I get holiday breaks, so why can't CF?

       Kids stare, either in awe, shock, or even fear, as I hook up tubes to a funny looking blue thing strapped onto me. They scurry when I smile at them, embarrassed. As I begin to vibrate loudly and awkwardly, I feel as though I am creating a scene, causing people to speak louder in their conversations, or get distracted by the unfamiliar machine. Cousins, who I only talk to once or twice a year, try to make me feel better by making very awkward small talk, asking the same questions they do every year about my treatment. "So how many times do you have to do this?" or "How long does it take?" and even "Does it feel funny? I wanna try!" I do my best to keep my patience and explain, despite the fact that, especially at family events, like Christmas at my grandma's, I like to be alone during my treatments. It's hard to talk with a mouth piece in, and I don't like taking it out every 2 seconds to reply. Conversations during my treatment usually consist of me yelling and constantly asking the other person to repeat themselves because the machine is too loud.

       While my siblings ran inside my grandma's house with their cool new toys and candy, I waddled in after them dragging my machine behind me. I just want to have a normal Christmas, uninterrupted by the burdens of CF. Earlier that morning, it was hard to indulge in the joyous festivities of opening gifts, searching through the goodies hidden throughout a stocking stuffed with varieties of chocolates and sweets, like precious pearls in piles of sand. My lungs were relentless with coughing, dry heaves, and soreness. I didn't even get to sit through Christmas mass, surrounded by beautiful decorations that my mom and sister helped set up, without having to step outside to get a drink and release a fountain of who-knows-what into the toilet from my mouth.

       Cystic Fibrosis doesn't take holiday breaks unfortunately. While I'm sitting at home, excited for the upcoming holidays, CF lurks, ready to strike at the most inopportune times. Not even unexpectedly, either. For example, I know I have to do treatments. When it's the weekend or breaks from school, it's ideal to do 4 treatments a day. This interrupts so many things, including hanging out with friends and family for extended periods of time. I also don't get to sleep in as much as others, if at all. My treatments also postpone events, such as dinner or opening gifts, and we all know how impatient we get after sitting around for 1/2 hour waiting to discover what can possibly be wrapped in that shiny silver paper with your name on it. Doing treatments also prevents me from helping decorate and clean, which, as crazy as it might sound, kind of sucks. I mean, I don't mind getting out of cleaning, but decorating is always so fun, and if it meant not having CF, I'd clean the whole house by myself! In the winter, everyone gets sick. And I mean everyone. At one point or another, pretty much everyone in my house gets a cold, which is a warzone for germs and bacteria in my body. Antibiotics, medicines, and the good kind of germs/bacteria do their best to fight off any kind of sickness, but it's unavoidable. This creates a wonderful time of constant coughing, congestion, and kleenex. And I'm always tired. Who wants to be tired and sick at Christmas time?! It prevents me from contact with family members and it just drags me down.
     

       The holidays are supposed to be a great time, and they are! Unfortunately they're also a time to help me remember that even in the best of times, no matter how loving my family, no matter how expensive the gift, no matter what kind of food is on the table, I will always have this disease. CF doesn't take holiday breaks, so I guess I can't take CF breaks.

I like parties, but not pity parties

Recently, I went to the school nurse to lie down because I was feeling sick. I was coughing, I was tired, and I just needed to sleep. Luckily, one of the first things the nurses offer when you tell them you don't feel well is to lie down for a bit. Most students are only given 20-30 minutes to lie down, but due to my past history, and the fact that I have CF, I was given the whole hour to nap. I don't take advantage of my CF much, or at least I try not to, but this is one of those things that I was glad to take advantage of.

After I was well rested, I told the nurse I was ready to go back, and she gave me my pass book. Before I left, however, she said something that bothered me from the moment I heard it. "We're worried about you, Jeph."
Is that supposed to be a good thing? If so, I definitely did not interpret it that way. This seemingly harmless, minute comment rubbed me the wrong way.

