Hyphen

When I was born, I weighed 10 pounds, 2 ounces. I was so chunky that I got stuck on the way out and had to be born via c-section. But, damn, I was adorable. My parents didn’t know at the time that I had cystic fibrosis, but when I “failed to thrive” over the next six months, the doctors eventually came to the diagnosis. This wasn’t an immediate death sentence, but it also wasn’t expected that I would live to adulthood. CF was still considered a children’s disease as many patients died before their 18th birthday. But my parents didn’t allow the disease to take over our lives. Instead, they believed that if I hadn’t been born as fat as I was, I most likely would’ve died before it was discovered I had CF. It was like a sign that I was supposed to be here and everything would be okay.

Eighteen years later, the prophecy of my diagnosis nearly came true. But again, everything worked out in my favor. I received a double-lung transplant just days before death, and one week later celebrated my nineteenth birthday, one I was told I’d probably never see. Through this blog, I was able to share my story with all of you. Many of you told me I inspired you. Some called me a miracle, others that I was meant for something. I didn’t know if I believed all that, but I liked thinking that, ya know, maybe I’ll change someone’s life one day.

For the next two-ish years, I lived the life I always dreamed about. One where I could breathe and do the things I wanted. I lived selfishly. I don’t mean that negatively, but simply that lived for myself. I was a young, healthy college student who intended to live it up because I was finally normal. I was hedonistic in the way that most young adults are and I loved every moment of it.

But then my lungs started rejecting. I was back to being unable to breathe, but this time I knew how precious and wonderful that ability was. I nearly broke waiting for yet another set of lungs that I knew, statistically, were very improbable. I had already received one life-saving surgery, which was something most people never get. I again felt selfish, but this time I felt selfish for asking for third chance at life. However, you all believed in me still. The messages of support and love that overflowed my life during that autumn saved my life.

After my second transplant, I decided that the selfish life wasn’t really for me. I devoted more of my time working hard in school and work, bringing awareness to organ donation, and working with Florida Hospital and the Transplant team to raise money for the CVICU. I focused on my confidence and love for myself. I did things alone, like eating out or traveling or going to the movies, not because I didn’t have a choice, but because I realized that there is comfort in simply being by yourself.  I spent more time with my family and friends, surrounding myself with love until, eventually, I found a love I’d never experienced before. He was stubborn and sarcastic and wouldn’t leave me alone even when I pushed him away. Basically, I found someone who annoyed me so much that I fell in love with him. The best part is that he fell in love with my annoying self too.

This past summer created new challenges. I was beginning to reject my lungs again, as well as trying to fight off pneumonia and a flu virus. I spent two months in the hospital undergoing anti-rejection treatment that kicked my ass and pushed me to my sanity limit. I also experienced severe anxiety for the first time, which I didn’t realize I was treating with narcotic pain medicine. I mistook my anxiety for pain until my dependency on the drugs got so bad that I was going through withdrawals when stopped for a day. By that point, I knew I had a problem, but it’s hard to resist when you are stuck in the same room for months, frustrated with your health, and looking for someway to escape. With the support of my family and doctors, we were able to get it under control, but I was extremely ashamed, even though I knew I had no reason to be.

I was discharged from the hospital at the end of July, weighing twenty pounds less than when I was admitted. My lung function was still really low and my antibodies still detectable, but I left the hospital with the knowledge that this was just temporary and my body needed time to regain its strength. If needed, we could do another round of anti-rejection treatment.

 

I remember hearing or reading something once about how gravestones or memorial plaques or obituaries have two dates: a date of birth and a date of death. The only thing separating the two is a hyphen. A person’s entire life is on that hyphen. Their entire existence. Every sleep, every sunrise, every song they’ve ever heard, every person they’ve ever loved. Every breath they’ve taken.

This is my hyphen, and, unfortunately, it is coming very close to its end.

It has taken me 10 days to find the courage to write this post. Not because I’m afraid to die, but because I am so afraid of disappointing you all. I feel like you have all invested so much time, love, and support into this blog and my journey, that I really hoped I’d never have to write this. But here it is, so I want to get things right.

First of all, you are allowed to grieve in any way that suits you. Just know, that I have come to terms with this. I had made the decision over the summer that even if given the option, I would opt out of a third transplant. Each time it gets more difficult, both for my body and my spirit. Also, I can’t be selfish again, especially if my lungs are just going to reject in another two years. I need to allow this gift for someone else. My doctor believes that the damage to my lungs is irreversible. Any anti-rejection treatment would put my body through hell for there to be no change. We both decided that the best thing for me is to focus on living the rest of my life on my terms. I’m currently trying to gain weight so my body has reserves to help fight off any infections I might get. This is the biggest key to prolonging my life. We have no idea how long I have because there are so many factors that are out of our hands.

