I’m not naïve enough to think that I’m going to wake up tomorrow and find that my life is moving forward with cystic fibrosis in the rearview mirror.
We’re still a little bit away from that moment, but that doesn’t mean I don’t have high expectations for treatment development.
In many ways, my life with CF is all about time management and picking solutions to a number of problems that come up each day. What am I going to eat and how many pills do I need to take? Where am I going with my friends and what time will I be home to do treatments? Should I do treatments before I leave the house, or when I get home even though it will be late? Should I do my overnight tube feeding, or should I try to get a good night of sleep?
It seems like every day is just one decision right after the next.
So, what I thought I should do is let you know what I want, rather what I need to make my life, and the life of everyone else with cystic fibrosis, just a little easier.
I also want YOU to let me know what YOU need to make your life easier with CF –> GunnarsBlog@Esiason.org
If you’re a 16 year-old kid who happened to stumble on this blog post for a class project, pay attention for a little guidance to a potential career path. If you’re an entrepreneur, innovator or a science-y person pay attention, because here are a few million-dollar ideas, that I want you to work on. If you’re someone directly related to cystic fibrosis, pay attention so you can advocate for change.
I need a powdered enzyme
A big part of my day is something incredibly small – the enzyme. It’s a pill that I take to help digest food because my pancreas is basically as useful as a bag of coal pre-steam engine days. I take about 60 of them during the day, so needless to say, they’re pretty important. When I do my overnight G-Tube feeds, I crush up a bunch of these enzymes and pour the resulting powder into my feeding tube pump so that the formula is digested before it even enters my body.
I’ll let you wrap your head around that concept for a moment, because it is certainly NOT the way evolution intended for a human being to eat.
In many ways, it makes me feel like Pablo Escobar, or Jared Leto from Requiem For a Dream, when I’m crushing my enzymes (which is, admittedly, a little weird), but I can tell you that it isn’t quite as romantic as it seems in the movies. Pill crushing is time consuming – it’s another 15 minutes added on before bed – which adds up. Let’s say I do an overnight feed 250 this coming year (which is a low estimate), I will spend 3,750 minutes crushing enzymes and adding them to the pump before finally falling asleep. It’s just another step.
So what do I want?
I want a powdered enzyme that I can add directly to my overnight feed that will not jam my pump. There are a few products out there that sort of get the job done, but that shit jams all the time. I want a powdered enzyme that will allow me to do my overnight feed as quickly as possible. I don’t want to spend 7 hours attached to the damn thing while I sleep either, I want it to be over and done with, in about 5 hours, so I can try to sleep peacefully for the rest of the night. You try sleeping with a tube in your stomach for 7 – 10 hours and let me know what you think, in fact, ask anyone with a feeding tube what he or she thinks about having to do long, time consuming feeds.
Now, I have heard that in some parts of the world powdered enzymes do exist, but the US government (the FDA) in all its wisdom for some reason has not allowed this to happen here. Help us out, one time, Uncle Sam.
I want my day back
Here’s another time management problem. I can spend about three hours every day doing treatments, WHEN I’M HEALTHY. That’s every single day, of every single year for the rest of the foreseeable future. I’m not even counting feeding tube time, traveling to see the doctor, trips to the pharmacy, sorting through pills, taking pills, cleaning my equipment or anything else. I’m talking about actively doing my treatments.
Since we’ve progressed with research into the disease, it seems like we just add on to a patient’s burden. Here’s a new med, let’s just add it to the mix of 5 or 6 existing meds that you already take – now you have 7, good luck!
While that is great, and I’m incredibly thankful for it, it makes the whole day longer AND SHORTER at the same time. I find myself spending more and more time doing treatments and less and less time doing the things that I like. I have discovered that I can be incredibly productive with my work responsibilities during treatment time, after all, I am glued to my seat, so I don’t have much of an excuse not to answer emails or get electronic tasks done, but I can’t be physically productive while I’m sitting here sucking down medicine.
We’re not even talking about what it’s like when I’m sick. I can spend four or five hours doing treatments plus another couple hours attached to the IV pole.
I want my day back. I want someone to figure out how to compact my treatments into a half the time it takes me now, while being just as effective in combating the disease.
I want to be able to make a decision without having to contemplate the logistics of having to complete an hour’s worth of medicine before falling asleep.
