Wednesday, April 11, 2018

Wanted: My Perfect Match

Wanted: My Perfect Match

At 26, I wait and pine for someone I’ve never met; my perfect match. With any luck, someone on the shorter side, with a petite frame similar to mine. I am not picky about gender, but I hope he or she is kindhearted and that some of their goodness will permeate into me. I can be overly stoic and independent—some might even say a little cold and elitist. I don’t try to be, but years of hurdles have made me so. I have standards that can be hard to meet. Sadly, I’ve been through this agonizing wait once before, and after finding what I hoped was my perfect match once, I believed that I would never have to go through this search and torturing wait again. I would never have chosen to put myself through such suffering a second time.

When I was 19, for six months I lay in bed wrapped in my heavy Pottery Barn cornflower blue comforter with red flowers stitched into it, hoping that profound love—through a selfless act by someone I’ve never met—would save my life in time. Mostly I slept through life, with my two dogs, Max and Pazzo, always nestled close to me. They were the truest form of love I had ever known. They stayed by my side, all twenty pounds of them combined—in my bed, or outside the shower as I sat on the wet white plastic floor—while warm water and salty tears simultaneously dripped off me. And under my feet if I momentarily could muster sitting at my desk to scan a few emails in my attempt to stay connected to the outside world.

On a good day, I would watch Law & Order marathons in my dim bedroom between napping. These perfect wrapped in a bow start to finish stories were a wonderful distraction. On a good day, I fought back tears that allowed me to remember I was human and actually alive. On a bad day, I did nothing while I waited. I barely even opened my eyes to the world. I didn’t care to see my surroundings. I didn’t care to see what I was missing or possibly losing.  

It all sounds like a normal story: a young girl moping around, spending her life waiting for her perfect match to complete her. But my story is actually not very typical. I was not waiting for the great love of my life. Instead, I was waiting for my perfect match in an organ donor because my lungs were failing me. I needed a match in size, blood type, tissue type; not a match in physical chemistry, or personality. I wasn’t looking to fulfill some little girls’ checklist of love. I wasn’t looking for someone with dark intense eyes, a high intellectual capacity, or a certain amount of money. I was looking for a healthy person with perfect lungs that would soon breathe inside my chest and keep me alive.

As I waited on the lung transplant list at Columbia Presbyterian, my mom was my best friend. Anything I was capable of doing she did with me. Anything I was not capable of doing she did for me. We were the ultimate pair. She wished more than I did that my perfect match was coming. She prayed and yearned harder than I did. Her life depended on it just as much as mine. She was not living the normal mothers dream either—wishing for a perfect man to come sweep her only daughter off her feet. She was praying that our phone would ring telling us a donor match had finally been found after years of lingering between death and life.

And for a while, it seemed like our prayers had been answered when my perfect lung donor match came into my life on November 12th 2003. He was a young athletic male. That was the extent of what I knew about him. But his lungs gave me a normal lung capacity for the first time ever. I had a lung function of 100%. I’d been struggling to breathe my entire life, on a continual quest for air. I became a normal person almost overnight thanks to my seemingly perfect match. I could breathe.  

My first donor was my soul mate in life. We had the perfect relationship for five years. We got along famously. We rarely ever fought—only once, a month after my transplant, I had a minor episode of rejection that was quickly taken care of. Because of him, I was able to go back to college. I could walk to my classes without stopping to sit and catch my breath. Previous to finding him, I would stop and sit on any bench I walked by and pretend to look at my phone when I was really waiting for my lungs to catch their breath and my heart to slow down. I didn’t have to take the elevator up to my first floor door room anymore and worry that people crammed in there with me just thought I was being lazy. I could go out with friends. I wasn’t trying to conceal an IV ball with antibiotics pumping through me while trying to decide between a, b, c, or d on an exam. I didn’t have an oxygen tube fixed to my face and a tank dragging behind me. I graduated college. And best of all I could laugh without laboring to breath. I could cry without a coughing fit. I was normal—which is all I ever wanted to be.

And then, five years into our harmonious union, something fatal happened. My chest felt tight. My lungs felt restricted. I was short of breath. I knew something wasn’t right. Initially when I was going through the transplant listing process at 16 I thought the only way this would be worth it was if I got at least 10 years more out of having a transplant. I needed ten good years. But my body had other plans. It reflexively craved the DNA of my old horrible lungs. It very quickly started rejecting my donor lungs. And swiftly they started to fail. It was a horrible and terrifying breakup. I lost lung function with each month that went by free falling to death again. The oxygen machines returned. The feeding tube I fought for most of my life eventually came when my 5’2” frame got down to 55 lbs. My once perfect lung match that ironically allowed me to think about everything else in life but them, no longer worked well enough to allow me to support my own weight. I had to start using a wheelchair, or worse be carried. My lungs occupied my every thought once again.

My doctors told me that if I wanted to live I would have to go back on the transplant list and undergo a second double lung transplant. Did a second match exist for me? Could I wait again? I wasn’t sure it was possible to love another the same way I loved my first lungs. Would any other love be as good as my first?

Here I was, nine years after my first lung transplant, in the same devastating scenario. This time my wait for a second donor match seemed crueler and longer than my first. And it was. I had been through this before and I knew what to expect, but knowing what was coming made it worse. I had experienced living for the first time and that had been taken away. I knew what it was like to suffocate every day and that was coming again.

My donor gave me a life I had never experienced or even dreamed of—seeing life through him was incredible. The last three years we had together, while I had chronic rejection, was a slow and painfully heartbreaking time. It was hard to admit our time was over. I was in denial for as long as possible. I kept thinking we could make this work somehow that by some miracle we could mend things. But it was time for me to move on. If I wanted to live I had to be dramatic and drastic—I had to cut him out of my life. Literally. 

I waited fourteen months for my second transplant; couch bound this time, my criteria the same as the first. I was not very picky; in fact, I was probably more accepting this time. I was even willing to take a former smoker into my life, this idea would have made me cringe the first time around, I would not have even considered it. I wavered a lot during this time period. I feared I would never find a match. I was in one sense scared enough to almost be hopeless, paralyzed with panic, but in another sense hopeful to return to breathing.

On February 15th, 2012 I got a call saying a donor match was found, after 4 false alarms and little life left I had my second transplant. It was hard to let go of my first pair of lungs. It was like any breakup – letting go was painful. The same surgeon who performed my first transplant also performed my second. It took him over ten hours to get all remnants of my first lungs out. I guess it was hard for both of us to let go. Any complicated breakup leaves scar tissue behind. My second pair of lungs came from a very young girl, and I have high hopes we will be together for a long time.

Now at age 31 I can grasp the enormity of both my miracle matches, and the reality of what I have been though, better than I ever have. I understand what they have both given me. I love my donors; both of them. It is a special unparalleled kind of love I feel—a rare eternal unwavering love that I can’t really compare to anything else. I love my donor families—on the worst day of their lives, they let go of someone they loved very much in order to give life to someone else. I know what it is to have a soulmate inside me. My donors have both melded into my body, connected quite plainly to my heart, and into my life forever. Love has saved my life time and time again.

I cherish the gift that has been given to me twice. I can only pray this pairing lasts as long as possible. I will continue to live with the thought that miracles happen and that love saves lives—because it does.

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