Secondly, once you have gotten over your initial grief stage, I would prefer if you could look past my imminent demise and focus on what time we have left. I do not want to be pitied. I am so extremely lucky for the years I have been on this earth. I have no regrets. At all. Of course there are things that I wished for my life that I’ll never get to do (have children, finish my college degree, etc.) but I have had such a wonderful and fulfilling life. I truly mean that. I have constantly been surrounded by people who love me, and even the most difficult parts of my life were manageable because of that love. So, please, let’s focus on the happy.

Finally, I want to say thank you. I know I’ve said that a lot over the past four years, but this time it counts more. Thank you for being with me on the crazy-ass journey. I know a bunch of you have considered filing a class action lawsuit against me for medical costs from all the whiplash, so I’d appreciate if you hold off until after my death and leave it for my family to deal with. 😉

One of my biggest complaints about dying is that I can’t go to my own funeral, which I assume is a pretty common grievance. My family and I had the idea of throwing a party of sorts (that’s not macabre at all) celebrating my life with all the people I care about. It would of course be titled Jordan’s Farewell Tour because I’m a damn rockstar. It would possibly be next spring, but the date is TBD given the circumstances. Also, I am looking for some bucket list ideas. I’m trying to live it up as much as possible, but I do have some restrictions, like oxygen and in-country travel. I’d love to hear from you all some of your ideas.

I know this is the worst possible blog post you’ve ever read from me, considering the content. But I don’t want to hide anything from you. I made that promise when I first started and I will see it through. Death sucks, mostly for the living we leave behind, but we are going to go through this together, like we have for the past four years. I know it will take time to grasp this, but if you have questions, please ask. I’m always here.

*Record Scratch* *Freeze Frame*

 

Me (in voiceover): So you’re probably wondering how I got here…

 

Here is, of course, in a hospital bed on the sixth floor of Ginsburg tower at Florida Hospital. I’ve been here for almost an entire week, but have yet to inform most of you because I didn’t really have any information to share. But now I do, so here we go!

It all started almost two weeks ago, when Joe and I were on vacation. I had been having a little cough since my last hospitalization in mid-April, but it started to get worse while I was in South Carolina. I was also getting short of breath after any sort of physical activity like climbing stairs or walking quickly. By Mother’s Day, I was also having chest and back pain. So last Monday, I went in for a Pulmonary Function Test as well as a chest X-Ray. Later that afternoon, my nurse coordinator informs me that I will be getting a bronchoscopy with biopsy Tuesday morning and will be admitted to the hospital after.

They started me on three antibiotics as well as an anti-fungal medication while they waited for cultures and the biopsy results to come back. By Friday evening, they had determined that my donor antibody count was high, which can lead to Antibody Mediated Rejection or AMR. I had AMR when my lungs were rejected two years ago, so getting that news obviously made me a little nervous. Luckily, they caught it early and the antibody count is not terribly high.

However, treatment for AMR will require treatment in the hospital for at least 16 days. Treatment involves a process called plasmapheresis, which is similar to kidney dialysis, except that it takes the bad plasma (with the antibodies) and replaces it with new plasma. This process takes about two hours, every other day. I will also be on a chemotherapy drug called Carfilzomib as well as an infusion of IV Immunoglobulin. They are continuing one of my antibiotics, Zosyn, and the anti-fungal medication Cresemba. So, in summary, I’ve got a lot going on.

Between the chemotherapy and the plasmapheresis, some days I will just want to sleep all day. The plasmapheresis can be very draining and may make me feel anxious, nauseous, and fatigued. Most days though, I should be feeling fine and probably bored out of my mind. If you want to come visit me, that’d be pretty cool, I guess. Just text me a couple hours ahead of time so I can let you know if its a good time. If you don’t want to visit, that’s cool too. If you want to just pop in and bring me food, that’d be awesome because hospital food blows. If you just want to text me, post on Facebook, or interrogate my family or friends to see how I’m doing, I’ll appreciate that as well. I’m going to try to keep everyone updated as best I can, but for the most part, things are going to be pretty boring for the next 15 days.

Thanks for reading! I know this blog wasn’t as nearly as fun as some of my others, but sometimes ya just have to be informative and technical and lame.

Just a Quickie

For those of you who don’t know, I was admitted into the hospital on Tuesday after a CT scan suggested I had pneumonia. A few weeks ago,  I came down with a virus, but I started to feel better early last week. However, this past weekend my cough increased and I was very mucusy (as well as sexy, obviously). So now I’m at Florida Hospital on four different antibiotics and one anti-fungal medication. I will be here at least through the weekend. Hopefully my cultures grow something so we know what we are trying to fight. Unfortunately, rejection can sometimes look like an infection, so I am most likely going to have another bronchoscopy and biopsy in a few days.

I am so thankful to have such an amazing support system made up of coworkers, friends, and family. Thank you for reaching out to me to make sure I’m okay and asking if I need anything. It really brightens my day when I get those simple words of encouragement, so I just wanted to let you all know how much I appreciate it. I am going to do my best to keep everyone updated on whats going on. I love all of you and thank you again for being amazing people!

Where I Stand

I’m sure many of you are tired of seeing political posts all over your social media. I’ve got bad news for you: It will be a long while before they end.

