GERD is the word

GERD or Gastroesophageal Reflux Disease (chronic acid reflux) is pretty common in people with CF. I don't have an official diagnosis of GERD, but I think that's just a technicality.

I can remember being in elementary school and complaining to my mom about "yucky burps" and being given antacids. I'm probably one of the few third graders that went to the medicine cabinet and took TUMS at will. My relationship with those heavenly mint discs continued well into my 20s when my CF doctor started me on a daily regimen of omeprazole which is a protein pump inhibitor. Taking these on a daily basis was a huge life changer, I no longer had stashes of TUMS in every conceivable location and I also found that my digestive enzymes worked much better because they weren't doing battle with excess stomach acid. I was even able to decrease the number of enzymes that I took at each meal. When you consider that those little suckers cost about $2 each, the fewer needed is better.

Unfortunately over the last few months I've noticed that I've started to get heartburn fairly frequently, so it seems that my omeprazole isn't working like it used to. This weekend was especially bad. Friday night I fell asleep on the couch and a couple of hours later, when I woke up to go to my bed I noticed right away that I had severe reflux. It was so bad that it was making it's way to my mouth and causing me to cough and retch. I ended up going back to the couch to try and sleep sitting up. Eventually it settled enough that I could lay down propped up and was able to catch another couple hours. Heartburn continued through the day and increased every time I ate. I also had pretty bad tightness in my chest, like there was a vise grip squeezing my heart & lungs. I contemplated going to the ER, but kept putting it off, not wanting to overreact to a bit of heartburn. Eventually it subsided a bit, and through Sunday it only acted up after I ate. So here I sit at work on Monday and it's still happening. I put a call in to my CF clinic, so I'm just waiting to hear back from them. Hopefully there's something I can do to get me through the next few weeks until my clinic appointment. But until then I'm taking my old friends every where I go.

Sugar Sugar

Having grown up in the 80s and 90s when there wasn’t as much known about CF and people with it weren’t living as long, the priority was gaining/keeping on weight. My whole childhood my parents were told to get me to eat as many calories as possible. They were told to keep candy in the house at all times so that I could eat it any time. Based on what we know today this sounds pretty terrible, but that’s just how things were done. Fast forward some years and I’ve spent the majority of my life eating anything & everything that I want. Unfortunately, I also happen to have a very strong sweet tooth and very little will power.

Blood tests are a regular part of clinic visits. They check vitamin levels, liver functions, and sugars, among other things. The last year or so, my sugars have been running at the high-normal end, so this summer my doctor had me do a fasting 2-hr blood glucose test. This entails a blood draw, drinking an orange flavored, super sugary drink, then drawing blood again at one hour & two hours to see how the sugar is absorbed into the body. I was able to find out my results during my visit that day as I had clinic scheduled at the same time. Well, my doctor read the results and said that I was officially at the high end of pre-diabetic. Cystic Fibrosis Related Diabetes (CFRD) is different from Type 1 or Type 2, but can be treated with insulin. Since I didn’t have diabetes just yet, I met with the nutritionist and went over how to control my sugar levels with diet. Ugh.

I had to give up all candy & soda and start making sure that every 2-3 hours I ate a balance of protein and carbs. My body still needs sugar, since my levels also tend to get really low, it just has to be the good kind. Eating all of the time wasn’t a problem since I pretty much snack at my desk all day long anyway, but having to cut out the junk food was awful. I craved it so bad. It doesn’t really help that the kitchen at work is stocked with candy & we have a soda fountain. They sat there and stared me down every day at lunch. And I have to say there were a couple of days that I went and stared longingly at the pantry shelves and had to talk myself out of having “just one”. I was counting the days that I’d gone without junk food and congratulating myself every day on a job well done. After about 7 days it started to get easier and I found some substitute things to eat that sort of satisfied my sugar needs.

At about this time I got my test results in the mail and come to find out that my doctor read the 1 hour test as my final instead of the 2 hour test, so my results were that I’m actually high-normal, and not even pre-diabetic at all (yet). Well I tried to convince myself to continue eating healthy, but my aforementioned low will power took over and I ended up saying a giant fuck it and started back on the candy & soda. All of it.

I'm making sure to drink at least 4 liters
of water a day, along with making
good decisions on my snacks.

Now it’s a new year and I’ve decided that I really need to get back on the no junk wagon. I’m pretty sure my body will thank me in the long run, but it’s still not easy. A little easier since it’s my decision and not forced upon me. I really don’t do well with being told that I have to do something, never have. 

I’m drinking a literal gallon of water every day and substituting all of my usual candy with fruits, veggies, nuts, cheese, and popcorn. I still have bad days where I want nothing more than to drink a root beer and stuff handfuls of Cracker Jack in my mouth, but I know that if I give in I’ll end up telling myself that I can have one thing every day and then it will spiral out of control again. So for now I eat with my back to the candy-filled pantry and pretend that my sugar snap peas are of the sour patch variety.

Pills, Pills, and More Pills (plus a bunch of other stuff)

 This photo represents the typical amount of pills that I take in a day. Included are my vitamins, acid reducer, and pancreatic enzymes. I also threw in something for headaches since I end up taking that on most days :/

My enzymes (specifically Zenpep 15 for any curious fellow CFers) are the bulk of this since I have to take them whenever I eat. How many I take depends on how much fat is in what I'm eating, but on average I do 2-4 with a meal or snack. The enzymes have improved a lot since I was a kid, at one point I was taking 7 with every meal. My acid reducer also helps increase the functionality of the enzymes as well as let me get through the day without crazy heartburn. TUMS were my best friends for several years, now omeprazole is.

Since my pancreas doesn't work properly to pull the nutrients out of my food I need to take additional vitamins so I can make sure that I'm getting enough. Low vitamin levels are pretty common in CF. There are some vitamin brands out there like AquADEK, that combine a bunch of them into one pill, but I've found that those come back to haunt me (and anyone around me) all day long so I prefer to take them individually.

In addition to pills I also have to use a nasal spray to help keep the inflammation in my sinuses down, a sinus rinse to keep them gunk free, and a saline solution that I inhale using a nebulizer to help loosen the mucus in my lungs. Oh and I almost forgot about my bronchodilator inhaler, I use this prior to running/exercise to help open up my airways (or if I'm just having a bad, wheezy, lung day).

I'm no stranger to antibiotics either, as soon as I know a respiratory infection has started I'm on the phone with my doc to get a round to help clear it up. I don't love the idea of taking antibiotics so often, but I do love being able to breathe.

I know this seems like a lot and slightly overwhelming, but keep in mind that I am on very few medications compared to most CFers out there. Maybe one day I'll have to give up an entire closet to my medicine cabinet, but for now a couple of baskets stashed in the kitchen and bathroom will do.


**I have tried using essential oils instead of antibiotics (my last employer sold them, so I got well versed in all that I needed to try), but I found that they didn't quite work like the miracle cure that they were being sold as. I do still use them, but more as a supplement to what I already do.