between starting back to school on Monday, going to job training every day this week, staying up late and getting up early to do IV antibiotics, going to Sing Alliance practice, and doing regular readings and homework for my classes, I feel like I've been running in circles. I think it takes a week to get back used to managing work and school and social events in normal circumstances. The transition from being able to do whatever you want, whenever you want to having to be on top of things and motivated to get stuff done is definitely a challenge for many people. Being completely upfront with you, I usually don'...

Before heading back to school, I decided to start on a course of IV antibiotics. It's pretty typical for me to be on IVs twice a year for what we CFers like to call a "tune up". Tune ups are regularly scheduled IV antibiotics that help the lungs continue to fight infection. They are like reinforcements in the midst of a battle. I go on IVs so often because the bacteria in my lungs is very resistant to medicine. Unfortunately, as my body has gotten older, it has also become weaker in not feeling the side effects of medicines. As a child, I was hardly ever nauseous with IVs, even though the antibiotics are heavy-duty drugs. Now, I get nauseous without fail. I feel slower and weaker when on the medicine. I also am fatigued quickly. I know the medicine is working for my body and doing its best to fight CF, but it sure does take its toll on me. I will be doing a week of home IV antibiotics while I'm at school. This is a big step for me because I've never done IVs c...

It was bound to happen--I was "due " for a lung infection after being relatively healthy all semester. I was just waiting for CF to pounce. I'm just glad I didn't get the infection until right before break so I didn't feel miserable in the middle of classes. My lungs are suffering from upper respiratory problems. The sickness came on fast and furious--one moment, I was enjoying another spiritually challenging Sunday service, praising Jesus with my fellow believers, and the next, I felt like I was about to pass out, stop breathing, lose the ability to focus, or experience all the above at the same time. My blood pressure was low (but that's common for me), my pulse was high, and Advil would not make my headache go away. During my breathing treatment Sunday night, my sputum was pretty disgusting, and I'm pretty sure I coughed up a plug or two. To top it all off, I crashed around 8:30 last night and went to bed around 9. After some much needed rest, I...