I have remained pretty quiet on social media in regards to this election. However, now that the votes have been cast and I’ve had a couple of days to gather my thoughts, I’ve decided it is time I speak.

Although it is far from the outcome that I wanted, I can accept that Donald Trump is the President-Elect. I have always had a respect for the office of the President. I understand the pressures, expectations, and the constant criticism that the job has. Even if I do not like the president or his (because there have only been male presidents) policies, I have refused to stoop to blatant bullying and name-calling. I hope and pray that Donald Trump makes decisions and pushes policies that are beneficial to the country without sacrificing the rights and lives of others. Do I think that Donald Trump should be president? Not particularly. Will I give him the benefit of the doubt until he (undoubtedly) proves me wrong? Yes. I will grudgingly accept him as the president until my fears are confirmed because I cannot judge something that has yet to happen.

However, these are things that I can not and will not accept. 

I refuse to accept any displays of racism, sexism, bigotry, homophobia, transphobia, xenophobia, etc. It does not matter who you are to me. You could be a stranger, a friend, a coworker, or a family member. I will call you out on the things that you say and do. You have a right to believe what you want, but I also have the right to call you out on your hatred and prejudice. Will it be uncomfortable for me? Most definitely. But discomfort to me is nothing when compared to the degradation of the person you are purposely hurting. You can claim it is a joke, or that I’m being too sensitive, or that political correctness is ruining this country. But all I hear is you value your own opinion over the happiness, safety, and respect of others. Personally, I find that incredibly selfish. I always believed that compassion and humanity was the thing that bonds us all together. It is what keeps us strong in the wake of tragedy. You may claim that they are just words, but I understand that words have power. Words matter. I have been using my words for three years to bring a sense of hope and light to my family and friends even when I didn’t necessarily believe them myself. My words matter and so do yours. Use your words to spread love not hate. Stand up for those who face prejudice or discrimination or hatred because they need your support. There will always be hatred in the world. It is a sad fact of life. But if I can provide comfort to someone who feels alone and threatened, I will.

This is my formal promise to anyone reading this that I will not sit idly by when I see an act of hatred. I do not care if you are making a rape joke, telling someone with a smile on your face that you hope they are legally in this country, threatening a woman wearing a hijab, or shouting at someone that their life doesn’t matter. I promise that I will stand up and use the words I have to make a difference. I am a very kind person, but I am not weak and I will not be polite if you are being rude. I was born with privilege. This is a fact. The circumstance of my birth has prevented me from experiencing what most marginalized groups in this country go through. It is impossible for me to fully understand the experiences of these people, but it does not make me any less empathetic or furious at the way people treat them. I will use the privilege I have to benefit those without, but I shouldn’t have to. You should simply listen to what black people, Muslims, women, Hispanics, the LGBTQ community, Indigenous people, disabled people, and any other minority group tell you. Actually listen to them and try to understand what they are feeling. When they tell you when something is offensive, don’t accuse them of overreacting or being sensitive. I’m pretty sure they know their lives and experiences better than you do. And, God forbid, you show a little compassion.

I could go on and on, but I think you all might understand my point now. I can deal with a lot things, but I refuse to deal with hate. So please, for both our sakes, keep that poison to yourself.

Fall

Hello, internet people!

It has officially been one year since I was admitted to Florida Hospital after my bronch-gone-bad that led to my eventual second transplant! Oh, how time flies.

Fall has always been a bittersweet time for me. It is the beginning of the best time of the year; Halloween, Thanksgiving, Christmas, New Years’ Eve, and my birthday all occur within three months of each other, making this quarter of the year not only expensive and frantic, but also exciting and festive. October is also the start of sick season and I spent most of my teen years in the hospital on IV antibiotics to fight off lung infections. I get my flu shot every year about this time, stock up on my hand sanitizer, and avoid people as much as possible, especially now that I am immunosuppressed.

Three years ago, however, was the start of my health’s downward (and exponential) trend. As you all might remember, October was the month I started this blog, as well as my first hospitalization as a college student. That hospitalization led me to withdraw from Stetson to focus on my health and properly prepare for transplant. Although I never got to properly prepare, the transplant still happened two months later.

The next autumn was amazing. I was healthy for the first time since my youngin’ days. I was makin’ that money, going to school, having a fantastic social life. I celebrated Halloween outside of a hospital room for the first time in 3 years. I thought my time of bittersweet autumns was over and that I could simply enjoy this quarter of the year for the rest of my life.

HAHAHA.

Fall 2015: probably the worst of my life. I was in the hospital for two months and was feeling the lowest I had ever felt in my twenty years of life. Two decades of dealing with illness, yet this time last year was almost my breaking point. I was close to giving up multiple times.

But, of course, I didn’t, and I was transplanted again. A third chance at life. A third chance at having wonderful autumns.

