Hypertonic Saline: I'm a believer

I recently started taking Hypertonic 7% Saline. When I say recently, I mean 2 days ago. I was a skeptic at first. I work as an RT and we give it to patients when we need them to cough something up for a sputum culture (this is where your mucus gets sent to a lab to see if it's growing any bacteria. I have one every 3 months at the CF clinic) Out of the hundred or so that I have given, I had only seen a handful of them work in helping people cough stuff up. So, I thought it was bologna. I figured it was all in people's heads that they were coughing more up and thought hey, if you wanna inhale some salt water have it at, but not me. :)

It wasn't long after it came out as being indicated for CFers, that my doctor approached me about adding it to my regimen. I am very respectful to my doctors and have told them from day 1 that I will not try to be my own doctor because I'm an RT. What they say goes! They're the physicians and I let them be just that. I will do my own research on medications and therapies to educate myself as I believe everyone should. When you have a chronic illness you should be educated and actively involved in your care. Back to my CF docs. They (there are 2 main physicians) wanted to add Hypertonic Saline. The one asked me what I thought about it. Whether I would be able to make time to fit in another treatment (at this point I was not getting every treatment done on a daily basis like I do now), and if I thought I needed to add something to keep me healthy. I declined and he agreed stressing that I HAD to start doing ALL my treatments as scheduled.

About a month ago, being an RT at the hospital where my CF clinic is, paid off yet again. I had the opportunity to sit in on Pulmonary Grand Rounds (where a pulmonary physician picks a topic and discusses it). The speaker just happened to be my CF doctor and the topic just happened to be Cystic Fibrosis! It was a fascinating presentation where I learned even more about what causes the disease to "function" the way it does, more about how CF treatments work in specific detail, and all sorts of other info. For example, the average CFer coughs 600 times a day!!! That's A LOT of coughing! No wonder my abs are so ripped, jk! :) Another is that a "healthy" person who developed a pseudomonas infection in the lungs or blood would probably have 10,000,000 colony forming units of pseudomonas. After 2 weeks of antibiotic therapy the pseudomonas would be wiped out. When a CFer has an exacerbation (they get sick), they can carry as much as 100,000,000 colony forming units of pseudomonas and after 2-3 weeks of IV's, will drop to 2.5 million colony forming units.  Our bodies are constantly fighting an infection that antibiotics cannot completely wipe out. This is one reason why we can feel tired at times and eat so much without any weight gain. Our bodies expend a lot of energy fighting the infection in our lungs. Fascinating right?!

To wrap up this long post, he discussed Hypertonic Saline and the reasons it is recommended for CFers. In the lungs there's a layer of fluid that have small finger like jobbers called cilia. The cilia move the mucus layer up toward the top of the lungs where it can be expelled (coughed out). Most people swallow it in their sleep. This is how the lungs clean themselves out. With CF the fluid layer is virtually non-existent. This is because the sodium-chloride channels in the lungs that help keep the fluid layer fluid are blocked. So the fluid layer has hardly any fluid to it. These channels being blocked also causes the mucus to be very thick and sticky, which crushes the cilia. So the lungs can't move the secretions out. Which we all know is what causes all our problems. Sooooo...... Hypertonic Saline makes the fluid layer in the lungs "beef" back up so the cilia can push the secretions out! Plus, it hydrates the secretions making them easier to cough up, and in some people irritates the airway inducing a cough. It works in 3 different ways, and I have definitely been able to tell! Plus, it makes me feel like I'm at the ocean swimming every time I swallow! Mmmm, salt water :)

Moral of this post: If you have CF and aren't yet taking Hypertonic Saline I suggest talking to your CF team about it and getting on the bandwagon! It works!

I feel fine...

What up followers! Well I had my clinic appt. today and sadly the news I got was not what I was expecting. My FEV1 was 59%. 3 months ago I had my very confusing bout with my PFT's when I was feeling really crummy, they were at 62%. After 2 weeks of IV antibiotics, usually I would see a jump of 7-8%. At that time, I saw a drop of 2%. Now this time after 3 months of working out, not missing any treatments (I never do anyway) and lots of running, they were 59%. Needless to say I was very confused by this. I spent the drive home and some of the evening mad and upset at these results, as I'm sure most of you reading this with CF can understand. My frustration got the best of me at the time. I wasn't so much upset at the number or the fact that I will obviously have to add more exercise and will be adding hypertonic saline to my mix of medications. That's going to be my life with CF, adding meds and adding to my treatments as I get older and the disease progresses. I've accepted that fact. At the moment all I was thinking was "Where am I going to add time in my day to get this done?"

Some CFers out there are lucky enough to work from home. I'm hoping someday God will open a door like that in our lives, but as of right now, I work 40 hours a week. It seems as though there is always something going on in our lives. Almost every evening there's something competing with my treatment and exercise time. That's life though, there will always be something going on. My dad always had this saying growing up that still rings in my ears, "Son, you have time where you make time." As much as I hate to admit it, this is true.

I also learned today that I don't really know how to respond to the question "How do you feel?" I know that may sound funny, but they always ask when my numbers are down, "Well, how do you feel?" I always say fine, because for the most part I always do feel fine. I've come to realize I think that my definition of how I feel and the CF team's are different. When I think of how I feel, I am thinking in terms of at the moment. Do I have a stuffy, runny nose, sinus congestion, chest cold, coughing all night. That is my definition, however I believe their definition when asking how I feel is how has your mucous been? Thick, more of it, more color to it? Do you feel run down, tired a lot? Have any other CFers run into this? I was talking to my mom on my way home from clinic today and she was asking me these questions. I told my team I have had some increase in sputum production and it seems to be quite thicker and more green as opposed to the usual pale yellow color. But when I said I feel "fine" they said there's nothing to worry about then and we shouldn't do anything. Probably just had an off day or something.

I guess I need to change my definition of how I feel in my mind so I can relay what's going on with my health more clearly. I also think it comes from this deeper desire to not want to seem whiny or weak. I don't like to admit defeat or admit that I don't feel good even when I don't. I'd rather hide it and try to get better on my own by doing more treatments and intensifying the things I do to stay healthy. This obviously is a downfall of mine. Anybody else relate? I'm learning to get over this and call the clinic when I feel crummy instead of waiting 2 weeks til I'm really sick and then call. I guess that's part of being a man and wanting to feel tough and manly. :)

Lastly, I did get a bit of good news today! They discovered what my other gene mutation was. Up until this point, my chart always had one listed as Delta F508 (the most common CF gene), and the other unknown. I had some genetic testing done, and it came back that I have 2 Delta F508 genes. The team was unsure of how the other hospitals could have missed this, but the last time I had been tested was in 1989. It's good to finally know what my gene mutations are. Hopefully within a year or so they expect to see some drugs coming down the pipeline for DF508 CFers. Until then, it's time to GET MOVING! Keep running, keep knocking out treatments every day, and as Tony Horton says on P90X, keep pushing play! For all you CFers out there, keep at it!