Night Cough Survival

Night cough and CF go hand in hand! I don't know about you, but sometimes my night cough pushes me to the brink of sanity. The thunderous cough that keeps me awake all night, despite my body aching to sleep, always ensures the next day that I will feel like a zombie as I try to make it through the day. There are very few things that can be as aggravating as a cough that just. won't. let. you. sleep. Am I right?

For me, the dreaded night cough can be the cause of so many different CF issues: post nasal drip, lungs that just can't seem to stop clearing mucus, GERD, allergies, and the list goes on. Over the years and with some tips from other CFers I created a mental checklist that I go through while trying to combat my night cough. I figured I would put words on paper because it took me 30 years to come up with this list and thought it may help someone else that is on the brink of sanity because of a CF night cough.

1. Inhaler: Sometimes this does the trick to open my airways and clear out whatever is causing my cough. Sounds too easy, right? Yeah, it usually isn't this simple.
2. Cough Drops: Cough drops do nothing to my CF cough, but sometimes when I start coughing due to CF my throat gets irritated and it turns into a constant cough that isn't so much CF related. Or there are times when my cough is due to a cold and this can help. Again,  it isn't usually this simple, but I always try the easy fixes first. 
3. Snacks: I learned this trick pre-diagnosis when I was a kid and used to sit on the couch at 2am and eat pretzels when my night cough would attack. Something about not being able to cough and swallow food at the same time can be enough to settle a nonstop cough. Weird, but true. Tea may work for some people, but for me it has to be actual food. Between night time cough drops and snacks I am sure my dentist hates me.
4. Pillow Mountain: This is a tip another CFer gave me. Bare with me because it sounds crazy. Sometimes if my cough is due to sinus issues this does the trick. I sit with my legs crossed. Next, I stack as many pillows as I can into a tall pile right in front of my crossed legs. When the tower is tall enough that it comes at least chest level (but higher is better) I can then drape my body (face first) over them. Basically, I sleep sitting up (slightly hunched forward) with my head leaning forward on the pillows to keep the mucus from draining down my throat. The first time someone suggested this to me I thought they were crazy. But you know what? Coughing all night is even crazier and this trick has allowed me many nights of (slightly uncomfortable) sleep which beats a sleepless night any day!
5. Vest: I personally don't think the Vest is the best for of airway clearance for me in the waking hours, but I do it because I am stuck doing nebs anyway. However, the vest can be my night cough miracle cure. When I have tried everything to calm my cough and sleep and am at the brink of going crazy I can usually convince myself to move to the living room with my blankets and pillows. I then stap on my vest and set the time to 60 min (the max), and start shaking. My body is usually so exhausted the second my cough stops I fall asleep despite the shaking of the Vest. It can be so hard to drag yourself out of bed, and it can feel so unappealing to shake violently while coughing and trying to sleep, but this set up has seriously saved my sanity more times than I can count.

Can you tell what I have been doing the last few nights? Yup, coughing and all of the above: #1-5.

I coughed up a rock

Sometimes when you have CF weird shit happens that nobody else would understand!


On Monday, my chest felt tight and I kept complaining to my husband that everything in my chest felt really irritated. I thought it felt like allergies, but given the time of year it seemed doubtful. As the day went on my cough become constant, but it was a deep irritated cough which is not at all my typical CF cough and I started to get worried.


Wednesday, we were driving to the river to spend the afternoon on the beach and thank goodness my husband was driving because my cough was so violent, I had to brace myself against the dashboard and each cough brought a set of stars that danced around my vision. Anyone else get that during a bad coughing fit? Of course, Kaylee is so used to my cough she was chattering away as if nothing was happening!


Wednesday night just as I was drifting off to sleep, I was awoken by a cough that felt as if it were coming from the depth of my core. That sounds dramatic, but seriously, I think it came from a part of my lungs that I never knew existed or at least not in the past 15 years. And the next thing I knew I was coughing so hard, I couldn't breath and started choking, and coughing and hoping I wouldn't pass out. And then, my lungs expelled a small rock!


Okay, of course it wasn't a real rock, but holy crap if I didn't know better I would swear it truly was a rock. And to make this gross story even more disgusting, I will point out the obvious! I expelled a plug that was so old and so dry that I can't help, but wonder if it was created before Kaylee. Because I have never in my life had a plug like that.


The next day I felt 100 x better and my irritated lungs calmed down and my nagging cough disappeared. And when I told my family in the morning Kaylee cheered before asking, "Did you take a picture of it?" This kid knows me too well, because of course I took a picture of it. It is not everyday you cough out a plug that was probably around before you met your husband. That little guy has been with me so long that I had to keep a picture keepsake.