This season makes me nervous. I am constantly on edge that something will go wrong. Or even worse, everything will be perfect and I’ll be due for something terrible to happen next fall. Gotta keep up that pattern right? Good fall, bad fall, good fall, bad fall, on and on and on until the end of time (or at least until I learn from the bears and start hibernating through the season).

I’ve been experiencing some blood sugar issues for the past couple weeks, causing my slight anxiety about this season to grow. I haven’t had to deal with insulin or diabetes in several months, so the random nature of this flare up has me worried. My transplant doctor believes it to be stress, but only an endocrinologist will be able to help stabilize the issue. It’s strange continuing on with my daily life and responsibilities when I have this issue raging in the back of my mind. Whenever my mouth gets dry at work, I’m worried my blood sugar is dangerously high. When my hands start shaking as I’m driving home, I fear my blood sugar has dropped too low. Some of it is purely in my head. But sometimes it’s not and I become frustrated with my body and its inability to cooperate with me. That coupled with the slight infection I had a couple weeks ago has done a great job of reminding me of my mortality.

My body also doesn’t seem to care how it affects those around me. I have so much love in my life that I honestly cannot believe how lucky I am. But with so much love, also comes worry when things aren’t going 100% the way they should. Between my parents, siblings, friends and nursing-student boyfriend, I have every aspect of my life being concerned about.

Of course, with all these people worried about me when my health starts to get wonky, my worry also increases, not for myself, but for them. I don’t want to be a stress for them and I don’t like to cause them pain. When my health started declining last year, I found I was more concerned for my loved ones than I was for myself. If I didn’t make it, I didn’t want them to experience that loss.

Dating is rough no matter who you are. Nowadays, the dating world is scary and confusing and it’s hard to know where to go to look for what you want. Now, imagine dating with a chronic illness. Everyone has baggage, of course, but the baggage of illness is especially heavy, daunting, and expensive. I’ve always been a secret romantic, even if I sometimes act like I’m too cool for that kinda thing. I always knew I wanted to get married and have a family and that continues to be one of the things that I want to do in my life. Since a young age, I knew I wanted to be a mom. But as I grew up and my health began to worsen, I seriously questioned if I would ever find someone willing to put up with my health issues. Movies, books, and TV shows love to romanticize illness, telling these great stories of these chronically ill or disabled people finding love and happiness. The problem is, they don’t paint realistic pictures of those illnesses, such as the weeks long hospitalizations, all the medications, the effects on the body, the constant expenses.

It was a wonderful idea to think that I would find that one guy who instantly fall in love with me and completely ignore the dark cloud hanging over my head. After my first transplant, I thought, “Finally. I look and feel normal. I take a lot of meds, but for the most part there is nothing wrong with me. I’m healthy. Dating will be so much easier now.” And it was. Or at least, casual dating was. As time progressed, I would start to let my walls down, explaining my health situation in more detail. For twentysomethings though, that’s a lot to handle. Trust me, I am fully aware of the situation. I don’t blame anyone for deciding they are not equipped to handle it. But when people constantly come into your life and then leave once you open up, you start building your walls higher and higher with stronger materials. It gets harder and harder to knock down those walls until eventually you decide it’s just not worth it.

When you do find someone who fights to break down your walls, then you face even more issues. You start caring (gross) and wanting wants best for them (even grosser). You are constantly afraid of what is going to happen when things start going bad, because in your experience, things always go bad. What if they decide its too much, but you are already fully invested? What if they leave right when you are at your most vulnerable? Or, what if they don’t leave? You don’t want them to hurt. You want them to have a great life without worries about health-issues. You want them to have a family. You also don’t want them to feel stuck. What if they start to resent you?

It is always risky to open yourself up to someone, sick or not. No one wants to experience heartbreak or hurt. I’ve found that best thing to do is just jump all in. Things don’t always work out and people leave. But sometimes, you just might get lucky and find someone who will choose you 100% of the time. And I think that reward might be worth the risk. Because who are we without the people that we love? Life can be lonely and rough and so terrifying. As the wise Dr. Seuss once said:

“I’m afraid that some times
you’ll play lonely games too.
Games you can’t win
’cause you’ll play against you.

All Alone!
Whether you like it or not,
Alone will be something
you’ll be quite a lot.

And when you’re alone, there’s a very good chance
you’ll meet things that scare you right out of your pants.
There are some, down the road between hither and yon,
that can scare you so much you won’t want to go on.”

When life gets really difficult, its the people in your life and the love that surrounds you that helps you move forward. Love can inspire you to keep going, to fight your battles, and to believe in yourself. The love that surrounds me constantly amazes me and I am certain that without it, I would not be here.

So, take risks with love. Take the jump. It just might be worth it.

What to do when you’re craving deep dish pizza

It’s hard to believe I am already six months post-transplant (again). It seems so long ago. It’s been almost a year since I started rejecting my old-new lungs. I look back on that time and it feels like a dream, which frankly frightens me a little. What if I forget how it felt to not breathe and I take these lungs for granted? When everything is great it is difficult to be appreciative for everything I have. Like they say, hindsight is 20/20. You only know what you have until it’s gone, and I don’t ever want to experience that terror I felt when I realized I might not have any more time left. I don’t want to get to the end and regret not doing something. It’s so cliche, but that doesn’t make it wrong.

