Breathing Deeply: My Life With Cystic Fibrosis

Okay folks, I know this is a tad on the goofy side, but I can't get this tune out of my head, and being the creative type I've been singing my own lyrics to it. It's to the tune of "Do You Hear the People Sing" from the Broadway musical, Les Miserables.

Do you hear the patients sing
singing the songs of angry men;
it is the music of a people who need IV meds again;
when the wheezing in your chest
keeps you from getting enough rest
there's a tuneup about to start when tomorrow comes.

Will they put a PICC line in?
or access that portacath?
Soon the drugs will begin
when the pharmacist does his math.
it will be harder to shower and harder to take a bath!

Do you hear the patients sing
even though breathing is so tough;
it is the music of the people with inhalers that go *puff*!
When the PFTs go down
and our mucus turns to brown
there's a tuneup about to start when tomorrow comes!

I knew I was out of shape, but I didn't realize just HOW much ground I had lost while battling pneumonia. I can't do my bench presses anymore, and it's a struggle just to lift my 5lb weights to do some pectoral flies. While I have some time at home before I go back to work, I plan to slowly restart my exercising routine. I would love to be in good enough shape to take advantage of the gym at Mount Hermon when I go in a few weeks. The thing I really need to work on is coordinating my breathing as I lift the weights. That will definitely help me improve my FEV1 I think.

Speaking of which, I now have a small home version of a spirometer. It's not particularly impressive, but it does measure peak flow and FEV1. I figured now would be a good time to start using it more diligently since I know exactly what my FEV1 was the other day. I think I'm going to have to apply some sort of correction factor to it if I want to know how it compares to my PFT results at the doctor's office.

Tomorrow is my follow-up appointment at the CF clinic. I have the last appointment of the day (8pm, ugh!) so I'm pretty sure I'll end up doing my evening infusions there while I wait. I'm hoping that the doctor will clear me to stop the IVs on Thursday, which is when they were originally scheduled to quit. It's not uncommon for me to do a 3 week course of antibiotics though. As of Thursday it will only have been 2. We'll see what he thinks.

Energy-wise I'm doing well. I would be in favor of stopping the antibiotics so that I can start gaining my weight back. These drugs are really hard on my digestive system. No matter how much I eat, most of it comes sliding out. Not fun in the least. Also, the tobramycin makes me so incredibly thirsty all the time. The excessive thirst was really beginning to concern me. I was worried that I'd finally crossed the threshold into having CFRD. My blood sugars however have actually been on the low side. Today I got so low in fact that I nearly collapsed. Fortunately we were at the mall and a roll of lifesavers followed by some lemonade from Hot Dog on A Stick nursed me back to full glycemic health.

I'm anxious to get back to work, but I don't want to push it. My supervisor has been very understanding and isn't pressuring me into anything. I'm so thankful and blessed to have the job I do. Freelancing is going well too. All in all, I'm in a good place right now. God is good and so is the life He's given me.

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If you have some time on your hands, I'd like to encourage you to read my most recent articles. A lot of them are about health topics, but there's some other interesting stuff thrown in.

The Health Benefits of Peanuts

Peanut butter sandwiches. Salted shelled peanuts. Unshelled, unsalted. However you like to eat your peanuts, there's no denying that these wonderful little legumes are a healthy choice in the diet.

Using Aspirin to Treat Teen Acne

Acne treatment can help solve the problem but are often expensive and take six to eight weeks to yield visible results. Interestingly enough, a less expensive and faster solution may come from aspirin.

The Dangers of Using Expired Drugs

The symptoms are all the same as before, so you diagnose yourself as having the same nasty bug you caught last year. Rather than reaching for your car keys to drive to the drug store, you reach for the medicine cabinet, and are pleased to discover that you still have some leftovers of the medications you used last year. Almost as an afterthought, you glance at the expiration date and discover that the date has long since past. "What's the harm" you think, "it's probably still just as good as before."

Natural Ways to Decongest a Baby

A runny nose. Congested breathing. Wet-sounding coughs. Sounds like the baby has caught a cold. When older children and adults get sick, treating the problem seems easy. But when your baby has a cold with congestion, figuring out the best way to help alleviate the symptoms can be a challenge. Here are four easy, natural ways to help your infant start breathing better.

Why High-Sugar Diets may cause Yeast Infections

Whether it's the kind that manifests itself on the tonge as oral thrush, or the itching and burning type that affects your nether regions, a yeast infection is something no one wants to endure. One of the ways to avoid getting one is to be careful to limit the amount of sugar in the diet.