Like I said, sometimes shit happens to people with CF that nobody else could possibly understand!

Plugging Along

You ever know you need to do something, but you just can't muster up the courage to do it? Yeah, that is how I felt about calling the doctor about my CT scan results. I kept telling myself I needed a few more days to mentally prepare for the news. If he told me my lungs were extremely scarred and I had no chance of regaining my lost lung function I wasn't sure I was ready to hear it. I had to roll the idea around my head a little more, process, decide how I would deal with the worst case scenario. Everyone kept asking me if I called, if I got the news and I was embarrassed to say, no over and over again. I guess I am slow to process, but I have found over the years that it may take me a little longer, but I can find my peace and move on without dwelling on the past. Had I called the next day, regardless of the news, I would not have processed and would have unsettled feeling even if the news was positive. Does that even make sense? Who knows, but it seems to work for me!

So to the results. I finally got to a point where I felt at peace with whatever news came my way and called my CF nurse. She was out of town. Figures. The doctor called a few days later while I was out jogging (woohoo!) which meant I missed his call (boo), but luckily he left a message. He started with, "I have good news and I have bad news." Great. He said the good news is...(except I really wanted the bad news first so now I was getting a little nervous and wanted him to hurry up and talk faster), "there is no infection into your lung tissue or pneumonia." Considering I really didn't even consider this an option (based on my symptoms) I didn't really find the news all that good which made me a even more nervous for the bad news.

"The bad news is....well maybe you will consider it good news (then why oh why did you call it cad news?) you seem to have some severe plugging which unlike scarring is reversible". Tears of joy (and I am not an emotional person so you know I felt relieved!!) My little K came running over and said, "Mama hug" while throwing her little arms around my body in a big bear hug. She always knows what I need when I need it. I was told to up my physio and exercise and to try to move out as much crap as possible. He didn't say crap, but whatevs.

Although that was the best case scenario in my head and I was eternally grateful for the news here is what kinda threw me off. I have been 100% compliant for years. YEARS! So how is it all of the sudden my lungs are filling up with so much mucus they are plugging my airways and causing my PFTs to suffer. I kinda figured if you did everything the doctor said your lungs would remain relatively clear. Sure, infections and scarring is inevitable and happens no matter how hard you try to avoid it, but I didn't really think I would fill up with so much mucus that I couldn't breath by doing everything I am told. I have a few theories which I will post once I figure them all out (remember I am slow to process) just in case it may help someone else that finds themselves in a similar position. Hindsight is 20/20 so maybe I can use my hindsight to prevent you from filling up with green slime.

If you have any suggestions for moving plugs I would LOVE to hear them. I am currently:
Vesting 2 hours a day
Using flutter 2x/day
Using a percussor about 30 min a day
Running 5x/week
Pulmozyme 2x/day
HTS 7% 2x/day
Inhaling L-Glutathione 2x/day

Learning Something New

It has been a very long time since I have had a RT do my treatments with me since I usually do home IVs. During this stay I have learned from my RTs a little bit about my unique case of CF. First, I realized I am very productive. I have had several comments from a few RTs along the lines of,

"Wow, you sure coughed up a lot with that treatment"

"That must have been really effective, look how much mucus you got out of your lungs."

"I can't believe how much you coughed out"

Which is cool and all, but if you ask me it seems I am coughing up the same (if not a little less) than usual. Apparently, I am a very productive cyster. Lovely.

Second, I apparently have very thin mucus. RTs like to look in my spit cup and make comments on my mucus and one that comes up is how thin it is. I guess if you are going to have copious amount of mucus it helps for it to be super thin. 

Why is it...

So my gross tolerance is through the roof when it comes to my mucus. I cough into a clear cup when doing my treatments so I can keep tabs on the viscosity, color, texture, and amount of mucus I cough up. I take pics of my big plugs which I know is beyond weird, but they are so darn fascinating. When my husband started looking at old vacation pics I warned him about my plug pics and he proceeded anyway. He just kept staring at the plug pic without even blinking. I wasn't sure what to make of his reaction until he said, "I CANNOT believe that came out of your lungs." My thoughts exactly and the reason for the photograph! Also when I have a cold (like now) I use my sinus rinse three times a day, but get this I plug the drain. Yes, you heard me right I plug the drain so I can see what comes out of my sinuses. Again I look at amount, color, texture, etc. This helps me determine how bad my cold has gotten and if I need to call the doc. Don't worry no sinus mucus pics have ever been taken.

