You know you go to the hospital a lot when you have a favorite volunteer lounge pianist. My favorite is the 110 year-old, white haired man who plays jazz without any sheet music to reference. He can be found hunched over, eyes closed, tickling the ivories next to the Starbucks in the lobby of the hospital. I passed him walking to my appointment last Thursday and it was a gentle comfort to me in spite of the nerves I felt.
I always get a little nervous for these appointments. Let’s face it, the whole week leading up to it, I’m usually anxiety-ridden. Not for any particular reason. Mostly, because these appointments are another reminder that I actually have a life-threatening disease (a fact that, despite the breathlessness and oxygen tubes across my face, I often forget). The unknown is always a scary thing. You’ve heard the phrase, the devil you know is better than the devil you don’t. Well…there’re a lot of little devils living in my lungs right now and we’ve become rather close. First name basis. I don’t have time to make any more devil friends. I’ve learned that sometimes the less I know, the better, or rather, the easier it is.
But, I didn’t sign up for this life knowing it would or should be easy. Sir Francis Bacon said, “Knowledge is power!” (and I better listen to anyone with the word “Bacon” in their name). So for every appointment, I put my big girl panties on, ask the eagle to help my feet to fly (maybe I just watched Pocahontas), and I show up ready to face the facts.
My doctors determined that I have reached the point where various “band aid” treatments are not improving or maintaining my health and it’s time to meet with the lung transplant team.
Henry: “So…we’re at that point?”
Me:”I didn’t think it would be happening this soon.”
Doc: “We only have your past 6 months to go off of as far as timeline goes. 6 months ago you didn’t need oxygen. Today you’re at 6+ liters. We’ve tried everything we know and there hasn’t been any improvement. If this follows the same progression timeline as the past 6 months, then 6 months from now, things could be looking a lot worse. It’s time we start having these conversations.”
I am not currently on a transplant list. Why, you ask? Well, because these sort of things are not taken lightly. What doctors typically try to do is keep you with your God-given lungs as long as possible, because while Pulmonary Hypertension is one thing, lung transplants are another “devil” all together.
Lung transplants are the less popular, ugly step-sister of say the heart or kidney transplant. 2 in 10 people die within the first year of transplantation and only 50% make it 5 years. There are a lot of reasons for this, but the main ones are rejection and infection. Our lungs are constantly in contact with the outside world, sampling the atmosphere with every breath we take. The immune suppressant drugs required post-op to prevent your body from rejection, makes it really easy to get sick. God-given lungs are normally our first line of defense and act as a barrier to such illnesses. With transplant lungs, a tiny cold to an otherwise healthy person can be fatal for a transplant recipient; especially when your lungs are a foreign object your body is trying to reject.
Yeah. So. Like. Yikes, right? That all sounds really scary. And yes, there’s plenty to be scared about. But there’s also hope. A new pair of lungs could mean a new life for me. And there are a select few, a small percentage, who live decades longer with their new lungs. I can hear Larry from Dumb and Dumber, “So, you’re tellin’ me there’s a chance?!” I could have children. I could dream. I could dance. I could sing. I could be a wife, mother, and general life-liver. I would probably just go through a lot more bottles of hand sanitizer, and face masks, and vegetables.
When your only other option is to wait to die, it would seem the answer is clear. However, I know that making the decision to transplant is a life-altering decision. And it still wouldn’t guarantee a grey-haired, sit in your rocker, watch your grandchildren play, life. Crazy. Even as I’m writing this, I’m thinking…”this is crazy.” And yes, I’m scared and my heart is heavy and I think about the person who doesn’t know that they are going to die so that I can survive, every day. As my transplant doctor said this morning, “you are waiting for someone else’s tragedy so you can live.” I can’t even begin to describe how humbling that is. It’s like a literal manifestation of Christ’s Atonement. Without that gift, my life would eventually come to an end. And it would happen sooner rather than later.
I have an important decision ahead of me. What brings me comfort? Knowing God is in control. He is! There is absolutely nothing about this that puts me in the drivers seat. There’s is nothing I could have done to prevent this disease and there is nothing I can do to keep it from claiming me. But if God feels I still have work to do, He will provide the gift of life for me and I will go on, to live another day, to fight another fight. And that’s it. All He asks is that I surrender to His will and have faith in His plan for me. Because it’s probably better than the plan I have for myself. And maybe that 110 year-old jazz pianist is actually a guardian angel sent to make me smile and assure me, “The best is yet to come and babe, won’t it be fine?”