Is this happening?
Is she the one?
What else is there?
What do I want?
Is it the right time?
I spent time trying to find answers and experienced momentous changes in my life in 2017. I got married on a glacier in Alaska, completed my quest to reach all 50 states, found a home to buy, and decided that it's time to have a lung transplant.
Amanda and I had a brilliant adventure in Alaska - you can check that out
here. We also found a home to buy this year, which we are in the process of doing. I was an obsessed madman in October and November with the house hunt. At points my single-mindedness stressed out Amanda. We're close to the closing date so it'll all be worth it. It was the right time for us to find a new place for many reasons. At our current place, when I'm not feeling well it's a struggle walking up the driveway and then up to the second floor. The new house will have a flat walk from the driveway, which is much closer to the front door, and far fewer stairs.
How do you know when it's time to have a lung transplant? Well, that's a question that has been on my mind for the past decade. I found out I had cystic fibrosis when I was 17 and lung transplant came on my radar around the time when I was 25. Now, I'm 37 and for the past several years it's required serious consideration. The past couple months I've been examining my life through the lens of that question.
When I feel good life is more manageable, but when I'm not feeling well life is a struggle. I'm out of breath from the when I start to get dressed until I've sat at my desk for a few minutes. Getting in and our of the car with my things, going up the steps and opening the door, walking down the hallway are all things I used to be able to do pretty normally, but now I'm out of breath the whole time. I have to meticulously plan everywhere I go - where will I park, are there stairs, how's the air quality, will anyone be smoking or having a fire in the fireplace, do I have to bring my portable oxygen, will I have to wear it, how long will it last, is my oxygen machine going to be loud during a quiet part of the movie, are there any pets that'll irritate my lungs and make it hard to breathe, am I staying overnight, is there a private room, is there a plug, if I get a little too much sun will I be drained of the little energy I have, will my car get snowed in because I can't shovel, can I carry this, will it spoil if I leave it in the car for Amanda to bring in, can I handle it today or do I have to reschedule it?
When I think back ten or even five years ago, I did a lot more. I had season tickets to the Red Sox and the Celtics, went to concerts, and socialized much more. Even though the past year has been amazing in many ways it has also been the most difficult physically. This past year I've lived next to one of my best buddies but I've barely seen him. I'm on my fourth course of IV antibiotics since last December and I threw my back out twice due to my decreasing level of activity. I save my energy for getting to work, especially since I'm out of sick days, and being with my wife. During the warmer months this year I focused my energy on playing golf because it is somewhat of a social activity but mainly because it's one of the few remaining forms of exercise I enjoy and exercise is critically important to my health. I was proud to shoot an 81 on one of the few times I actually managed to make it through 18 holes. Imagine what I might be able to shoot if I could actually breathe and not be dizzy or huffing and puffing when trying to precisely line up my putts on the green.
Due to the struggle with day-to-day living I recently came to the conclusion that I'm ready to move forward with lung transplant. I always figured that I would know when the right time was and now I do. I also wonder if I was the last to know. It's a process - it's not like you just head to Mass General and say cut these things out me. I have to do a series of tests and system checks that will take a couple of months and then I have to be deemed a candidate and listed, and the average list time is 39 days. And then recovery time is up to 6 months, but I've always had strong healing powers. My wife has wrapped her head around the idea and is not as nervous about it since she came with me to one of the appointments.
How long will you live? People always want to know that no matter what type of medical issue it is. It makes sense. It's an instinct, a curiosity, a fear. But it's the wrong question. Nobody knows the answer to that question. Any answer that you find is going to be wrong. Any statistic or expectation is about other people and their experiences. You can look at the statistic that says 50% percent of people are alive at 10 years post-transplant. How do you discern your life span knowing that statistic? Is it as simple as - are you a glass half full or half empty type of person? Do you flip a coin? Who knows. The lung transplant coordinator referenced someone that was going on 26 years. Is that how long it will be? That person going on 26 years post-transplant was transplanted in 1991! Things have come a long way since then. The truth is nobody knows. Statistics are the experiences of other people. Statistics can become a self-fulfilling prophesy if you're not careful with your mind and I've been trying to avoid them my whole life. If you get an idea stuck in your head it can be hard to get out. It can conquer you and take over. Sometimes whether you know it or not. You have to remain unattached to an outcome and stay in the present. I intend to have my own experience.
I haven't really thought much about what it might be like post-transplant. I've let my mind wander a little bit secretly but never for long. At the initial presentation I asked what kind of lung function could be expected and the transplant coordinator said 100%. My mind can't wander too far about that because I don't know that I've ever experienced anything close to 100%. Is that what it was like when I was a kid? I don't know. Cystic fibrosis is genetic so I've always had it. The past many years I've been working with a lung function of about 25%, so the possibility of full lung function confounded me when I heard that. A life like that is either a distant memory or one that I have never known.
2017 brought profound changes to my life and I look to 2018 with fresh hopes and a renewed spirit because I was born in the spring and nothing feels as revitalizing as a new beginning.
