My best friends are better than your best friends

I know that everyone thinks that they have the best friends in the whole world, but I really do. My best friends are two of the greatest people I know. I am so blessed to have them in my life. They never fail to bring a smile to my face. I have no idea where I would be without them. 

Tonight, we were finally all reunited after not seeing each other for months. Kaitlyn had visited me in the hospital, and Kaitlyn and Moriah went to a concert in Tally a couple of months ago, but the three of us hadn’t been together as a group since summer. Moriah came home today and we made plans to go to dinner tonight. I was also informed that there was going to be a surprise. Me and my friends love surprises. Its kind of our thing. My mind was scrambling to figure out what the surprise could possibly be. Knowing my friends, it could’ve been anything. But the actual surprise was something I never expected.

They were going to wait to tell me at dinner but they were just bursting with excitement. It was pretty adorable. So when I got into the car, they both turned to me and said: 

We are getting tattoos for you.

Not going to lie, my mind blanked for like a split second. I was like, “Wait, what?”. Then they started to tell me how they were going to get “With Every Breath” tattoos in support of me. I just started crying. It was one of the sweetest, kindest, most thoughtful and heartwarming things any one has ever done for me. The fact that they cared about me so much to get something permanent on their bodies meant the world to me. I can’t even explain what I was feeling. 

After we all finally stopped crying, we went to dinner. Then we headed over to the tattoo place. It was so exciting. Of course, I made sure that they had both thought about it and were 100% positive they wanted it (they did). The tattoo artist was really nice and the place was really clean (woo!). It was really one of the greatest nights of my life. The love that I have for these two girls is unbelievable, and I am so grateful to be loved by them. 

 

[Top to bottom: Kaitlyn, me, and Scotty the Tattoo Artist; Kaitlyn’s tattoo (collarbone-left side); Moriah’s tattoo (rib cage-left side)]

“Life ain’t always what you think it ought to be”

Sorry it has been a few days since my last post! My computer didn’t have internet until about an hour ago and my dad’s laptop wouldn’t let me access the blog. So, boo! A lot has happened the past few days, so brace yourselves. This is going to be a looonnnggg post.

As you remember (if you don’t, it is literally the next post down), I had a bronchoscopy on Thursday. It went swimmingly, thanks for asking. They wouldn’t let my dad record me going under anesthesia, but he did get a short clip of me waking up. I’ll be sure to post it tomorrow. I’m just warning you now: I look totally hot in this video. Like, super-model hot. If you’ve never been under anesthesia, then you are missing out on a really unique experience (Note: going under anesthesia is always a risk and not something that should be done nonchalantly. Do NOT go under anesthesia unless it is necessary). You know how when you sleep and you wake up, you can usually feel like some there has been some passage of time? You can usually guess how long you’ve been asleep and your body feels like its been rested. You probably even had a dream. Well, anesthesia is nothing like that. You don’t slowly fade into sleep. They push it through your IV and in less than 10 seconds you’re knocked out. My dad’s take: “They put it in and then you were just kinda like ‘Klunk! Out.'” It’s like your mind just completely shuts off. You don’t dream and it is not a refreshing sleep. You don’t wake up all bright eyed and bushy-tailed. Waking up sucks. Even though you go to sleep instantly, it takes FOREVER to wake up. You slowly become conscious of sounds, then feelings. It’s hard to make sense of reality and you fade in and out. You’re not really sure if you are dreaming or imagining things. Your brain is in this really thick fog. It is honestly one of the worst feelings in the world. And my throat was killing me. I mean, what do you expect when they shove a tube down your throat and start poking around? You always open your eyes last. My mind always works so hard. It takes so much more effort than you think it would. I’m such a loser too. The first thing I always do when I am able to focus is look for the clock. I always want to know what time it is and how long I’ve been out for. I think it is because I’m a control freak and the whole anesthesia-thing takes away my control. So by knowing the time, I gain back some of that control. But that’s just speculation. Maybe I just have a thing for clocks. I also like to move my hands, then my feet. Your body kinda feels like it is full of lead. You just feel really heavy, like you would sink to the bottom if dropped in a pool (Well, you would probably sink anyway because you wouldn’t be aware enough to swim, but that’s beside the point). Once I was finally conscious enough to start talking and drinking water and holding my head up and normal stuff like that, they took me back to our room, where Logan was waiting to laugh at me in my doped up state. I mostly ignored her, but she did get a nice view of my butt from the opening in the back of the hospital gown (sexy hospital couture, I know), so we’re even. I then ate some carrots and proceeded to talk some more non-sense as the rest of the anesthesia wore off. I eventually fell asleep and took a nap for a few hours. When I awoke from my restful slumber, I felt much better and ate my entire dinner (which is saying something because hospital food= yuck). My throat still felt awful and my oxygen was still in the upper 80s/low 90s, but I didn’t feel drugged. My oxygen eventually went up as the night went on and on Friday was back to normal (well, normal for me, which is mid to upper 90s). My throat, however, has yet to fully recover. They must have scratched it up good. It is feeling a little better today than it did yesterday, so progress! 