I want a full night of sleep
A good night of sleep is rare for me these days, which is odd, because by the time I’m ready to fall asleep I’m totally worn out. There hasn’t been a day in the past five years when I haven’t gotten ready for bed with my eyes closing even before I turn the lights off. The ware and tear and my body everyday is a lot. Ask anyone with CF and he or she will tell you the same thing. The constant fight against infection is draining.
Despite the exhaustion, though, I rarely make it through the night without stirring in my sleeping. Granted I do have to turn off the feeding tube pump in the middle of the night, (that isn’t so bad as long as I’m only attached to it for a few hours – see my reasoning for that above), but I’m stirring for other reasons: I’m coughing, I’m sore, I’m sucking wind through a plug in my lung, I’m having a hospital nightmare, etc. There are too many reasons to list.
Anyone who has ever been sick, whether it is with chronic illness or the common cold, has been told to rest. Yeah, okay, but how? It’s almost like the actual process of sleep has been neglected. What strategies can I use to rest my body for the endless onslaught it will encounter the next day? How do I get rid of my hospital nightmares? How can I make sure I’m not coughing through the night?
I want to cut down on the mucus
If you’ve read my “spitting” blog then you know exactly where I am going with this. I cough up a shit ton of green stuff. Some call it bacteria; I chose to call it “goopies” when I was little; you can call it whatever you want. It smells, it tastes bad, it looks gross and there’s a lot of it. It’s great that I can get it all to come out. Better out than in, as the saying goes, but it certainly takes its toll on me physically. The hundreds of violent coughs each day have made my abs and core are rock solid from all the muscle contractions it takes to bring up the mucus. I guess it’s a hidden blessing that I will always have a six-pack, but my cough has to get better eventually, right?
Imagine every morning someone pouring a two-liter bottle of Coke into each lung, and then trying to breathe on top of it, that’s what it is like when I wake up. I want that feeling to go away. Even if we can get it down to 20 oz. bottle of Coke in each lung, I’d take that. I want more room for oxygen, which means more room for strength, energy and forward thinking. Oxygen gives us everything. I want more of it.
Figure out how to do that and you will make a lot of people very happy.
OH, YEAH. GET ALL OF US A NEW ANTIBIOTIC TO USE!!!!!
I think I can speak for a few thousand of us when I say, I’d like to eradicate the Pseudomonas aeruginosa living in our lungs sooner rather than later.
I think these objectives are reasonable goals for the near-term. I’m not expecting a cure in the next five minutes, but I am anticipating that my life will get just a little easier, because I know we have the technology and the money to do it. It’s time to fund the science world (you know who you are), and give results to people living with cystic fibrosis, NOW.
Not in 5 years, not in 10 years, not in 30 years (when I’m f*cking 55 years old, married, with three kids in college and looking towards retirement), NOW.
We talk about a cure coming in the distant future, but we need to make sure people are living, breathing and succeeding when it arrives.
If anything, do it for Harambe (cliché 2016 reference in a New Years blog post).
Here’s my 2016 reading list!
The Alchemist – Paulo Coelho
Among Heroes – Brandon Webb
The Bedford Boys – Alex Kershaw
The Big Short – Michael Lewis
The Boys in the Boat – Daniel James Brown
Catch-22 – Joseph Heller
Dispatches – Michael Herr
Endurance: Shackleton’s Incredible Voyage – Alfred Lansing
Exceptional – Dick Cheney and Liz Cheney
Extreme Ownership – Jocko Willink and Leif Babin
Hundred Days: The End of The Great War – Nick Llyod
Killing the Rising Sun – Bill O’Reilly and Martin Dugard
The Liar’s Ball – Vicky Ward
Liar’s Poker – Michael Lewis
Outliers: The Story of Success – Malcolm Gladwell
Red Notice – Bill Browder
Red Platoon – Clinton Romesha
River of Doubt – Candice Millard
Robert’s Ridge – Malcolm MacPherson
Slaughterhouse-five – Kurt Vonnegut
The Things They Carried – Tim O’Brien
Thomas Jefferson and the Tripoli Pirates – Brian Kilmeade
We Were Soldiers Once… and Young – Lt. Gen. Harold G. Moore and Joseph L. Galloway
Win Forever – Pete Carroll