Having someone worry about me implies that there is something wrong with me. Sure, I have CF, but I'm healthy right now. Just because I need to come in and lie down does not mean I'm sick and am going to be admitted to the hospital. My intentions while going to the nurses office that morning were to take a short nap, not to have a pity party thrown for me because I'm that poor boy who struggled at the end of last year and will continue to struggle because I have this horrible disease. That is not me. I'm a normal kid who gets tired because he has rehearsal from 2:30-9:00 and wants to sleep an extra hour. I struggle to pay attention in class because I can't hold my head up or I'm coughing. I don't go to the nurse to wallow in self pity. I don't do that, but if I did, I would do that in my room by myself.

I did not react to the comment negatively. Instead, I just said "thanks" and went on my way. Needless to say, however, that comment stuck with me for the rest of the day and still tugs at the back of my mind. Is this how she sees me normally? As a sick kid? Does she really worry about me, or only when I come in for things like this? Do other people worry about me like this, and see me as that sick kid? I wish I knew the answers to these questions. Every day I wonder these things. Even before the nurse thought she was being kind by telling me she worried about me, I wondered if people did things for me out of pity. For example, do they hang out and talk to me extensively because they read this blog and want to make my life better? Do people just have a mindset that because I have a terminal illness, I will die before them and therefore they must make my life so glorious and wonderful?
If I say I'm hungry, do people offer me part of their burger because they know I need the extra calories? Or do they genuinely not want it? When I cough, do people ignore it because they know I can't help it? Or do they see it as some other kid with a cold?

"We're worried about you Jeph" constantly plays in my head. Who is? The two nurses? My friends? Family? Everyone?
Yeah, I like parties. But I don't want to have this one, big pity party thrown for me by everyone. It is nice to have sympathy from people, yes, but when people over do it, it makes me feel bad and wrong in a sense. CF is something I can't help; it's not my choice to have it or not. I try to take care of myself and I work hard to hide it from others, because I don't want to attract attention and pity from it. That's just dumb. It's one of those things I can't explain. Just another one of those things about CF.

Friends and CF

When you have a life-threatening, chronic illness such as Cystic Fibrosis, it's pretty hard to make friends. After all, you're coughing all the time, you're really skinny, you're limited to your physical abilities, you're gone a lot for doctor appointments and hospitalizations, you have a ton of medicines to take, you have to be home early for stuff to do treatments and what-not. The list goes on, and on, and on.

Back in elementary school, I had plenty of friends, just like everyone else. I had a really great friend, Andrew, who accepted me for me, even with my CF. He sort of enjoyed watching me do my treatments it seemed. We had a ton of sleepovers, we hung out all the time, it was great. Unfortunately, middle school happened and by the time we entered high school we were no longer on speaking terms. It wasn't the CF, but other reasons.

When I looked around at the world around me after that, I realized I had no other super close friends. Sure, I had friends, but none that really knew about my CF, and none that I would ever hang out with outside of school. I feel like my cystic fibrosis in middle school had a part to play in this. I was hospitalized a few times during middle school, leaving me out of the loop of all of the great things and opportunities that happened. I'm sure you all remember how middle school was: everyone started joining different groups and formed cliques and everything changed. I wasn't really there for the change. When I was, it was too late; people had their groups and I was that weird kid who was gone a lot and had to leave early. Kids are mean.
So I definitely missed out on the whole getting new friends in middle school. Again, I had friends without a doubt- joining theatre was probably one of the best decisions I've made- however, there weren't and still aren't many guys in theatre, and in middle school, if you were friends with girls, then rumors started. For some reason, I find it hard to connect with most guys anyway. Whatever.

Being in high school has changed me big time. Now, I pretty much only decide my friends based on my CF. Last spring, during lent, my sister Anna wrote me a letter. In it, she wrote, "I never allowed myself to have much of a social life because I was afraid of having CF and of what others might think of me, but you don’t let it stop you. If anything, you let it determine who is worthy enough to be your friend; if they can handle the CF, they are worthy. That is truly remarkable, and I wish I had been like you when I was younger." In middle school, I was afraid of other people's thoughts of me and my CF just like Anna, but something happened and I don't know what, but I started to change. If people can't handle my CF, then screw them, it's not worth talking to them. That's pretty much my outlook on life.
In all seriousness though, I think it was JC. Anna and JC were together long before I entered high school but I didn't see it until then: JC cared and loved for Anna more than anything in the world. Her health was his number 1 priority. He asked questions at appointments, he tried the vest and he put a fake PICC line in to see what it was like (it sucks, by the way). I remember tweeting something like "I need someone to take care of me like JC does with Anna" or something similar. Anna texted me later saying how she teared up and she told JC about that. 