We were discharged on Friday. We were in the hospital for 3 weeks and 1 day (I think the one day really put it over the edge ;-)) Logan went to my mom’s house and I went to my dad’s house. We did this for two reasons. 1: There was a room ready for me at my dad’s and not really at my mom’s since Meghan stole my old room when I went away to school. I mean, she changed the comforter and everything. It’s like I never even existed. 2: Logan tested positive for aspergillus, which can possibly delay lung transplantation, and I did not (I win!). I kind of feel bad for aspergillus. He may have a bad reputation, but he really is a Fungi (fun-guy). I apologize for that lame pun, but I just couldn’t resist. Unlike Staphylococcus aureus, which resisted Methicillin. (MRSA! *slaps knee*). [I am so sorry. It is late and we all know that I am a huge nerd. I just wanted you to know that I am aware that my behavior is nerdy and somewhat (alot) weird. Let’s just all pretend that this whole part of me telling lame disease jokes never happened.] My dad didn’t have Wi-Fi, but now he does because, honestly, how can they expect me to survive without the internet? I don’t care so much about Facebook or Twitter, but Netflix? Come on! Oh, and I guess this blog too. That’s why it took me a few days to post. My dad was upgrading from the Dark Ages.

“So, Jordan, why are you living with your dad? I thought you lived at Stetson?” Great question! Thank you for asking! After two weeks of being in the hospital, I started to stress out. Like, a lot. Missing a couple of weeks in high school is hard, but it is not impossible to make up, especially when you have been able to build great relationships with your teachers. I have always been blessed with great teachers who were supportive, understanding, and just overall amazing. Sure, I would get stressed about making up work and tests, but my teachers were always there to help me and trusted me enough to know that I would do the best I could. So I’m just going to take this moment to thank all those teachers out there who were there for me whenever I needed it, whether it be for tutoring or a shoulder to cry on. You all know who you are, especially since I’m friends with most of you on Facebook. 

College is so different. It’s not that the professors don’t care. It is just that you don’t have the same relationship with the professors that you do with your teachers. You only go to class a couple of times a week. So by missing three and half weeks of class, I missed approximately 7 meetings of each class. I missed 4 of my Biology labs, which are impossible to make up. Assuming that I would get back to school this week, I would only have 1 meeting left in my first-year seminar class and 5 meetings in my other 3 classes. Then the semester is over. I don’t need to explain how much work and stress that is. I could request an Incomplete for each course, which would give me an extended time to make up all the work. But each professor has to agree to an Incomplete for his/her class, and my grade for that class would probably not be where I would want it to be, especially when trying to maintain scholarships. Another tidbit of information: Stetson does not offer online classes. Why does this matter? Well, since I will be going into the hospital every two months or so, for two weeks (at least) at a time, going to classes and maintaining good grade will be hard. Not impossible, but also extremely stressful. Let’s face it, I have a lot on my plate with the whole “lung transplant at the age of 18” thing. I do not need to add any unnecessary stress to my life. So after much research, many arguments in my head, and many, many, many tears, I made the decision to withdraw from Stetson.

