August of 2012…
After years of living in Florida and hearing all about the infamous Mayo Clinic, I had my initial appointment as a Mayo Clinic patient with a pulmonologist. This was all routine as I knew I would need to be referred to the transplant center by a pulmonologist. It all became very real and even as the “manly man” I am, I didn’t dare portray any signs of fear or doubt. I knew I needed to be strong. Both mentally and physically if I was going to get through this. The time had come…I was now a patient. I remember receiving my printed itinerary in the mail a couple weeks prior to my evaluation. I think I killed a tree with all the paper that was in that envelope. Here I was, all of a sudden drowning in doctor’s appointments it seemed. I want to say it was something like 23 tests and procedure just to figure out what my “score” for listing would be. I won’t lie, it almost seemed as if there wasn’t much time before I was D-E-A-D dead! After about 2-3 weeks of testing, driving back and forth every day, being there some days from 7 am to 5 pm, my mom and I were just exhausted and to be quite blunt sick of the hospital. The funny thing was that we were just getting started…
I was listed for my first lung transplant on August 28th, 2012. A right single lung transplant! Shit just got real! The one thing I learned early in this craziness is just to find your “why”. What I mean by this is your reason for fighting this disease in hope of a better life! When I use the word craziness, I am talking about some of the statistics that are out there surrounding lung transplants and donor numbers. You know…only 1 out of 3 patients waiting for lungs will actually get their call for transplant. As of this moment, 977 people across the United States are waiting for new lungs. Simple math and that’s only a little over 300 people that will receive their blessings. Whats even crazier is that more than 90% of Americans support organ donation, but only 60% are registered donors. It’s such a simple task. Sign up RIGHT NOW!
One of the things we were told by the great Dr. Keller was to trust the process. I remember my mother and I sitting there and him telling us “when its your time, the stars will align and everything will be perfect”. Typing that still gives me tingles down my spine. He couldn’t have spoken truer words. During my wait, I remember spending so much time running different scenarios through my head it was exhausting. I would get phone calls and texts from people and I know they all meant nothing but the best but the same questions and statements become old LOL. For example, my favorite one is “I don’t know how you do it”. Well…I do it for many reasons. I do this for my family, my friends, and for all of you who have given me so much love and support over the years. I do it for the other 2 out of 3 people who won’t get a chance at a new lease on life. I do this to honor those that have passed from complications and their families. You’re sitting there thinking “why doesn’t he just do it for himself?”. I feel you…the reason is simple…it’s all out of my control. I can only worry about the things I can control in such a fragile state. I found it was easier for me to keep you all from worrying. I knew if I became vulnerable then panic would set in. I’ve never been a quitter when faced with health adversities. So next time you find yourself even think “how do you do it?”, it’s simple…our choices are fight or roll over and die. Here’s my logic…if I’m still blessed enough to still be on this side of the flowers, then I owe it to God to fight for tomorrow. I did that every day for 5 and a half long months. Let me tell you, the days feel like weeks, weeks like months, and months like years. Every time the phone would ring I would jump thinking it was “the call”. Speaking of phones ringing, I remember this specific day like it was yesterday. It was the day before Thanksgiving 2012 and my family was all visiting from NY in our tiny little 2 bedroom apartment on the Southside of Jacksonville. My phone rang and it was Mayo Clinic…I remember almost shitting my pants in excitement. I cautiously answered and it was my coordinator just wishing my family and me a happy thanksgiving and that we were being thought of. I’ve got to be honest, looking way back, it was such a nice gesture. Let me take you back to that day! I was like, who thought it’d be a good idea to call a patient who’s desperately waiting for a life-saving organ from the same number we’re supposed to keep an eye for! I wasn’t feeling all cozy after that call but my family was quick to intercept the negative energy and put my back into focus.
Some days were harder than others. I had a lot of days of doubt. I remember thinking every morning the sun was out, “today’s the day!”. Rainy days were the worst for me. They really challenged me to get out of bed and do anything productive. It was to the point where I would not go to pulmonary rehab if the weather wasn’t to my liking. Everything became a chore. Taking a shower, drying off, getting dressed, all the little hygiene things, and then actually getting ready to walk out the door was exhausting. Even though it was a tough and dark time for us, there had to be some positive highlights in there…right? Well of course! The best memories I have from that time was in December. My sister got married and I was able to be there for their special day! Now, that wasn’t a simple task by any means. I wasn’t allowed to leave a 3 hours radius of the hospital. In order for me to travel that far (6-8 hours), I had to remove myself from the list I fought so damn hard to get on. Naturally, the doctors and my mother were pretty quick to state their concerns! Once again, for me it was a simple deal…either I go to this wedding or promise me I will be able to see my other 2 sisters get married. That was the end of that conversation and off we went to the Keys. We strapped every bit of oxygen we had into the back of my Jeep and never looked back. This was also the weekend I found love. Weird I know. My beautiful wife Emilie agreed to be my date for my sister’s wedding. I still joke about it with her whether or not she was my date or if she was just there to make sure I didn’t keel over. I just couldn’t believe she flew all the way to Florida to be my +1. All joking aside, I knew that weekend I was marrying this woman. She’s the most loving and caring human being. Boy am I glad she’s not only mine, but also an amazing mother to our beautiful 3 children. She was a blessing in disguise. MY WHY!
One thing I think people struggle with while waiting is they can’t find the “why” in them to continue the battle. That is one thing I will never go without. It’s just not me. It’s not who I was raised to be. My “why” is my family. Plain and simple. I want you to reach out if you feel like you don’t know what your “why” is. Send me a message either through an email! I will help you see it. It’s nothing but perspective and thought process. You’ve got to have faith it will happen. Don’t blur your vision of what life after transplant is going to be like and all the amazing things you’re going to accomplish and honor your donor and their family. Perspective! So simple but so complex when we crowd our brains with negative thoughts. Pity parties are fine…every so often. Don’t fall into the rut of “why me?” and start thinking “why not me?”. Skys the limit if you are a mentally strong individual. That’s one of my favorite things about fellow recipients is hearing them talk and how positive they are not only because they’re alive and breathing but because they’ve trained themselves to be like that while waiting. That’s what causes us to feel all inspired.
Don’t underestimate the power of positivity! Until next time, stay blessed and never stressed.