Do you cough in public?

I was so excited to answer this question as I know plenty of other cysters and fibros struggle with this issue - coughing in public. I hope this answer gives you the confidence to cough like there is no tomorrow...even if you makes others uncomfortable.

I have a question for the CF "expert"  

So i've got that LOVELY CF cough goin' on right now. Luckily right now it's mostly dry so I don't have too much mucus coming up. But you know the drill, a coughing spell every few minutes or so. How should i handle going to dance? Should I skip out until my cough hopefully calms down a little bit? Because I don't want CF to hold me back any, but i also know the realistics of it. I mean I wouldn't want to dance with someone who kept coughing, even if I was told it wasn't contagious. Because a few of the classes we rotate with all the partners which means gettin' all up and close and personal with everybody multiple times through. I can exercise here at the house for the time being, but i also love dance and miss the people (i've been gone doing a CF study for the past 2 weeks so I haven't been able to see them or go dancing. Sadness!!) . What's the smart thing to do? I want to do what i love, but I also want to be smart and considerate of others.

Alright, first things first, I'm humbled you'd even care what I think about this. Second, I'm no expert, and I actually recommend doing the exact opposite of anything I suggests to be on the safe side :) Third, I'd love to share my thoughts with you!

Let's establish this - coughing is a good thing. Yeah it's annoying (both to us and others), but it's playing a vital role in keeping our lungs clear. I myself am a cougher whether I'm at 30% lung function or 100% lung function. In fact, I give much credit to my cough for keeping my lungs relatively clear my entire life. Sometimes I bring up junk and sometimes I don't. In fact, I've coughed about 10 times since writing this response and have only brought up the goobery goo on two of those coughs.

Coughing can indicate that you are experiencing an exacerbation or outside sickness, but it can also be an indication of asthma, allergies or nothing.

So now that you know coughing is completely okay (at least in my eyes), what do you do about it in public?

I think you know my answer - I cough, and I don't care where I am. I'm at the gym 6 days a week. 3 of the days I do partner work in a fitness class and three of those days I'm in a small room with others doing a core class. Needless to say, I'm coughing near, on and around all of them.

Apparently I don't have a lot of pictures of me coughing.
This was the only one I could find off-hand and it's very old!

If I end up with a new partner, and I've already started coughing before the workout even began, I usually go with one of three phrases that all start with "Don't worry, I'm not going to get you sick....

a) I have Cystic Fibrosis and part of it is that I cough a lot, especially during workouts.

b) I have asthma and my lungs are extra tight today.

c) I'm just a cougher.

One of those three answers always seems to put my partner at ease and we can move on with the class.

When it comes to coughing in public, frankly, I'm not very considerate - especially if I'm doing something beneficial for my health. The truth of the matter is that clearing out my lungs and doing something that in the long run is beneficial to me and my family is WAY more important than the thoughts, stares and feelings of others.

It reminds me of a blog I wrote a while back about being selfish. There are times in this CF life that you HAVE TO be selfish. The funny thing is that often, by being selfish, we are doing one of the most selfless things that we could ever do. The blog is here if you're interested: http://runsickboyrun.blogspot.com/2012/07/are-you-selfish-i-hope-so.html

So what do I think the smart thing to do is? Dance and cough your little booty off!!

Sometimes life calls for us being comfortable with making others uncomfortable.

Hope this helps :)

There Will Be Blood

Yesterday was a good day! It started off with a morning walk in which I painted the city streets gold with my mucus (although it was actually pretty clear). I can't stress enough how good it feels to get a walk in first thing in the morning. I know I sound like a broken record to you regular readers, but if you're thinking about starting an exercise program to improve your lung function, start there! You'll never cough up so much mucus!! I was just chatting with a fibro over on CysticLife who just made a morning bike ride part of his routine and he is AMAZED at the difference in how he feels the rest of the day. I just think it's so important to get the mucus up and out that has just been sitting there as you sleep at night!

Jezzabel and I also had a great time down at the wash! It was hotter than normal so she didn't have her usual stamina, but it was still a good time. We did a couple of sprints together and then apart from her trying to chase down a bird, it was pretty uneventful. Actually, I just thought of something. While in the wash I picked off a cuticle from my right pinky finger. It proceeded to bleed like CRAZY. We're talking blood dripping from my finger crazy! Anyway, I made my way back up to Mandi's house and proceeded to convince her and her mom that I had gotten bit by a snake while trying to protect JBell. They bought it hook, line and sinker.