I pause here because I just want to explain that this was not an easy decision. In fact, it was one of the hardest decisions I have ever had to make in my life. You get this picture in your mind of what life is going to be. Graduate high school, go to college, have the best time of your life. I wanted that college experience more than anything. I knew I was going to be successful at school and living on my own. If you know me pretty well (which you probably do just from reading this), then you know I am super determined, hard-working, and stubborn. I don’t give up easily. Leaving Stetson is one of the most heart-breaking things I have ever had to do because it is something I worked so hard for. From the AP classes, to the SAT and ACT, to filling out scholarship after scholarship after scholarship, and to making sure all my paperwork was where it needed to be, when it needed to be there, I put years of work into this dream. I felt like everything I had ever worked for didn’t matter. 

But like I said, I’m stubborn and I don’t give up easily. I decided that my journey may be slightly different from most other 18 year-olds, but I would still get to where I wanted to go. It might take a little longer and I’ll have to work a little harder, but I’ll get there. I’m hoping to get into UCF for the Spring semester so that I can take online classes. This will give me more flexibility for when I am in the hospital. I will probably stay at UCF until I have earned enough credits to transfer to UF (Hear that, Moriah?!). At least that’s the plan for now. It might change once we know more definite information in regards to transplant. No matter what though, I will not sit around between hospital stays being a victim. That is total crap and honestly sounds really boring. 

So that leads me to today. We had to go up to Stetson to officially withdraw from the university. Sounds easy enough right? NO. You have to fill out this form (which I was smart enough to do beforehand) and take it to the VP of Student Affairs. She looks over it and then you have to sign it. THEN you have to take the form to get signatures from Financial Planning, the Bursar, and Housing and Residential Life, which are basically all in different buildings. And of course two of the people are at lunch so we had to waste some time until they were back in office. THEN when we go and talk to the Financial Aid lady, she informs us that they will have to send my Bright Futures money back to the state since I didn’t earn the credits. I totally get that. However, now that will leave me owing Stetson $1,600 that has to be paid back before I can use Bright Futures for the Spring term at a different school. I’m sorry, but why am I being punished for having to MEDICALLY WITHDRAW (read: necessary) from this school. And of course they don’t offer any assistance in paying this. So now I’m hoping that one of my scholarships that I set aside for Spring term can be put towards that, lowering our amount due to $600. Which is still a lot of money, but not as much as it was before. Let’s just say it was a frustrating day, added insult to injury, poured salt in the wound, etc. 

On the bright side, I got my room at my dad’s house all organized, I have a bathroom that I don’t have to share with 15 other girls, I don’t have to wear shoes in the shower, I have a long winter break, I don’t have to pay rent, there are dogs to play with whenever I want, I get to eat delicious home-cooked food, I get to sleep in a comfy, queen size bed instead of and Extra-long twin, I am allowed to light candles, and many other things. 

See? There is always something to be grateful for. Especially Wi-Fi. 

 

P.S. The title of this blog is a line from a song that continuously runs through my head. Whenever I start to have a little pity-party, the line always comes to mind. If you can guess the song, you get a gold star and a shout out on my next post!

Does Dyson make a mucus vacuum?

I’m writing this as I do my vest because I’m so tired and I know that I’m just gonna pass out after. Another annoying thing about the hospital: even if you wanted to go to bed early, you can’t because a chest therapy is due at 10. So early for me is about 10:45. 

Tomorrow I am getting a bronchoscopy. They basically stick a little camera and vacuum-like tube down my throat and into my airways. They take a look around and suck some of the mucus out, which they then send off to the labs to determine the bugs I’ve got livin’ down there. We’ve had them done once before, and Logan got one at the beginning of this stay. They avoided doing one on me because of the pneumo, but they really, really, want a sample of the mucus from the dark, scary corners of my lungs. That stuff is harder to cough up so a bronch is the best way to get it. 

Since I will be going under anesthesia for my procedure at 12 tomorrow, I will be NPO (for all you normal people out there: not allowed to eat or drink) at 4 AM. The worst is not being able to drink. You don’t realize how thirsty you get until you aren’t allowed to drink. I swear, they just like to torture us. 😉

Good news: I will be going home on Friday.

