One Year Blog-iversary

     When someone told me the night of April 29th, 2015, that I should write a book about my life, the logical step to take was to just start writing.  But, my wife encouraged me to do it through a blog, because a) it would be refined enough to be in (or close to) "publication form," and 2) writing for an audience right away, rather than just in the long term, would provide motivation to keep going.  Now, it is just over a year later (the blog-iversary was on April 30th) and I have written more in this past year than in any other in my life.  I posted 126 entries, which means I wrote and published something on just over one-third of the days in the past year.  And, over these past 366 days, my writing has been read over 10,700 times. 

     My wife, as she always is, was correct-- telling my story though a blog was the best way to approach writing a book.  I have only about seven or eight "parts' of my life yet to write about, some more lengthy than others, before I can send my work to a few select people who have agreed to help me with the editing and proofreading process.  That will be a major step toward this blog becoming a book, but as one of my mentors stressed, "It isn't about writing, it's about re-writing."  I accept that I'm further away from being ready to contact publishers (I have a lead or two but if you know of anyone, let me know!) than I'd like to believe. 

     In the meantime, below is a post that contains links to the video of my speech from just over one year ago, as well as a link to the transcript of that speech. 

     I want to thank those of you who read this, whether you know me personally, whether you live half a world away and only know me through this blog, or both-- my former student in Germany is, I think, the only person in that category.  Your readership has been a huge motivating factor that has kept me coming back to the keyboard much more often than I otherwise would have.  You will definitely get special mention in my book.  Not individually, of course, though if you all want to send me your names I can make an appendix or something. ;)  And if this is your first time reading my posts, welcome aboard!  Most people who "follow" me do so through the open group page on Facebook called "Student, Teacher, Husband, Father: Evin's CF Journey."  Maybe I should think about shortening that group name.  ;)

~~ Alright, enough of all that... a previous blog entry with the aforementioned links are below!

     I am very happy to share the video of my speech at the CF Family Education Night.  U of M created a social work focused website with a Cystic Fibrosis subsection, and they have linked the video there.  By going to this link and clicking Part 2, you can see my entire speech, including the question and answer session which followed.  As far as I can tell, the speech will play on mobile devices as well as regular operating systems.  If you already read the speech when I posted it, you will see that I pretty much stuck to the script, with a few notable exceptions.  I am so grateful for having had the chance to speak at this even and for all of the great questions people asked after I spoke.  I also can't thank Dr. Simon enough.  He was my pulmonologist for 14 years prior to my transplant and gave me a better introduction than I could have asked for.  Feel free to let me know your thoughts or ask any additional questions in the comments section, or by contacting me through Gmail.  

... It's Who You Know.

In my speech at the CF Family Retreat, I also mentioned the book I wrote for the "Young Authors" assignment in 4th grade, titled A Day at CF Camp. I'm so glad my ten-year-old self chose to record these details-- I had completely forgotten about some of them. I think it is noteworthy that I included so many specifics about camp, but don't explain what Cystic Fibrosis is whatsoever.  The full text and a few photos of my most excellent illustrations follow.

This book is dedicated to all my friends at camp. 

Every day at CF camp is very tiring. 

You get up, get dressed, brush your teeth, wash your face, and go outside. 

Then one of the cooks rings the bell for breakfast. 

After that you can do lots of things: go for a run, play frisbee, four square, dodge ball, or volley ball. 

Next you eat lunch, but before that you wash up. 

After lunch you rest in your bunk until the counselors let you out. 

In the afternoon you pair off with your counselor and you can play human knot, memory ball, long jump, boccie ball, or go swimming. 

The cooks ring the dinner bell, and then you eat dinner. 

After that you get a treatment for a half hour. 

Before camp you set back your watch one hour so you go to bed ten o' clock camp time. 

On two special nights you go to bed later. On the third night we have a dance and on the last night we have a bonfire. 

It's Not What You Know...

In my speech at the CF Family Retreat, I referenced the book I wrote in second grade, I'm Short and Have CF.  It provides an excellent glimpse into the perspectives of 8-year-old Evin. The entire text of the story appears below, along with a few photos of some of the more precious illustrations. 

Short is not fun. Sometimes I get in people's way. I'm the shortest one in my class, and probably the whole school too!

But I can run fast!  It makes me feel good that I can run fast. 

It's not my fault that I'm short. I was born that way. 

My lungs collapsed and I have Cystic Fibrosis, that's why I'm short. 

Every six months I have to go to Detroit to have a check up. I have to take enzymes to grind up my food. 

Every night I have a treatment. I sit on my mom or dad. They cup their hands and hit me gently. 

Except for having CF, I'm okay. Even though I'm short, I do have friends and that makes me feel good!

The End. 

... The More They Stay the Same.