I think that's when I really started to form my friend group around my CF.  I needed people who would understand that I just need to sleep sometimes, or I need to take a break. I need people who are willing to take me home early so I can do a treatment. I know it's not the most convenient thing- it's not for me, either- but I started looking for the kind of people that could help. And I found a good bunch. 
A lot of people in theatre know about it and understand. I cough backstage sometimes, and I try to subdue it. Sometimes I'll step into the hall so the noise doesn't carry onstage, and I'm very thankful no one says in anything. Sometimes I just have cough attacks, and after a bit I'll be okay. No, I'm not gonna die, so don't say that. Yes, I might cough up a lung. But don't say that, either.
In some ways, I sort of regret making friends based on my CF, because it really limited me to who was there and who wasn't. Sometimes I wish I could go back, not tell anyone about it, and be in a "group" like everyone else is. A group who goes to each others houses all the time and does stuff every weekend. But I can't, so I'm stuck being picky with friends. 

My friend Billy really took me under his wing this past school year. Unfortunately, he was a senior and just graduated, so he won't be there anymore. At least, not in person. Billy was the one who comforted me when Anna first started getting pretty bad this last May. He showed up to her visitation and was always there to talk.  Billy gave me rides everywhere and we really connected. I could go on and on about this guy, but he is just one example of the kinds of friends I need.

My other closest friend is my girlfriend, Noelle. Before I got super serious with Noelle, I told her about my CF and everything it entails. I want people to know what they're getting into, and to give them an opportunity to escape. Noelle stayed, and thank goodness she did. In the past 9 months that we've been together, I've gained 30 pounds. She helps me remember to do my feedings and everything. Night time gets pretty crazy and jumbled and I usually forget to do everything, what with homework during the school year, me just being tired, who knows. Doing my feedings are not the first thing on my mind. I'm going to be honest, before last November, I rarely did my feedings. I was barely 130 pounds for 6 months, and now that I remember to do my feedings I've gained 30 pounds. That's amazing.
Noelle also wakes me up bright and early in the summer so I can get 3, maybe 4 treatments in everyday. Partly it's because she's already up for tennis, but another part is that she just cares and understands so much. So many people have commented on how I look really healthy and a lot bigger, and I credit that to Noelle for pretty much forcing me to do everything. 
Noelle also has tried the vest, but not the whole thing...yet! She's done a few different settings just to get the feel of it. It always makes me feel good when others, not necessarily my girlfriend, want to know what it's like and take the extra step to remember, help out, or try things related to my CF.

Noelle doing a treatment

I still don't have any close friends. Not close enough to hang out with outside of school. I think I missed my opportunity to get really close to anyone and make good connections. Don't get me wrong, I have a ton of great friends and I love them all, but none that I can call my "best friend" or go to text regularly to update them about doctor appointments or anything. It's kind of hard to make friends with my CF. I can't do sleepovers unless I bring my huge vest machine over, I cough all the time, and I'm just pretty high maintenance. It's hard, but with CF, what isn't?

My New Attachment

So basically I'm like a Nerf gun that you can add attachments to that make it cooler and more efficient and what-not. But I'm a human. And I'm not sure if my attachments make me cooler, but I like to think they do. Years ago, in 1st grade, I got my first attachment: my feeding tube. My feeding tube helps me gain weight, because of course, CF makes it hard to gain weight just by eating. Maybe one day I'll write an entire blog about that, but for those of you new to this CF thing, yes, I can, and definitely do, eat normal food through my mouth. My feeding tube is a supplemental feeding overnight.

