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.