Finally, I wrapped the day up with a nice run. It felt 1,000,000 times better than yesterday, but it was not without a slight hitch. My lungs felt great. My legs felt great. And I was keeping a nice pace. Problem was, about a mile into the run I had a very hard cough that ended up producing some blood. I kept running to make sure it wasn't a fluke, but after 3 more gobs of blood and mucus came up, I decided to slow it down to a walk. Hey, it happens. No reason to panic or get upset. I just made sure that I continued to cough until all of the blood was cleared and then I'll be back on the road tomorrow. This is just one of those times not to make a mountain out of a mole hill. Blood happens. Deal with it and then move on :)

Thanks again for all of the encourage words yesterday guys!! It really pumps me up and motivates me to get all of my workouts in!

Confessions of a Chronic Cougher

I received a great question by a mom over in the CysticLife community that I wanted to take the time and answer over here on RSR. Here is her background story with (bolded) questions:

levi has been sick for about a week and now he is to the point where he is coughing while laying down, running around and basically on and off all day. its a wet junky cough and i swear i have been using my stethoscope for the past 3 1/2 years and i never can tell what the heck im hearing if its a wheeze if its not? so anyways the last three times he has been in over the last few months with colds he has not cultured anything not normal so the doc has been going back and forth as to whether or not to admit him so i really dont want to push taking him in because id hate to see him go in at this age. last time he was a champ but he was a little over 2 and honestly would get poked and then forget about it but now he is older and brighter so he knows whats coming he still does really well and isnt afraid of the doctors or anything like that but we want to do what is best for him. he usually gets a cold and starts with a runny nose then he starts to get a wet cough and then he starts the wheeze so most of the time he starts an oral antibiotic and then prednisone. he already does albuterol 3 times a day and his vest 3 times a day for 30 minutes. we started that after his last hospital stay because they did it 3 times a day when he was in so we thought is three better than 2 and they said yes so why the heck wouldnt we continue that if it is better so right now he is doing his vest 3 times a day for 30 minutes and he doesnt mind it at all he actually likes it because that is the only time we let him watch tv that way he looks forward to it and an hr and a half is enough tv in my option for a 3 year old. so anyways he is already doing that all the time so is there anything else you think we could be doing to help him. its hard to because he totally wants to play and run around but then he just coughs more. i usually let him play until he decides its too much or if hes coughing a ton we just do something else like draw or something more calm. anyways i just totally rambled so we are at that place of not knowing what is best. any suggestions or insight to how you feel when you are going through something like this. its hard because he can only tell us so much of how he is feeling. we know his body pretty well but only externally from what we see we see and hear but we cant tell how he is feeling. basically we do all that we can he never misses a treatment well i shouldnt say never (well maybe 2 or three when we go to disneyland or the beach or something fun but basically we are all over his health and do all that we can to keep him healthy. so any advice would be awesome! sorry for rambling. k the boy is off the vest gotta run. we will be in touch. have a great night!

First of all, I can't stress enough that it sounds like you're doing a wonderful job in raising your boy! It sounds like you've found a nice balance between his life and his cystic life. A couple things I would say to you however...

One, coughing does not always mean sick. I'm a chronic cougher. There, I said it. No seriously though, I cough all of the time. I've coughed since I was his age and I continue to cough now. I coughed when my lung function was over 100 percent and I cough now with it in the 60's. Point is this, it's important to look for other signs that your child is giving in order to determine an exacerbation or not. You can check mine off the list every time I get sick. I'm more tired but I sleep less. I have to force myself to eat. I wake up in the middle of the night coughing; all night long. I usually wake up more tired than when I went to bed. I have a REALLY tough time motivating myself to exercise. My stools float more. They're stinkier. I'm generally nauseated. And I can't get my mucus to ever be clear at any point of the day. Whew!! I know, quite a list. But, it's important to note, that that is MY list. As a parent, you want to make mental notes about some things that ALWAYS happen when they are really getting CF sick. For me, coughing isn't one of them. I'm always doing it.