A couple of days ago I was thinking about how much I want to travel. It always seems so out of reach. I work most days, and it is rare to have consecutive days off in a row. I get anxious about money and when I take days off, I worry that I won’t have enough to take care of my responsibilities. I don’t think this is unusual. Most people worry about the same things. I’ve always just accepted that I would travel when I was more secure and set in my life.

On Wednesday, I had a pretty good day. I was surrounded by great people, delicious food, and cheesy music. Those are pretty much my three criteria for good days. It was one of those days that made me so grateful for my life. I was spontaneous and relaxed and honestly did not worry about one thing. Okay, that’s a lie. I did worry about a wave nearly killing me at the beach but what can you do?

So I was pretty much high from great vibes. This high lasted through the morning, even while I was sitting in a doctor’s office. I’m in the room, just waiting for the Nurse Practitioner and browsing the internet. I somehow start looking at flights to Chicago and just think “fuck it” and book a flight for June.

This is pretty much going to be the craziest thing I’ve ever done. Well, like, in a non-life-or-death situation. Double-lung transplants are pretty crazy, I guess, to people who aren’t frequent fliers like me. Once you have the second, it’s just meh. “Oh, you had a double-lung transplant? That’s so last season.” That’s why Logan will never get on my level. She’s still hanging with the one-timers. Loser.

I’m very nervous because this is my first time traveling alone and pretty much adulting by myself. [When I originally wrote this I had “travelling” instead of “traveling”, which isn’t necessarily wrong, but when I looked up the difference of one l versus two, Grammarist said that the American way is with one and all other English speaking countries outside the U.S. use two. Moral of the story is that I read way too many books by British authors because my instinct was two.] But I didn’t almost die, TWICE, to just wait until a “better time” comes along. When will it be a better time to go to Chicago? Definitely not in the winter. I heard it sucks up there in January. [My jokes are so bad. I really wish I could stop, but I just can’t.] So, I’m going to Chicago in June and it is going to be my first adventure of many.

In other news, Logan graduates in a week and a half and I’m pretty much a mess about it. I cannot believe that my little nugget is going to be in COLLEGE. I just don’t understand where the time went. I swear she was just asking me to play Barbies with her. Of course I said no, because I was eleven and oh my god, eleven year olds are too old to play with Barbies, like why can’t you leave me alone so I can talk to my friends on AIM. She just did not understand how important networking was in 6th grade. [Okay, but seriously, middle school is the worst. I thought I was so grown but in reality my parents had to drive me everywhere and we would really only go the mall or movies. Like, where did I even get money for this social life? I have an income now and I don’t even have much of a social life. I just don’t understand how I would go to the mall and literally just walk around and get non-coffee drinks at Starbucks. Like, was that even fun? It seems like a lot of cardio. Now, I get cappuccinos with three shots of espresso and only feel a little cracked out and I try to go only to matinees to save money. Oh, how life changes.]  Good news is, we will be moving in together in the fall, so if she asks me to play Barbies again I might say yes.

I feel like I usually end these on a very deep, philosophical note.

Not today. Today I’m ending it with this picture of Meghan and Logan being weirdos.

P.S. May is Cystic Fibrosis awareness month. So, like, be aware and stuff.

 

What is “Normal” Anyway?

One of the reasons I started this blog was to share my personal experiences living with cystic fibrosis and a double-lung transplant. I know it is extremely difficult for “normal” people to understand what us sick kids go through on a daily basis. I figured I could help people empathize if I wrote in a user-friendly kind of way. I’ve never been shy, but I’ve also never enjoyed the spotlight. I don’t like everyone’s eyes on me, but I also realized the importance of sharing my story, so I decided to write a blog.  I always write like I’m talking to one of my best friends, as you can probably tell from the unbelievable amount of bad jokes.

While it is great to help people who don’t face illness every day understand what it is like to be a Spoonie, I found that it is also a great source of relief for people in similar situations to realize they aren’t alone. On Tumblr and Instagram, I have found dozens of amazing people with CF and other chronic illnesses. Things that I thought were unique to me, I realized other people went through as well. It is this wonderful community full of people who understand and support each other. You become invested in people that you’ve never met. When they are sick or hospitalized, you worry. When they receive a transplant or get engaged or graduate, you celebrate. And when someone passes too soon, you grieve. Those are the worst because you realize that you could be in similar situation. No one likes that kind of reality check. Thankfully, we experience more victories than defeats and we continue to support one another, even if it is from a distance. It is nice to know that you aren’t alone.

I know I haven’t blogged in a couple months. That is actually one of the reasons I’m writing this post. I’ve written a lot about being sick and my life during hospitalizations. I realized that I haven’t really talked about what it is like to suddenly not be sick. You are probably thinking “Well, it should be pretty great, right? I mean, not-dying sounds ideal.” You are definitely right. It is pretty great and not-dying is for sure my ideal status.