Bad news: Logan gets to go home on Thursday, which means I will have to suffer alone for like a whole 12 hours. Lucky duck. Logan would argue that I don’t talk to her when she’s here anyway, but that’s a total lie. I often ask her to lower the blinds or get me food. I don’t really understand what more she wants from me. 

Multiple Stabbings in 5114

I meant to post yesterday, but I got a little distracted by the Stanford-Oregon game. I mean, who didn’t? It was complete domination until the 4th Quarter, which was when Oregon finally decided to score. And that was mostly due to luck and some guy’s head blocking the field goal attempt. But Stanford managed to hold their lead, and now Oregon will be less likely to bump FSU out of the 2nd rank. So, woo! 😀

Much to the disappointment of my best friend, we are not being transferred to Gainesville. Apparently, they only medically transfer into the pediatric unit, and Logan and I are going to be treated by the adult transplant team because, well, we are basically adult-sized. Which is beneficial because there are more adult lungs available than children’s (I think we can all agree that this fact is a good thing for obvious reasons). Besides, even though small candy bars are labeled “Fun Size” they are actually less fun than full candy bars. In what world is less chocolate more fun? Not a world I want to live in, that’s for sure.

So they are going to see us as Outpatients after we get released from here (which is approximately end of next week). However, they only see new patients on Mondays and they are booked to January. Our care team over here is trying to work with the team at Shands to squeeze me (because I’m older, cooler, and overall more awesome. Oh, and a little bit sicker, but not by much) in around Thanksgiving. So that’s where we are at right now. More uncertainty. Of course.

To get a really good idea of what they are working with, Shands requested a CT scan of my lungs. You can do a CT scan without contrasting dye, but it (supposedly) gives a really good picture if you use it. But you can’t put it through an IV Port (which I have on my chest, if you didn’t know) because the pressure from the pump that inserts the dye will blowout the tube in my chest, and then I would have to have surgery to put in a new one. Totally not worth it. So they put an IV in my arm. Well, tried. It took 4 attempts before they were finally able to get it in (that’s what she said). They only tried twice on Logan before they gave up. She didn’t get to participate in the CT festivities like I did. The scan process only takes about 15 minutes total, with prep and everything. The actual scan takes only a minute or so. But the weirdest/coolest part is when they inject the contrast dye (which is iodine, by the way). It is really hard to describe, but I’ll try. When it goes in, you suddenly feel this rush of warmth all over your body. If you’ve ever been on loopy juice, you kinda know the warm feeling I’m talking about. You also kinda feel like you have to pee, even though you really don’t. You get this metallic taste in the back of you throat. It’s not an unpleasant feeling, just weird, and only last a couple of minutes. I started laughing when it happened because the technician’s earlier description totally made sense. If you ever get a CT scan, I hope you think of this blog and start laughing too.

Oh, I am also waiting for my port to be re-accessed after an earlier failed attempt. I think I have been stabbed around 8 times today. 4 in my chest, 3 in my right arm, and 1 in my left arm. Yeah. Get on my level.

Up in the Air

One of the worst things about hospital stays is the unknowing. You don’t know when you’re going to get out. It’s all just tentative. There are so many factors that it depends on. And some factors depend on others. It’s like those “Choose Your Path” books. “To fight the troll, go to page 15. To go back to the crossroads, go to page 10. To curl up in the fetal position and just cry, go to page 50.” Stetson has called me like 3 times asking if I know when I’m returning. I’m all “I don’t know.”, and I hear them kind of sigh and say “Okay. Hope you feel better”. I’m glad they care and everything, but seriously. Stop calling every couple days, especially when I told you I’d be gone at least 2 weeks.

Anywho… the doctors want us to transfer to Shands to start the evaluation. They are trying to speed up the process of the transplant because they think we are really good candidates. It’s actually kind of ironic. You have to be sick enough to qualify for new lungs, but not too sick that your body won’t be able to handle the surgery. Its this little, tiny, itsy-bitsy range that we happened to fall into. So they want to expedite the process so we don’t fall out of this range. Ideally, they want us to go to Gainesville by this weekend. But they are still waiting on final word from Shands. They say we will know for sure by tomorrow, but they’ve said things like that before. So right now we don’t know if we will be going to Gainesville. But the doctor still thinks that we will not be officially “free” for a week. So we transfer to Gainesville and they evaluate us through to next week, or we don’t go to Gainesville and are in here through to next week. Fun times.

