Wednesday, September 24, 2014
Tomorrow is a big day for me... and for a family that I've only dreamed about meeting. Tomorrow will be ten years since my double lung transplant surgery. Ten years ago a family was having to say their goodbyes to someone they love, while I was hoping for the best, in my heart I was saying goodbye to everyone I love, completely unsure whether or not I'll ever see them again. During the past ten years I have not had a single day go by that I haven't thought about my donor and his/her family. I have periods of guilt and grief for the loss of this person I've never met, but over the years I've come to understand that that's always going to be a part of me and I'm okay with that. I'm alive today because someone chose to give the most selfless gift a person can give... When it was their time to leave this world, they wanted to be an organ donor and save lives. Turning a very sad, dark time into something bright and beautiful. It just so happened I was the incredibly lucky person who received this hero's lungs. Every breath I take is through their lungs, every word I speak is spoken with the air my donor is giving me.
Over the course of the last ten years I've had to learn how to manage this new life I've been given. Every transplant patient in waiting is told that having a transplant does not make you healthy again; you're actually trading one disease for another. That couldn't be more true. In some ways, having my CF lungs was easier because I spent my entire life with them... I knew all the tiny clues my body would give me when it was time for a tune-up (something we CFers call a hospitalization w/IV antibiotics and vigorous chest physio therapy). Little surprised me with my CF lungs. After my transplant I've had to learn what to look out for that could mean infection, rejection, and in my unique case, my airway collapsing. I've had to learn how to constantly watch everyone around me and recognize when I see someone with a little sniffle or a cough, and as politely as I could, make some distance between them and I.
In the last 10 years I've had a LOT of ups and downs with my health. I've been able to either overcome or learn to live with every difficulty that's come my way, from tachycardia, neuropathy, chronic lung pain, severe bronchial stenosis that requires balloon and laser intervention as often as every three weeks, to two occurrences of chronic rejection, the list could go on for quite a while, but I won't bore you with all that. What I'd like to focus on is the ups I've been able to experience in the ten years since receiving my gift of life...
I took two semesters of ballroom dance lessons with Benito. I found something inside myself while I was learning the Waltz and Fox Trot... For the first time in my life I was good at and enjoyed a physically demanding activity without having to stop every minute or two so I could catch my breath. When I lost so much lung function with my first bout of chronic rejection, I had a hard time giving up dancing. Even now, with my 26% lung function you can catch me dancing the cha-cha or waltz with my dog or broom. Dancing became a real passion of mine and I look forward to taking classes again if/when I'm retransplanted someday.
I have been able to watch my niece Anna grow into a beautiful, intelligent young lady. She is a mini-me and it makes me so happy to talk about books with her. I've watched my nephew Tyson grow from a little baby to a big hearted, skateboard loving, little boy who does whatever he can to make an audience laugh. Two and a half years ago Benito and I got to welcome into the world our niece Maricela. She is so full of life and giggles that just spending 5 minutes with her will be enough to turn your bummer day into a great one. Benito and I are so blessed to have them in our lives.
This October Benito and I will be celebrating 6 years together. Due to all the craziness of my health insurance we can't get married any time soon, but that's okay. We bought our first home together 2 years ago and we feel pretty content with how things are between us. Don't get me wrong, when we figure out how to marry and still have full coverage insurance we can afford, we're going for it, but we don't feel like we're missing out on anything a married couple would have except shared taxes and a piece of paper.
Last month I finally worked up the strength and courage to write a second letter to my donor family. I wrote a letter when I was one year post, but I will never know if that letter ever made it to the family. The letter I sent last month was given to someone a friend put me in touch with who works on the recipient side of things, so she knows whom to get my letter to that will be able to pass it on to my donor family. In all honesty, writing that letter brought me a ton of peace and happiness. It's very important to me that ten years after the loss of their loved one, they know that I'm still alive and kicking, grateful for their loved one's gift.
I considered using this opportunity to update on my current health going-ons, but I decided against it, wanting this post to be purely about my 10 year Breathday. I'll post an update in the coming week with everything that's happened in the months since my last update. Just know that I'm home, I'm "stable", and I'm in pursuit of a hospital willing to evaluate me for retransplant.
The last thing I really wanted to say to all who read this is THANK YOU. In the time leading up to my transplant, the time I was living in San Francisco recuperating from my transplant, and all the time since, I've been blessed to have so many true friends and family help wherever they could. I could not have gotten this far without the love, support, and inspiration I received from those that love me. Thank you for these ten years of love, thoughts, prayers, and encouraging words when I feel overwhelmed and tired. I will Never give up while I have your love pushing me forward.