What a lot of people don’t realize, though, is how different you feel after transplant. It might not even be unique to transplant recipients. It could be anyone who has experienced severe trauma with an extended recovery process. I don’t know. I only know what I’ve experienced and what I’ve read.

Obviously, the biggest change is how I felt physically. Before this most recent transplant, I felt like my lungs were filled with lead. Everything took an enormous effort. You don’t realize how much energy it takes to shower until you are forced to only take baths because standing up for more than a minute is exhausting. Even so, you have to wear your oxygen in the tub and take breaks between the shampoo and the conditioner, making what used to be a 10 minute process into a 45 minute chore. My lungs were so useless. Brushing my teeth could only be done in my bed. I couldn’t walk to the kitchen to make myself food. Even getting dressed was something I dreaded.

[If there is one thing you take from this blog, please let it be this: Never, EVER, take your lungs for granted. If you smoke, please stop. I’m not trying to tell you what to do with your life. I just want you to realize this wonderful gift that you have. You don’t even realize all the things you are able to do because of those organs in your chest. You’ve been breathing since you first came into this world and you don’t even notice it most of the time. There are people out there literally dying to have the lungs that you have. Please don’t ruin what you have.]

After my transplant, it was difficult teaching my new lungs to breathe again. My diaphragm had to slowly relearn how to expand properly. My legs were weak from not being used much in the past few months. I admit, there were times when I didn’t want to exercise. I wanted to lay in bed all day because it was A LOT OF WORK. Luckily, I had my family, doctors, nurses, and physical therapists to push me. They seemed mean and unfair sometimes, but it was what I needed and in the back of my mind I knew they were right. The great thing about physical recovery is that it gets easier and easier every day, at an exponential rate. Suddenly, months later, you realize that you can walk around all day without getting tired.

Everyone expects the physical change after a transplant. It’s hard, of course, but you know that you will get through it.

What most people don’t realize, and I was definitely one of these people, is the effect on your mental health. This is where recovery gets complicated.

Immediately after surgery, when you are still in the hospital recovering, you obviously don’t feel like yourself. That’s not hard for a lot of people to understand. You are in a weird environment, you’re hooked up to a lot of machines, and you are on a lot of meds. Anyone in the hospital feels out of place and uncomfortable.

But when I came home, I still didn’t feel like myself. I experienced this after my first transplant as well. There was this plethora of emotions constantly circulating in my mind. I would be vibrant and motivated one day, then hopeless and lazy the next. I would feel crushing amounts of guilt and pressure for no reason. I had trouble sleeping up until last week. I would sometimes just start crying and become easily frustrated. I put off going to rehab for weeks because I simply didn’t want to go. I didn’t feel like myself.

It was, and continues to be, a slow process. I mostly feel like myself again, but I still feel the guilt sometimes. I guess it is something like survivor’s guilt. I know it doesn’t make sense to feel guilty for living, but sometimes I can’t help wondering why someone had to die for me to live. I also feel the pressure to be something. People will tell me I inspire them or that I’m a miracle. It makes me feel embarrassed. It’s not that I don’t appreciate the kind words, but it’s hard to think of myself like that when I know how many times I wanted to give up. I’m not always as strong as everyone likes to believe and I sometimes worry about disappointing those who look to me as an example. Is it stupid? Yes. Is it normal? Probably.

My body has been through so much this past year. Being healthy, then sick, then dying, then healthy again takes a toll on both the mind and body. I experienced what it was like to have anxiety for the first time. I became extremely dependent on pain medicine during my hospital stay. My digestive system decided to stop working for a few weeks. I lost a significant amount of weight, making me uncomfortable in my own body even when I should have been celebrating the third chance at life I had been given.

I hit my rock bottom this year too. My body and mind were exhausted and I seriously considered giving up. It was the closest I ever came to wanting to die. It was a couple of weeks before the transplant and I didn’t think I could do it. I didn’t think I would be able to find the strength needed to put in the work that was necessary to get a second transplant and recover. It seemed impossible and daunting and just too much work.

But somehow I did find that strength. It wasn’t a lot, but it was enough to get me through that day and the day after that and the day after that one. I knew that it would be a lot of work, but that the price would be nothing compared to the benefits. Today is the third month anniversary of my second transplant, and I can already tell you that I was right. I had the best 21st birthday a few weeks ago. It was everything I wanted it to be. I’ve been able to make wonderful memories with my friends and family. I get to go back to work in the coming weeks. I’ll be back in school this summer and I’m already planning what my apartment is going to look like in the fall. I feel positive and optimistic, which is something I lacked just 3 months ago.

People will tell me that I inspire them. I’m glad that I have made a positive impact on someone. But at the end of the day, you need to find that inspiration and strength in yourself. Whatever it is that you are going through, fight because you want to, not because I did or because someone else tells you to. Fight because you are worth fighting for.