So here is what baffels me. Today in class a kid sneezed before he had time to get a tissue. He had a long string of mucus hanging from his nose while he ran to the back to grab a tissue and cleaned it up and

I

almost

BARFED!!!!!!

OMG talk about gross. Why is it that other people's bodily fluids (mucus)  so much more disgusting than our own?!?

The Problem With Lung Plugs

Yes, I am talking about plugs again. Seems to be the theme of my life at the moment!

So I forgot to mention something the doctor told me that you may find useful to know (or not). I was telling him about my painful spot and that I hacked out a big, fat, juicy plug that I believed to be the sneaky culprit of my pain. He said that it very well may have been the plug that I was whining about. He wasn't as super excited stoked about my plug as I was, but maybe you have to have CF in order to get excited over those types of things. I was still sitting there super proud of myself feeling like I was his best and favorite CF patient for single handedly coughing up a monster plug when he told me some sad news.

He told me the problem with plugs is (I knew at this point I was not going to be grinning ear to ear for long) they cause problems even when they are no longer in the lung. Well, damn I am definitely not smiling anymore. He explained it like this (he is a very good explainer so I hope I can make as much sense as he did) a plug is the build up of mucus in your lungs and it can get hard and very, well, stuck! Unfortunately, this can cause the airway to get stretched out because it needs to accommodate this fat unwelcomed guest. So when a patient so miraculously (I added that little detail, but I could tell he wanted to say it) coughs out a very large and bothersome plug its damage to the airway is still present. It creates some nooks and crannies if you will. And anyone who has ever eaten an english muffin knows that things (like butter or mucus) will pool in those nooks and crannies. I have never liked English muffins and now I think I know why. So even when the plug is gone that airway is MUCH more susceptible to replugging.

So now I am feeling less thrilled about that plug and even slightly regretful for taking the picture of it (well, maybe not because it was pretty crazy to look at) and a little more stressed out about my little stretched out airway. He told me to think about that as a spot I have to give extra attention. I should also call him if it becomes extra painful again and maybe I will needs orals again. So needless to say the problem with plugs is they are the gift that keeps on giving...or something like that!

Public Pool Humiliation

Okay, the title is a little dramatic, but I can be dramatic at times. At least THIS pool humiliation was not as bad as my last public pool humiliation. At least this time I kept me clothes on for goodness sake! I must worn you it is gross and has to do with mucus so if that grosses you out feel free to move along...

This was a particularly busy day at the gym pool and every lane had at least 2 people in it. I chose a lane with the 65 year old man I like to swim next to because we swim at the same pace. I am not sure if it was from the antibiotics or the NAC or maybe it was just one of those days, but my lungs felt amazing. For the first time in a long time my legs gave out before my lungs! So at one point after doing a set of laps I needed to a break to let me poor legs rest. I was at the end of the lane breathing hard trying to catch my breath. Now before I continue I must add a seemingly small, but in fact significant detail. There is a hot tub, spa, and steam room in the same location. The hot tub people are really close to the pool and can basically watch you swim while they relax. This will come into play later. So I am huffing and puffing because even though my legs wore out first, my lungs still got a major workout. Now please note I was not coughing because I am very good at covering my cough. Rather, I was simply breathing hard when all of the sudden a lovely ball of bright green slim came flying out of my body and plopped into the pool right in front of me.

OMG! I have never "lost" a little friend without coughing, it just doesn't happen. I was SO shocked. I wanted to quickly scoop it up because it was quite sizable and bright and DISGUSTING! I tried to scoop once, twice, and three times. The water was sloshing around too much from the other swimmers to get a good grip on that nasty little blob. I could feel the hot tub people burning holes into me as I frantically fruitlessly scooped at the water. Okay, I don't know for a fact that anyone noticed, but I was too humiliated to even look. I started to notice that my lap partner was approaching the wall and he always takes a breather before doing another lap. OMG! He will see this toxic waste I spewed in the pool and what then? I couldn't face the humiliation so I did as any other polite courteous law abiding citizen would do...I swam away and FAST!

I know it gross and I am sure you are all glad that I don't swim in your pool. Heck, I didn't even want to swim with me after I saw my mucus. But if it makes you feel any better I think the chemicals in the pool killed any bacteria and on my return lap I saw that it had pretty much dissipated so no one will go home with a glob in their hair. Regardless, I still feel humiliated and have no idea how many people saw me scrambling after a slimy green blob in the pool. I love swimming, but I sure find ways to humiliate myself in the pool a lot!