Anyway. I had another surgery a year later, which was an acid reflux bypass sort of thing. Not totally sure why I got it done or anything, but it's not visible from the outside, so I wouldn't call it an attachment, more like an enhancer to the gun that is myself.  Recently, as in today, August 22nd, I got a new attachment that will be much more efficient and enhancing to my health. It's called a 'portacath', or port, for short. It's basically a permanent IV, more specifically a PICC line, for those of you who are familiar with the term PICC line, but really it's in its own class of IV antibiotic treatments.
I had heard about ports about a year or two ago, and was completely against it. I'm not sure if it was brought up just in casual conversation or if they were talking about me getting one eventually, but I do remember being scared and uncomfortable with the thought of it. This is what I was told initially: It's an IV thats under your skin 24/7 for the rest of my life.
Ummmm no thanks. Just the thought of having something under my skin for the rest of my life makes me feel so uncomfortable, and even now that I have it, it's still kind of a weird thought. I like to think of it like it's a tracker they use in the Hunger Games. With CF, you need to learn how to have a little fun with it. With life, you need to learn how to have fun! Anyway, all I was told was that it was more or less a forever IV and then the subject was changed. Then, a few months ago, in May, I was in the hospital and was told that my PICC line that I got in was very hard to place and that we need to start thinking about getting a port. They explained the benefits of a port and were much more specific about details and what it would entail. I was pretty annoyed that they put the PICC in my arm in the first place during this hospitalization for various reasons, one of them being it would mean I was one step closer to needing a port. Turns out I was a lot closer than I thought.
Cystic Fibrosis is funny that way.
You think it's just something small and it snowballs into something huge and unexpected.
But now I'm just rambling.
So I was discharged from the hospital with a PICC and a mindset of getting this port placed. I went into the doctors office a month later, got some more information, and eventually scheduled my consultation for the surgery. I was very excited to get the port now.
When I met my surgeon, I was even more confident and eager to get it. He told me I would have virtually no restrictions, with the exception of the first few weeks after the surgery to recover. I can play baseball, shower, anything!

My Port. Gotta keep it bandaged up for a few days

I have a small bump on the right side of my abdomen now where the port is underneath my skin. It's sore, but thats temporary. Now, whenever I get sick and need to go into the hospital, I won't need to get any sort of IV or PICC line; they'll just "access" the port (pretty much just stick a needle into the site and hook up the medicine) and my hospital stays could potentially drop in duration because I'll be able to get antibiotics right away and won't need to wait for the 'go ahead' for a PICC line or anything.

I'll probably need to use my port at home after hospital stays, just like I did with PICC lines. When I do need to use it, I will not be able to be active, again, just like with the PICCs. I'm not sure what it will be like, if I'll have some sort of tube hooked up to it or what, because personally, I don't see why I can't be active if I'm not hooked up directly to it, but I guess I'll find out.
Every month I will need a home nurse to come and flush my port,  just to prevent any clogging or infection. It sounds like they'll just come to my house, stick a syringe in it, flush it, and leave. No big procedure, I can be active that day and the following days, no big deal. Just a precaution.
It hurts to do treatments with it right now. It's pretty much always sore and the pressure from the treatment doesn't help, but I have a foam donut thing that I use, similar to one I used when I got my feeding tube placed. It shouldn't last long but I do need to take frequent breaks during my treatment just to let it rest.


So yeah, this new attachment to my gun is a pretty good one. Hopefully it'll help in the war against CF. It'll be much more efficient and it will help me rebound from sickness faster and I'll be on my way. I was hesitant at first, but now that it's in me, there's not much I can do, so I guess I'll give it a shot and see what happens. 

Just a little Pre-Op selfie

Staring is caring

First off, I'd like to say, welcome to my blog. I feel like everyone has one at one point of their life, and it's my turn to get one. So just to forewarn you, these first few blogs may not be the best, but I'm sure I'll get the hang of this whole blog thing.