I recently finished Fahrenheit 451, which I enjoyed immensely. There was one quote that stuck out to me though. It felt personal to my journey, but it also encompasses how I view the human spirit. So I leave you with this:

“But that’s the wonderful thing about man; he never gets so discouraged or disgusted that he gives up doing it all over again, because he knows very well it is important and worth the doing.”

Started From the Bottom Now We Here

It has been a little over two weeks since my last post, which announced the transplant I received three weeks ago. As such, many of you have no idea what has been going on post-transplant. That is totally my fault because I have been putting off blogging. The first week I was incredibly busy with procedures and tests and physical therapy and, most importantly, naps. During the second week I fell into a little bit of a depression and didn’t really feel like doing anything. I don’t know why I was in such a sucky mood. Perhaps I realized how much work I had to put in now that I was breathing on my own without any oxygen. Maybe it was the fact that I was out of the ICU and wasn’t receiving the one-on-one attention I was used to. On the regular floor my nurses had two other patients and it suddenly wasn’t all about me. I know. How terrible, right? Well, I obviously got out of that little bit of darkness, because here I am, writing a blog, which I hope satisfies your Jordan craving.

I moved up out of the dark and dingy basement they call the CVICU last Wednesday and settled into my big room-with-a-view on the 8th floor. As great as it was to move on up in life, I was a little sad to be leaving the nurses and staff in the ICU. I had spent a month with the same people and had formed great relationships with my nurses. Everyone knew me, even if they had never taken care of me. I was something of a celebrity down there, you know. And then I come up here and I’m just another patient. Don’t they know who I am? Don’t they realize I’ve evaded death not only once but twice?!

I loved my CVICU nurses. They really made a rough time much more bearable. They were kind and helpful, not only to me, but my family. They encouraged me to keep pushing and working, even when I really just wanted to sleep the day away. They advocated for me when I couldn’t. Most importantly, they put up with the fact that I couldn’t speak and they were forced to read lips. Sometimes they failed and I was forced to use the dry erase board, but I forgive them for their shortcomings. I’m happy to say that the dry erase board has been put away and no longer represents my voice. The CVICU may be tucked into the deepest part of the hospital, making it seem scary and dismal, but the staff brighten it up, making you forget about the darkness trying to force its way in. I’m forever grateful to the mole-people/staff that work down there.

When I came to the 8th floor, I stubbornly refused to believe that there could be good nurses like those down stairs. I was quickly proved wrong, of course. The nurses up here are just as amazing as those I had in the ICU. Although the patients aren’t as sick, the nurses have more patients to take care of. Their phones are constantly ringing off the hook and they are often running from one room to the next. Many of them have to set alarms on their personal phones to keep track of medicine times for each patient. It’s pretty impressive how theses nurses stay sane. They are just as kind and compassionate, and what’s even better is that many of them know who I am after only a week because of how often I walk the halls. It’s pretty great being famous.

Apparently being a small-time celebrity doesn’t excuse you from having to exercise a lot. I have to walk at least a mile each day, which is more work than you think. My new lungs struggled at first, but now it is much easier. I can even climb stairs! (Kind of. I can climb like two flights before I’m pooped.) They pulled my trache out a couple of days ago so now I can finally speak. I know my fans have been waiting to hear me speak, some of whom have never heard my voice before. They also took out my last chest tube today so I am finally free of all tubes and attachments. I’m unplugged and ready to roll, like an electric Barbie Jeep.

If everything goes right, I will be home by this weekend. I promise to post a blog when I get home so we can all celebrate my return to the real world. After I take a nap in my own bed, of course.

Spoiler Alert

As you all know, a week ago I was placed on the transplant list. On Wednesday, October 28, my dad woke me up at 2:30 in the morning with a sweet little kiss on the cheek. He is such a gentle creature, like a deer in a meadow or a puppy snuggled up in some comfy blankets. I was actually very startled because I was finally in a deep sleep and he had left the hospital hours ago. A little confused, I looked up at him with the signature scathing look that my family loves to call me out on. Then he told me we received an offer on lungs. I was shocked that it happened within 36 hours.Based on my Lung Allocation Score, I had a feeling it would be quick, but not that quick. I refused to get excited because the lungs had not been approved by my doctors. There was a chance that this was a dry run and I refused to get my hopes up, only to be let down.

They prepped me for surgery and by 6 o’clock I was in the operating room, waiting for news that the surgery was ago. I settled in for a nap, knowing it could be hours before I knew anything. At 8:30, I woke up to the surgery prep team informing me that the lungs were good and the surgery was ago. They put the anesthesia through my IV, and I drifted off, knowing that I may never wake up again, but also hoping that these lungs would be the ones to last me for years.

The surgery lasted 8 hours but was successful. Although the surgery is advanced and dangerous, the most difficult part for me is the recovery. I have to teach my body to breathe again. I haven’t breathed on my own in over a month and before that, my breathing was labored and I was on oxygen for months. When you take short breaths, your diaphragm doesn’t stretch out. So now I have to work out my diaphragm and work out my new lungs. I take walks three times a day and breathe for a couple hours off the vent three times a day as well. Both of these things help my lungs and diaphragm improve and adjust to my body. It’s like re-calibrating a machine.

