Friday, May 1, 2015

The More Things Change...

The following was first published in the March 2014 University of Michigan CF Newsletter.  It details my experiences following a serious CF exacerbation that occurred in February 2013 and the process of getting placed on the lung transplant waiting list, as well as how my family and I handled the wait itself.

In Case You Too are Worried about Adjusting to life in San Marino: 
A reflection on the past 11 months

by Evin Green

Several years ago, a friend of mine moved with his wife to her native country of San Marino, a small nation within Italy.  He was nervous about the move, and once the idea became a reality, he balked.  How could he really go through with this-- leave behind his family, his friends, sell most of his personal belongings, and rely on people like me to send him VHS tapes of Lions games?  He also worried about adjusting to life in San Marino, a country where he didn’t speak the language and had no guarantee of finding a job doing something he liked.  So he went to his wife with his concerns.  He asked her, “How am I going to do this?”  She thought for a moment and replied, “You just do it.”

We have often laughed since then at how utterly unhelpful and yet remarkably true her answer was.  Eleven months ago I had no idea that it would become advice that applies to me and is worth sharing with others.

Until last February, I had lived a remarkably “normal” life.  Aside from visiting my doctor every three months, taking pills before I ate, and taking oral antibiotics a few times each year, the first three decades of my life with CF had been very quiet, medically speaking, with one major exception.  A few months before my wedding to my incredible wife, Kayla, I became gravely ill after overlooking the symptoms of pneumonia in favor of pushing through the final planning stages for our big day.  Amazingly, I recovered quickly enough after spending 5 days in the ICU that our wedding plans were unaffected.  After that, I had more frequent issues related to my CF, including rounds of at-home IV antibiotics that were necessary two or three times each year.  Still, CF did not hinder my career as a teacher or disrupt summers filled with camping and traveling.  Every time I had a health setback, I bounced back quickly and felt just about as good as prior to it.  I always felt so lucky; I never stopped to ask, ‘Why me?’  Fast forward to Feb. 2012.  I was teaching High School English for the 9th year and experiencing the amazing joy and considerable stress of having a 4 year old son.  Mid-Winter break was looming and I finished out the week knowing I wasn’t feeling well, but assumed I would go on IVs and be in tip-top shape after a week of meds and rest.  But on the Sunday before break officially began, I took the short 20 minute drive to the hospital because I was short of breath, and unknowingly began a journey that I am still on--my life hasn’t been the same since. 

Instead of leaping right back into my routine, I was still hospitalized when school resumed.  One of my doctors mentioned the word “transplant” but it felt more like a notion than a reality— I just knew I’d be my usual self sooner than later.  After a seven day hospital stay, I returned home on continuous supplemental oxygen, which I mistakenly believed I would no longer need after just a few days.  My old notions of what “getting better” was and how quickly that would happen dissolved when my doctors confirmed for my wife and I that yes, my best option going forward would be a lung transplant.

So, now, as I type this, I am still on all the same meds I was before, plus supplemental oxygen (5Lpm).  I have not been able to return to teaching (it took me until the better part of April to come to grips with that reality). I went to almost every wing of the hospital during the three months of getting tested and checked-up (but I made it on the transplant list and can give informative tours).  I use the in-store scooters when I am on long shopping trips (they turn at amazingly tight angles).  I have missed a few holiday gatherings and family trips because they were more than 4 hours away from the hospital (but seeing pictures of the events wasn't half bad).  I’ve had times when getting dressed makes me short of breath (but I looked sharp afterward, so it’s worth it.) And I have dealt well with the waiting (for the call and the upcoming Spider-Man movie).  Above all, I have somehow been able to remain the happy, quick-with-a-joke, kid-at-heart person that I have been my whole life.  And that has very little to do with me and everything to do with the support I have had from my wife, my son, my family, and my friends.  They have kept me sane, kept me smiling, and kept me motivated.  My doctor has said when you are on the transplant list, you are training for a marathon, preparing your body for something it wasn’t designed to go through.  While I’m in charge of taking care of my body, it is my support network that takes care of my soul. 

My wife and I have talked about how it is possible that we are in such a good place despite a year filled with bad news, huge changes, increased stress, and redefined norms.  We borrowed the answer from our friends: it’s the same way you move to San Marino.  You just do it.  Except, they moved back to America after less than a year abroad.  We realize that there’s no going back after a lung transplant.  Once I am post-op, I will enter a whole new world of restrictions, adjustments, changes and opportunities.  I have no doubt that it will challenge me in ways I haven’t even yet considered, but I have courage because I know the people who are supporting my wife, my son, and me will help us “just do it.”

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