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