Facts About Dental Hygiene

Proper hygiene not only keeps you from having embarrassingly bad breath and a less-than-sparkling smile; it can yield a healthier body too. Your smile is most likely the first thing people will notice about you. With this in mind, good dental hygiene is just cosmetic and healthful, it's polite!

I've been home from the hospital for more than 24 hours now. I was admitted a week ago Thursday after going to the ER for shortness of breath and low oxygen saturation. Thank fully I have a pulse oximeter here at home that I use, so my husband was able to check my sats in order to figure out how bad of shape I was in. My sats were in the 80's and I was having a hard time doing anything normal. Even walking across a room or brushing my teeth made me severely out of breath.

The visit to the ER was actually a productive one. They gave me a nasal canula for oxygen right away, and I felt some relief. Then they whisked me away for a chest x-ray which showed that I had developed bronchiectasis and pneumonia. They accessed my port-a-cath and started me on IV antibiotics and fluids to help. I was so impressed that I was given Merrem and Tobramycin in the ER. Eventually I was admitted to the hospital and taken up to my usual room on the 3rd floor.

For the first couple of days I needed the oxygen round the clock. I was so exhausted that all I could really do was just lie back and let the IVs do their work. My team of doctors included an intern, a resident an attending, and my CF specialist. The intern, resident and attending actually did a good job of meeting my needs as a CF patient. So often I feel like I have to reinvent the wheel with the new doctors. It was nice to have some medical professionals who seemed to at least have a working knowledge of CF. What they didn't know, they asked, and they were up front about asking me to describe what was normal for me and how I like my treatment to go.

By the third day I was only using oxygen intermittently. The respiratory therapists came to administer my treatments of nebulized medications and percussion therapy. They were on-time about 80% of the time, which was really great for keeping me on a set schedule. I've been able to continue with my own therapy here at home with a similar schedule.

I had pulmonary function tests on Friday, Tuesday, and then again Friday (yesterday). My FEV1 was horribly low on the first Friday--only 1.38L. By Tuesday it had improved to 1.78L. The doctor said that once I got up to 2.1L I would be allowed to go home on IV antibiotics. Yesterday was the big test. My first few PFTs were only 2.08L. Then, on my last try I finally got a 2.12L. I was THRILLED! Of course, being told I could go home was still only part of the equation. The rest was actually getting all the paperwork signed and the home health care people scheduled for a delivery.

Miracle of miracles, the whole discharge process only took a few hours. I was given one more dose of Merrem and Tobramycin before I left, which took an hour and a half. We were home by 5:30, and the home health care people made their delivery of medications and supplies before 8:00. I couldn't believe it. Usually it's like herding cats to try to get that home health care stuff arranged.

I'm supposed to continue on IVs until Thursday. I have an appointment at the CF clinic on Wednesday to check on my progress. I'm so thankful that everything went so smoothly. It brought me a tremendous amount of peace of mind to know that things were being taken care of in a timely manner. My only complaint was that the nurses had no clue about dispensing my Pancreacarb enzymes (why is it so hard to understand that I take them WITH MEALS?) but really that's not a new problem.

Being back at home is wonderful. I'll stay home next week and return to work the week after. My doc has recommended that I do what I can to take it easy, so I am.

The other night I felt awful. My legs and joints were painful, swollen, and warm to the touch. It was a lot like when I'd get edema as an allergic reaction to cipro. Since I had been on a new medication for the last 2 weeks, I figured that was the source of the problem. When my breathing got wheezy and tight, I was even more convinced that what was going on was an allergic reaction. The weirdest part was the fever. That didn't seem to quite fit.

The fever was awful yesterday. I felt so cold, even bundled up in layers and a sweater, but I was still trembling and shivering. My hands were shaking so badly I could hardly type, and my teeth were chattering enough to make talking a challenge. I only stayed at work for the morning before I came home. I spent the rest of the day on the couch, drifting in an out of sleep with a pile of blankets on me an a space heater aimed at me.

I seem to have sweat the bug right out of me. So much dried salt had crusted on my skin from the fever, that once I got into the bathtub, it all just floated on the surface. Very gross. I had to follow up my bath with a shower, just to be clean!

Today my mom came to town to help out around the house since I'm under the weather. She's really great about that. Sometimes I feel guilty for having her come down to help out. I feel like I should be able to do things myself and not need any help. But then I come to my senses and realize that there are certain things I truly cannot do when I'm sick or having trouble.

Yes I'm only 27, but I'm a 27 year old with progressing CF. I'm not a wimp, I just don't have the physical resources available to me that that my peers do. I do what I can with what I've got, and for what it's worth, I think I do a pretty bang up job of it. :)

In the meantime, though, I'm still fighting off this bug (which I may have caught from my CF nurse on Monday) and resting as much as I can.