Anyway, I didn't start this to talk about how I think my blogging career will be. I wanted to talk about my CF, how it affects me, and what it's like in the life and mind and eyes and all that stuff of a person who carries the burden that is Cystic Fibrosis. Since it is summer, I'll start with what it's like to have CF in the summer.

It sucks.

I have a feeding tube, which is necessary for my weight gain, however, it's not the most attractive or normal thing you might see. So, naturally, when I go to the beach or pool, or even just play outside shirtless, people stare. I used to be offended and stare at them back until they made eye contact and looked away guiltily. I'm not gonna lie, I still do sometimes, if I'm annoyed or having a bad day or whatever. But as I've matured, I've learned, mainly through my sister Anna, my CF buddy, that people aren't staring to be rude. They're just curious. Humans are naturally curious, yet when they see something they're curious about, they're afraid to ask because they want to avoid offending the person or any awkwardness that might occur. But really, they're offending me and making it awkward by NOT asking, and just staring. When people (usually kids, innocent to the sensitive side of the world) asked about it, I blew them off, or gave them a sarcastic answer. My favorite was "I can inflate myself like a beach ball" because it sort of looks like a plug that you might find in a beach ball. I've started to become more open to informing others about CF and my life with it, and again, I think Anna had some say in that. Indirectly, of course. Now when people ask, sometimes I'll give a funny answer, but then I'll tell them what it's for. I don't tell them about my disease necessarily, but that I use it for weight gain because I have trouble keeping on weight by myself. They'll usually just say "oh" and go back to their business (usually it's when I'm in line for the diving board; when they have time to talk and not interrupt my life).
It's hard to walk around with people staring at you all the time. It makes you uncomfortable. Luckily, I've gained confidence and weight, so I'm not so insecure about people staring. I've learned that really, people are just curious, so they stare. Staring is caring. And people, if you see me, or anyone, and have questions about their appearance, be sensitive, but don't be afraid to ask. They're aware of their situation and wouldn't be out in public if they didn't want anyone asking.

My feeding tube

Another part of summer with CF that sucks is doing my treatments. Treatments suck usually because they take time out of my day and force me to sit down for 1/2 hour while I shake. For one, it gets tiring after about 15 minutes! And when you're having a great time with friends or family outside, interrupting your precious summer does not seem like an attractive idea. Usually we'll have to plan events around when I can do a treatment, even if it means me bringing my vest machine to wherever we're going. This then causes people to stare once again if it's in public, and for some reason I'm even more insecure about people staring at me while doing my treatment. Maybe because I can't talk during it, so I don't have the opportunity to explain it, or because I've become to associate my treatments with personal, quiet, (well, as quiet as it can be with my machine shaking like that) Jeph time, and when people stare or talk to me or interrupt it in anyway, I get kind of annoyed. I can't sleep in all that much during the summer, because it's ideal for me to get 4 treatments in a day, and if not 4, then 3. I have to space them out 4 hours apart from each other, so in order to do that, I have to wake up at 9 at the latest, because my last treatment of the day works out to be 12 hours apart from my first one, and doing a treatment past 9:30 is not ideal. Especially since I have to stay up later anyway because I have to hook up my feedings and do all my insulin and take my medicines before bed, which is an added stress. That sucks when I'm exhausted from a fun, tiring summer day, and have to do all that. It's not easy. Or fun


As much as I try to keep my lungs healthy and in tip-top shape, it's not easy. And when your lungs aren't in their prime during the summer, your summer gets less fun. Any activity is hard. I can barely run to second base in baseball without having to call time to pretend to tie my shoe so I can catch my breath. Or when I'm swimming, I can't dive down for the dive sticks at the bottom of the pool as fast as the others, so usually I can't race them, which was always fun. Just more motivation to keep my lungs in shape, I guess.

CF Sucks. Especially in the summer. The treatments, not sleeping in, and most of all, the staring. It all adds up to be one big, awkward, annoying zit. CF is never fun, and it's one of those things you can't just blow off for one day, or forget about, because it will come back and bite you in the butt. Hard. I've been learning how to deal with it all, one aspect of it at a time. But there's a lot, and I'm sure it'll take a while.