Good news though! My pneumothoraces are gone! X-ray from yesterday showed that they have basically disappeared. Holding off on chest therapies for a couple more days just to play it safe, but its a good sign. 😀

Oh, and school is completely up in the air right now. That is a topic for a whole other blog post and I will explain when I know some more details and get some questions answered. It’s like a cliff hanger. 😉

Rough Day

A little background info: The past few weeks or so I had been feeling really short of breath. I thought it was just an infection at first, but I wasn’t really coughing up a lot of mucus. I was also having this weird bubbly feeling in my chest when I would cough or bend a certain way. It felt like a muscle spasm, so at first I just ignored it. But when it didn’t go away, I connected the shortness of breath with the feeling. Now, I must be a hypochondriac or something because my first thought was pneumothorax, or collapsed lung. So, I did what any normal person does when they think they might have a collapsed lung: I Googled it. Basically, a tear in your lung causes air to escape into the pleura, the membrane between your lung and your chest wall. This air bubble prevents the lung from expanding all the way. As it turns out, they are really common in people with lung diseases, like CF. Also, if they are small, they can go away on their own and the only way to confirm a pneumothorax is by X-Ray. So I decided to just ignore it. I mean, I didn’t have any proof that it was a collapsed lung, just a suspicion so I didn’t want to make a big deal out of nothing, especially if it would just go away on its own.

The weird bubbling eventually did go away, but I was still pretty short of breath when we went to the doctor last Wednesday. I told the doctor about it, but we were going to go into the hospital anyway so he didn’t really do anything. When my X-Ray came back on Thursday, they found that I had a small-ish pneumothorax in my upper left lung and a small one in my right upper lung. I was all, Yeah! I was right! Woo! I know that a collapsed lung sounds really bad and scary, and it is if a normal person has one because that signifies something is really wrong, but because my lungs are so scarred, its actually not as shocking. The doctor’s solution: put me on oxygen to help dissipate the nitrogen (the main component of air) in my pleura and avoid chest clearance therapies as to not worsen the pneumothorax. Easy enough. 

It hasn’t gotten worse, which is good. But it is taking forever to get better. Which brings me to today. We knew coming in that we would be here for two weeks, which suck enough. But with this whole pneumo thing, who knows how long I’m here for. They won’t do a PFT (pulmonary function test) until my lung is healed. My lung function needs to go up before I can leave, which is harder to do without the airway clearance that I usually do multiple times a day. So now it could be longer than two weeks. I totally understand why and I don’t want to leave until I’m as healthy as possible.

But what about school? I was already freaking out about missing two weeks of school. Now it could be more. I’m especially worried about my Bio Lab. I will be missing at least 3 labs. 3!!! How do you make that up? Will I pass the class? I don’t even know. And my First-Year Seminar ends the week before Thanksgiving. That’s three weeks away. Will I be back in time to finish the class? I don’t even know who to contact at Stetson about my options for making stuff up. I emailed like three different offices today, so hopefully one of them will be able to help me. I really don’t want to have to get incompletes for this semester, especially when I have already spent the past two months doing the work. 

On top of that, registration for Spring semester is next week. I don’t even know what I’m doing next semester because of the whole transplant thing. On top of all the appointments I may have at Shands Hospital in Gainesville, I will also be in the hospital every 2-3 months, for stays of at least 2 weeks. Do I put a hold on school until the transplant is over, or do I keep going and try to do as well as possible? My social worker is going to contact Stetson to talk about the options for me.

But its still hard. This isn’t really how you imagine your life after high school. Most people graduate, go to college, and start their lives. It makes me sad to think that I might have to put off school for a semester or two. Its not ideal, but it might be necessary at this time. I have to put my health first, which is something I took a long time to accept.