The second worst part is that I am very behind on my TV shows. After I was hospitalized, I didn’t have much time or desire to watch TV. I still don’t really have the time, but it doesn’t change the fact that when I get out of here I will be catching up on my DVR. HOWEVER, it has been very, very, very, very difficult to avoid spoilers. The internet is a terrible place that needs more safety regulations, such as spoiler alerts and a limit on how many porn stars can follow you on Instagram. Let’s work on that, okay?

The Blog That Should Have Been

I deleted Sheena’s post with my drug induced ramblings. It should have never been published. I wanted my first blog post from the hospital to be thorough and explanatory, but I was too doped up to write what I wanted, and Sheena didn’t know what I wanted so she wrote a brief explanation of the situation at the time. What was written wasn’t wrong, but my blog is my baby. It’s so personal to me and I put a lot of effort into producing a story that people want to read that it didn’t really fit into my vision of what this space should be. So now I’ll tell you my story as I envisioned it. There may be parts that are slightly inaccurate or less detailed because in the past three weeks there were times when I was so sedated I don’t remember whole days. I guess I’m not the most reliable narrator, but it’s the truth even if it didn’t happen.

On September 30, I went into Florida Hospital for a bronchoscopy. My new doctor, Dr. Gries, wanted to see if there was any rejection, infections, and condition of my lungs. Although the bronch itself went well, the trauma of the procedure caused my lungs to totally fail. What else is new, right? They attempted to fix the situation by putting me on the CPAP, but my body was fighting the machine and the team immediately made the decision to intubate me, which is when they stick a tube into your mouth and down your throat to help your breathe. I was sedated and when I woke up that night, I was admitted to the hospital with the knowledge that the only way I was leaving was if I placed on the transplant list and received new lungs.

However, for that to happen I would have to go through a two-week cycle of treatment that involved chemotherapy, plasmapheresis (a process in which the liquid in the blood, or plasma, is separated from the cells. In sick people, plasma can contain antibodies that attack the immune system. A machine removes the affected plasma and replaces it with good plasma, or a plasma substitute) and an IV Immunoglobulin medicine to fight the antibodies that caused my rejection. I would not be allowed to be re-transplanted with antibodies because they would just attack the new lungs, thus making the life-saving surgery pointless.

So for two and a half weeks, I went through intense therapies that made me feel pretty crappy with the knowledge that I may not even be listed after all was said and done. I was having anxiety attacks every morning, physical therapy in the afternoons, and treatments in-between. There were times where I felt like giving up. I felt like it wasn’t worth it. I was going through a lot of pain and discomfort and there wasn’t a guarantee that I would receive a transplant. Even if I did receive lungs, I might not survive the surgery or recovery. I felt weak and defeated. I was so close to giving up.

But then I remembered the last year and a half. 2014/early 2015 was the best time of my life. I felt normal for the first time. I bought my first car with my own money. I finished a year of college. I finally dated people. I made great friends. I made plans for my future. I finally knew what it was like to live like I had a future. When I remembered how happy I had been, I realized that all of this would be worth it.

About a week and a half ago though, after finishing my therapies, my breathing became very labored and fighting the ventilator. They sedated me to relax my body, which allowed the ventilator to get back in control. After doing a CT scan, they realized my right lung was collapsed and decided to insert two chest tubes. My chest felt less pressured, but the chest tubes cause a lot of pain, so it was a catch 22. A few days later, my CO2 levels rose to very high levels, and the decision was made to place me on ECMO, an artificial lung machine, was made. I was moved down to the CVICU to await the news about being listed.

For the past week, I’ve been in the CVICU on a ventilator, with two chest tubes, reliance on the ECMO, and a feeding tube.I get tired easily. I love the idea of visitors, but some days are good and other days are bad. Sometimes I’m just not in the mood for visitors and it gets overwhelming, especially if it is someone I don’t know too well. I can’t speak because of the trache, so the visitor has to be comfortable with that as well. I know people mean well when they want to come visit, but sometimes the best thing is to just text me or wish me well. I also enjoy receiving cards (you can’t send flowers or other plants because of allergens). I appreciate everyone’s thoughts and prayers, so don’t take it personally if I ask you to not visit me on a specific day. The thought counts the most to me.

Now to the good news.

My transplant team came in today to inform me that they have decided to list me. My Lung Allocation Score is 91, which is really high. I could be transplanted within the next few weeks, so now its just a waiting game. I’m excited but nervous. Its strange being in this situation again. I know what waits for me on the other side of the surgery. I know that it will be tough and painful, but I also know that I can do it. I’ve done it before, so that eases my fears a little.

I want everyone to send good vibes to my future donor. You all call me amazing and inspirational, but its the donor and his/her family who deserve all the credit. They make the biggest sacrifice to save a stranger’s life and I don’t think there is anything more incredible than that.