I had a clinic appointment today that was a follow up from 3 weeks ago. Three weeks ago I had a routine clinic appointment. My FEV1 had dropped form 66% to 60%. The drop was largely due to my sons being born. I'm not saying it's their fault by any means. I had stopped exercising completely and had been struggling to get 2 treatment sets in each day. It's my own fault for not prioritizing my health as numero uno. I was put on Cipro (an antibiotic) in pill form for 3 weeks to help combat the drop in my PFT's and started a strict regiment of two treatment sets a day with 3 days of running and two days of P90X a week.
If you read my Thankful Thursday post from last week, you know that a week ago I made a dummy move and hurt myself. I fell from the rafters above a pool and landed on my right side on the concrete. I was hanging from the rafters, not standing on them, so it's not as bad as it sounds, lol. My ribs have been seriously hurting me after re injuring them mowing grass last week. At clinic today they took an x-ray. No broken ribs (I already knew that though, it doesn't hurt bad enough) and they didn't see any fractures initially. They did however see that I have a large contusion (bruise) wrapping around my ribs with a significant amount of swelling. It's funny because there is no bruising on the outside. The contusion is deep. So, I'm to go back whenever I feel I can give a solid effort at my PFT's.
My FEV1 today was 59%. No improvement from last time, but no loss either. It's obvious I couldn't give a full effort at my PFT today, so they want me to go back, hopefully in a week or two, when my ribs are back to normal. We'll go from there. I am still coughing more than normal and coughing up more than normal. It seems to be much thicker than usual as well. It's extremely frustrating that after getting back into a routine of running and working out along with regular treatments, I hurt myself and mess everything up. I can't cough good without hurting, therefore can't get mucous out, which is NOT GOOD. While it is extremely frustrating however, I'm looking forward to recouping so I can get back at kicking some CF booty again!
It wasn't all bad news today though! I didn't break anything! (bruises heal much faster than fractures or breaks) The biggest and most exciting news to me is that I have the chance to participate in Phase 3 of the clinical trials of Ivacaftor and Lumacaftor!!!! I have DDF508 CF gene mutations, which the study is focusing on, and my doctor thinks I'd be the perfect candidate. It may be difficult fitting in all the appointments that are required when participating in a clinical trial of this magnitude, but how could I pass this up! It's HUGE!!! I was so excited when he asked me about it and handed me the packet! Hopefully I get accepted to participate and double hopefully I get the "real deal" pills and no placebo! This is super exciting news and monumental in my book! I really can't express how excited I am. I'm trying to contain it until I officially get accepted to participate.
I also learned this week that I am not alone in a couple things that happen to me concerning my CF. I was reading an article written about a buddy of mine who has CF and he mentioned a couple things that happen to him. I was surprised to hear that I am not the only one, lol. For example:
1. I am not the only one that coordinates eating with treatments and working out due to risk of throwing up everything I eat. I figured this happened to more people than just me, but I had never heard anyone mention coordinating eating with treatments and or exercising. Oh and showering too. If I eat a meal and then go do my vest and treatments, I am going to throw up. I cough hard. It's the only way to get those nasty secretions out. Cough, and cough hard! It's inevitable that I will gag a lot from coughing so hard, and if there's anything in my stomach it's coming out. So I do my treatments, exercise and shower on a fairly empty stomach, because throwing up is no fun. It's also a waste if you think about it. All that good food going down the drain. Plus you have to eat again after. :)
2. Secondly, is that I'm not the only one that coughs a lot in the shower. When I take showers it's like my body flips on the "Get the mucous out" switch. I cough A LOT in the shower and cough up a lot of junk! Again, I thought I was alone in this phenomenon. I still have yet to really explain it. My thought is that the hot water combined with the added humidity that builds in the shower moistens up the airways and mucous, causing it to thin out and move better. That's my official educated guess. Whatever the reason though I'm glad it works, and boy, oh, boy does it work! People have been at our house before when I was taking a shower that had never been introduced to a CFer and how we cough to get mucous out. Monica said they asked several times if I was ok. :)
Overall it was a good day. Plus I still get to come home to an amazing wife and two awesome boys!!! One of which learned how to really suck his thumb today and has not stopped trying and succeeding all day. We're in trouble. Anybody have any remedies besides hot sauce? ;)
Showing posts with label coughing. Show all posts
Showing posts with label coughing. Show all posts
Monday, July 15, 2013
Friday, June 1, 2012
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!
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!
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