It sounds like you have your son on a very strict treatment regiment. Here's a couple of things I would try to switch it up. Have you ever thought about hand pounds? For me (apart from running), nothing works better at getting the mucus up and out. Ultimately, that's what is important. Getting the gunk out of there. If you can manage the mucus, you can manage Cystic Fibrosis. Is there something that ALWAYS gets your son coughing? It sounds like it may be just running around and playing. I would suggest having him do that more. There's nothing magical about the vest, I hate to break it to you. I mean, it does a great job for most people in doing it's job, but it's not the only horse in the race. We as a community have to figure out what works best for us at clearing out our lungs and forcing us to take deep breaths. You, as his mother, have that responsibility for your young son.

Also, to get back to what you hear when you listen to Levi. You may never hear him wheeze. In my 30 years, the doctors have told me that they have heard me wheeze less than 5 times. In fact, 9 out of 10 times, even while in the hospital, they say I sound "pretty good". Maybe it's because of all that coughing I'm doing :)

Last piece of advice. Use your instincts as a mother. There's no guide out there written specifically on how to manage your son's CF. We're all different. Sure, we can take bits from some and pieces from others, but like I say to people all of the time, "You're CF has NOTHING to do with anybody else's CF". The proverbial different strokes for different folks. Don't ever make decisions based on being the mother of a child with CF; make decisions based on being the mother of a child.

Caution: Harmful Fumes Ahead (for CFers)

On Thursday evening, I decided to paint my nails. I'm not much of a girly-girl, so I rarely partake in this form of pampering, but for whatever reason, I decided Thursday night was the night. Ronnie and I were watching TV, I jumped up, grabbed the the nail polish bottle, plopped back down next to Ronnie and began painting. Two nails in, Ronnie moved to the other chair. I didn't think much of it. After finishing my manicure and waving my hands in the air (who knows if that actually dries your nails faster), I moved to get closer to Ronnie in his newly selected location. As I started to get close, Ronnie lovingly said, "just so you know a little something about me," he paused, "nail polish really irritates my lungs. "IT DOES?" I replied, feeling a little bad for not knowing. How would I have known? I never paint my nails. It doesn't bother my lungs. I just didn't think about it. But after he mentioned it, it seemed like a no-brainer.

I decided to compile a list of things I know of that irritate Ronnie's lungs, in case you have little ones that can't/won't speak up:

-Smoke - this seems like an obvious one. And sure, if someone is blowing cigarette smoke in my face, I notice, but there have been many occasions where Ronnie will say, "someone's smoking, let's move" and I haven't even smelled it. This goes for other kinds of smoke also. Smoke from cigars, pipes, bon fires, burning meals, etc. After a night with a lot of smoke around, Ronnie will often cough up blood.

-Car fumes - When we're running or walking on the sidewalk of a busier street, Ronnie often complains of how the car fumes make his lungs feel and it often irritates his lungs making him cough more.

-Air fresheners and scented candles - Bathroom aerosol sprays, plug-ins, regular old candles, these often make Ronnie's lungs feel irritated and "itchy" in his words. If you're looking to "freshen" the air a little try potpourri.

-Perfume - If someone has too much perfume on (not just when spraying it) it really tightens up Ronnie's lungs. I'm not sure there's any way around this other than cutting back on the perfume usage. I do wear perfume and Ronnie has yet to complain, but when I wear it, I go light.

These are the only offenders that I know of. I didn't realize how much more sensitive CFers' lungs were. I hope this list helps.

If you have any others, please leave them here.

P.S. If you haven't made it over to www.NatureMade.com yet to see Ronnie's story, check it out. I'm super proud of him :)

Return of the Coughing Attack

6:00am: Man, this morning was full of coughing! The stuff I was bringing up wasn't as dark as it usually is first thing in the morning, which I guess is good, but I just couldn't shake the tickle that was making me cough. Most of my mucus was a bright yellow, almost as if somebody had used a highlighter and went crazy in my lungs. On my walk I was coughing so much that I had tears running down my face. I'm sure fellow dog walkers must have thought that Jezzabel and I were in a pretty bad fight. All I know is it looks like I built a yellow brick road going from my house around the neighborhood, but of course instead of bricks, I used my spit.

