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.

You Know You Have A Chronic Disease When

A few days ago I went to the eye doctor to get a new prescription for contacts. I was filling out the forms they give you to fill out while you are waiting for your appointment. Easy enough. And then I got to the line that asks if you are on any medication. IF?? Wait, if? I sometimes forget everyone's life doesn't revolve around their medication schedules.

I quickly checked the yes box and went to the next line to fill in my medication list. The line they provided was 4 inches long. 4 inches!!  How do I fit 12 medications on a 4 inch line? Oh right, most people don't take 12 medications and in fact a lot of people can skip that line entirely!

You know you have a chronic illness when you need extra sheets of paper to staple to the back of your intake paperwork to fit your medication list.

Forgetting Enzymes

CFers take enzymes every time food passes our lips. It is so engrained in our daily routine that we often take them without much thought. It is so routine that there are times we may wonder, "wait, did I take my enzymes already?" It happens to me more often now that I have a little one that distracts me during meal time, but let's be real, it happened often enough before kids. Recently, my dad found the perfect solution to this annoying problem at the local pharmacy.

 

His great find is a lid that goes on regular prescription bottles (the translucent orange kind) and keeps track of how much time has passed since the bottle was opened. So let's say you ate breakfast at 7am and you sit down for a snack at 10am, but you can't remember if you already took your enzymes. You can take a peak at the lid and if the bottle says 3 hours have passed since you opened it you know you better get swallowing. And if it says 1 minute, you are good (as long as you didn't accidentally place your napkin on top of your pile of enzymes by accident not that I have ever done this ehem).

The downside is they don't fit on the plastic Zenpep bottles, but if you have CF you probably have a few extra orange bottles on hand (or will once your next shipment of prescriptions arrives) that you can use. These were clearly from Rite Aid, but I assume most major pharmacies have the exact same product. Hopefully this will answer the age old CF question of, "Wait, did anyone see me take my enzymes?"

Missing Meds

It seems that every few months something happens that prevents me from getting my meds. Sometimes I will admit it is partially (or fully) my fault. Like the time I needed HTS, but the pharmacy ran out. I probably should have put in the order before I was really low of HTS vials. Other times I really had no control over the issue like when my insurance suddenly said I was never insured by them despite having the same insurance for almost 10 years!

Well, it has happened again. I started to realize I was running low on my HTS and Albuterol so I called in my meds. I get my meds form an online pharmacy so I have to wait for them to be delivered. The lady said it would be shipped "one day delivery" so I assumed it would arrive the next day. This is new as it has always been a few days and you could get overnight for an extra fee. So when the package didn't arrive the next day I just assumed (that was my first problem right there!) it would arrive the nextfollowing day since I did not pay the extra fee. The next day it didn't arrive and I started to worry. The problem is that the pharmacy is on Eastern time which is a three hour time difference so their office closes at 3 (my time) and mail doesn't arrive until 6 my time. By the time I realized the package did not arrive my pharmacy had been closed for over three hours.

I called the pharmacy first thing this morning. Apparently, my Advair can not be filled until next week so they did not send any of my meds. They were waiting to send them all together. I have about 3 extra Advair left over from pregnancy that I did not need to use, but have no extra Albuterol and HTS. I wish they would have told me because I really did not even need to fill Advair. So my meds are arriving tomorrow (except Advair) which means tonight I will not have any Albuterol or HTS. Sigh. Yes, it was partially my fault. I should have called yesterday so they would have straightened everything out and I would have gotten the shipment today. I should not have assumed the package would arrive. I should have learned my lesson by now. Apparently I am a slow learner.

Night Time Cough

Is there anything more annoying than the CF night time cough?

You are sound asleep snuggled under your covers cuddled up to the one(s) you love, blissfully dreaming, when all of the sudden the coughs violently shake you from your slumber. You are too tired to even open you eyes at first. You long to be back in dreamland so you try your hardest to drift back to sleep. The coughs keep coming, louder, harder. Your loved ones start to stir, you realize you have to pee, and yet you still try to pretend that you will be able to sleep through this thunderstorm in your chest. You puff Albuterol in hopes of calming your lungs enough to pretend it isn't happening and yet it is in all in vain. At this point you are starting to wake. It is not just that your eyes are open, but your bladder, stomach, brain is already starting to perk up. The sleep you were once enjoying is drifting away and you are stuck in limbo: Not fully awake yet, but no longer asleep. You gaze at your loved one sleeping and long to be them, long to dream their dream in their quiet body and yet you are stuck in your loud violent body coughing, coughing, coughing.

You know this will pass and so you wait...and eventually you will sleep again. Your body quiet, your cough temporarily calm, your dreams are back. You can sleep once again, until your lungs start to rumble and it starts all over again.

Zenpep Letdown

A few years ago when my doctors informed me that I could no longer take Ultrase since they would no longer be on the market I was horrified! I LOVED my enzymes with a passion. Probably because I went so long with malabsorption issues. I had to switch to Zenpep right around my wedding day which I wasn't too worried about until my nurse practitioner told me there may be an adjustment period. Now I was even more horrified. Flashbacks of pre-enzyme days were haunting me: lots of gas, bloating, frequent bathroom breaks. I didn't want to spend my wedding day or honeymoon with gastrointestinal issues.

Soon after I started Zenpep (and after the short adjustment window) I fell in love for the second time in my life. I went from thinking I had very little digestive issues to realizing that this, yes this was how nonCFers lived. My CF tummy days were non-existent, no matter what I ate gas was never an issue, and I even gained weight.

Fast forward a few years and I am starting to feel that my love affair with Zenpep is slowly dying. I am not sure if my pancreas has changed or somehow giving birth changed my body (the problems seemed to happen after I gave birth. Not sure if it is causation or just a correlation). I am finding that I am getting more CF tummy days, more stomach sensitivities, and longing for the honeymoon period with my enzymes. I am not experiencing true malabsorption issues so I am not convinced I need to increase my eznymes, but I am no longer living the non-CF tummy dream.