Finally Listed

Lately I’ve been trying to digest the idea of my impending lung transplant. Every other thought in my head is of the transplant. Questions that I never thought I’d have to ponder now swim in my consciousness. The most tiny detail can derail an entire morning. I find myself snapping at unrelated problems- those that would have never been an issue on their own but echo heavily now in the light of this enormous event. My fingernails and cuticles have been anxiously chewed to the point that they’re bloody and raw. I seek reassurance that this will all turn out okay while simultaneously dismissing such solace for fear of being too optimistic. In short, I feel like a basket case.

While hospitalized at Madison’s UWHC in October, my doctors and I collectively decided that I didn’t need to get put on the lung transplant list immediately. I was sick but not critically so. This was a relief to me, seeing as I was still having a hard time getting on board emotionally. I was torn between wanting to be listed ASAP so I could be that much closer to taking my first breath with healthy lungs, and hoping to delay this entire process and push it all to a corner of my mind. It seemed I had more fear than faith. I was in need of a sign, a symbol, something that would tell me unequivocally that it was the right time to get listed.

I hadn’t even been home from my October stint at the UW hospital for a month when it became obvious that I needed to be admitted again. (This latest span ran from Nov. 24th to December 9th ; with another two weeks under my belt, I’m back home awaiting the New Year.) Getting sick again so quickly indicates that my body, and the germs that infect it, are no longer responding to the IV medications that are available. There’s not much any doctor can do anymore for me. It’s scary to think that I mostly likely won’t “get better” to the extent that I used to. I might just maintain a very meager baseline. It’s quite possible that until I get my transplant, I will mostly be homebound (or hospital-bound when I’m acutely sick), struggling to breathe, needing to wear oxygen, clinging to the hope that I will get “new” lungs in time. Which also means I’m inadvertently hoping that someone will no longer need those lungs, which means some family’s awful tragedy will be the answer to my family’s prayers. Miraculously, I can be given new life where another life has ended.

After doing a lung function test when I first arrived at the hospital, I learned that my numbers were even lower than when I was sick last time. Because I felt so shitty, I knew that these numbers were appropriately representative of my worsening condition. They reflected the persistent wheezing and gurgling of my labored breathing; the loud, harsh coughing; the inability to physically exert myself in any way; and the copious amounts of phlegm that accompany each cough. If I had needed a sign that it was time to get listed, this was it. My mom and doctors voiced their opinions, which coincided with my own thoughts- I should list now before I become too critically ill.

When I told one of my transplant coordinators that I was ready to be listed, they contacted my insurance to get approval, and had all of the “i”s dotted and the “t”s crossed. I officially accepted the offer to be put on the transplant list on Tuesday, December 9th. I felt as if I should have had to sign my name in blood in some momentous ceremony. All I did was give my verbal consent. A couple of emotion-charged tears were shed by more than one, and I immediately began going over the possible scenarios that could take place- both good and bad. Since that fateful moment, I’ve been struggling to put the details out of my mind and just remember that this transplant is going to save my life, and make it worth living. Period.

Life will never be the same now. Until the actual surgery takes place, I will be tied to my cell phone, obligated to answer any and all phone calls. Because there is only a four-hour window for me to get to UWHC, I will need to be ready to go within approximately 30 minutes so I can drive an hour to a nearby town and get on a life flight with a service that I’ve been in touch with. From there I will fly about an hour to Madison. (Unless there is extra time to drive the 5 hours that it takes to get there.) Once I get to the hospital, I’ll hand my life over to a team of experts and pray that all goes well. What happens then is largely unforeseen…

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1 Response to Finally Listed

  1. Ellen McCarthy says:

    Thinking and praying that you will get your new lungs soon. Always thinking about you…peace.

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