My legs felt good this morning and the heaviness from last night wore off. I did feel a slight shin splint coming on and my left foot started to hurt, but I'm hoping that it is just temporary. I REALLY want to run tomorrow. I've tried to do the right thing by not pounding my foot for a while and I just hope it pays off. My lungs need to get a good run in. They haven't been challenged for a while in the way that a run challenges me. Let's just hope that come tomorrow, I can pull it off.

Total Distance: 2.1 miles Time: 37'59"

3:00pm: Before I headed to the gym today I devised a new workout plan to start with the first of the month. I want to keep my body guessing and hit other small muscle groups. I put together a new workout for my chest and back that I pieced together using some sources on the Internet. The new back work out focuses a lot on lats which is good because I haven't worked them hardly at all over the past couple months. In my new chest work out, I don't even do a regular bench press. I noticed that the bottom portion of my pecs weren't really getting hit so I switched it up to a decline bench. I also added more fly type of motions for both chest and back. Most importantly however, I added push-ups and pull-ups. Those two things are a very simple way to get some sort of shape back and they definitely make you do some deep breathing. If you're thinking about starting a workout, I'd start there. Just do some push-ups when you wake up and before you go to bed. It's all about baby steps. Current Weight: 188 lbs.

5:30pm: It was actually a bit humid out for our walk tonight. Now, just to give you a heads up, I can't stand humidity. Don't get me wrong, I was probably at like 10 percent humidity, but I could feel it. It feels like somebody put a five pound weight on my chest when it's like this outside. Not a huge difference, but I could certainly feel the affects. The walk went well, but I did have some foot pain. I'll have to just make a call tomorrow as to if we attempt to run or not. I really want to run, but I don't want to further any damage. I guess I'll just have to play it by ear.
Total Distance: 2.1 miles Time: 36'35"

Total Distance Walked for Day: 4.2 miles

"Scratching" My Lung Itch

7:30am: I slept in a little bit today cause I know that tonight will be a later night than usual. It felt VERY good to do, believe me. J Bell wasn't too happy about it and had been panting at my door for about an hour. I felt well rested when I got out of bed and my lungs felt more clear than yesterday. I got a lot of gunk up initially but it then subsided until I was about half way through my walk. My lower lobe is a bit sore today but I think it may have to do with coughing a bit more than normal. I have had an "itchy" lung the last couple of days, so I've really been focusing on getting it out of there by "scratching" that itch, aka coughing. I have a powerful cough as it is, but it's REALLY strong when I'm forcing them out. I'm surprised I haven't broken a rib at this point.
My walk went well. It was definitely hotter than usual, but I kind of like that cause I break into a sweat sooner. Something about sweating really makes me feel like I'm working hard. I'll really feel like I'm working when the Arizona summer hits! My feet and legs felt great and I had a really good pace. By the time I got back home I felt wide open and was taking in some really deep breaths.

Total Distance: 2.1 miles Time: 35'16"

3:30pm: Mandi got off work early today (she went in at 5am) so we were able to go to the gym together earlier than normal. It was a good thing cause we have a CFF event tonight that I'll be saying a couple words at. I posted the event video a couple of days ago, definitely check it out if you haven't seen it. We still had to be on the ball at the gym and couldn't fiddle fart around though if we were going to be ready for the event in time. I still had to do my treatments and write this post.

We both did legs and shoulders today. Mandi had to back off a little cause her knee was bothering her, but she just lessened the weight and increased the reps on her lifts. My legs felt great on the other hand and I was able to increase the weight or reps on every lift. My shoulders hurt today while I was lifting, so I didn't get too aggressive with them. Overall though, I felt strong and got a great workout in.

To finish up the workout we each did 15 minutes on the stair climber. We really wanted to finish our legs off and figured that would be a good way to do it. Let me tell you, the stair stepper did it's job. I was sweating like a pig and it was forcing me to take some big ol' breaths. I felt good all of the way through and kept the same pace throughout. By the end of our time I had done 40 floors and I felt great about it. That is, until Mandi yelled out from the machine next to me, "80 floors! Boom!". I hate her. Current Weight: 186 lbs.

Total Distance Walked for Day: 2.1 miles
Total Floors Climbed for Day: 40