     I wrote the following in December of 2014, and it was previously published in the April 2015 edition of the University of Michigan CF Newsletter.  I referenced this essay in the speech I gave last Wednesday when I mentioned having already written about the "the rest of the story" regarding my transplant and recovery experience.  If you are looking for extensive details about the transplant experience, this is it.    

     I am so thankful that U of M has given me an opportunity to share my story with so many people, and that they have permitted me to write however much I need to get the story told.  They even allow for my long and quirky titles!  Such as...

Doctors, Stranger, Lungs, or:
 How I Learned to Stop Worrying and Love my Transplant

By Evin Green

            For those of you who vividly remember my previous contribution to this newsletter, this may be all you need to know: We “just did it.”  In late August we moved to San Marino, which is paradise.  We haven’t looked back since. 

Now, for the rest of you, I won’t belabor that analogy any further.  Instead I will tell you all about my experience of having a bilateral lung transplant and the recovery which has followed over the past four months. 

On the day the call came, Wednesday, August 20, we had planned to use one of our last days of summer vacation to go to Greenfield Village.  But my just-turned-six year old son said he’d rather stay home, and since my wife is a teacher, we could be flexible and pick a day later that week or the next to go before school resumed.  So, instead of being on a train when we got the call, I was sitting on my couch.  The details of the call are now a blur, but since we live so close to the hospital, we had a leisurely two hours before we needed to leave.  Even though we already had all the bags packed and plans in place, that time still felt harried, no doubt because of the surge of emotions we were all feeling.  Someone I didn’t know and would never meet had died.  And this stranger was donating his or her organs, giving this incredible gift to me.  The wait was over and it was really happening.

Except maybe it wasn’t.  This call wasn’t a guarantee that I would have a lung transplant in the coming hours.  The lungs needed to arrive at the hospital and be evaluated on site, so during the entire process, we were all keenly aware of the possibility of a “dry run,” which the doctors had prepared me for during conversations about what to expect once I got the call.  The family members who planned to wait at the hospital all live at least two hours away, so they were driving to Ann Arbor as my wife Kayla and I said goodbye to my son and stepped out the door.  It was very strange saying goodbye to Henry, who had been hearing for over a year about how “daddy was going to get new lungs.”  He had a pretty solid grasp of what that meant, if you ignore the fact that he once declared that Dr. Simon was going to Argentina to get the lungs.  However, the true gravity of the situation eluded him.  I hugged and kissed him and pushed away any thoughts that it could be the last time I ever did so.  No negativity allowed on this journey.

The preparation for the surgery was long and tedious, and the worst part of it was, as my friend who is now three years post-transplant told me it would be, having the catheter placed in my neck.  I’ve had plenty of IVs and other lines placed in me during hospital visits to deal with issues stemming from Cystic Fibrosis, but this was new.  And unpleasant.  But once it was in, the rest was just waiting.  So much waiting.  I was so relieved when it was finally time to take me back into the operating room, despite the fact that it meant saying more goodbyes to my wife, her sister, and my parents.  From this point on, I had the easy job—stay unconscious and alive.  They bore the burden of more waiting, more wondering, and more worrying.

In the operating room, they played Dave Matthews Band at my request, and informed me that it was still possible that I would not have a transplant that day.  In fact, they might put me under, determine the lungs were not ideal for transplantation, and wake me up with my old lungs.  This became my primary fear—that all of this would be for nothing and I’d go back to being at home on six liters of oxygen waiting for this process to happen all over again.  About a half an hour after I was wheeled into the room, a phone rang and one of the many doctors there answered it.  I could not make out what was said, so once the call ended I asked, “What was that, a wrong number?”  Humor was my defense against my fears at that point, and it was working well enough.  The anesthesiologist spoke with me and said they’d be putting me under in the next few minutes.  My last memories in the operating room were of a warm, dark, swirling sensation, like slowly going down a drain, and a comforting feeling of immense love.  Whatever was on the other side of this surgery, I was ready for it.

As I said before, after this point, I had the easy job for what turned out to be the next 36 hours.  Sixteen of those were the actual surgery, which took longer than most since my own lungs were so scarred and needed to be cut out very slowly, centimeter by centimeter.  Dr. Jules Lin did the entire procedure, including the “second surgery” which was required because I began bleeding internally after the donor lungs were successfully placed.  Thirty units of blood later, the bleeding had been stopped and I was in the recovery room.  My loved ones watched and waited for me to awaken, which I did not do until Saturday morning.  My wife said that she wanted more than anything for me to be extubated and start breathing on my own because she needed to hear my voice—that would reassure her that I was really and truly “back.”

When I did regain consciousness, a respiratory therapist named Jason was there, and he promptly told me I needed to breathe into an incentive spirometer ten times every hour.  If I had realized that he is almost seven feet tall, I might not have responded by saing, “You’re a jerk.”  It turned out he wasn’t, though.  He was among the best in a long line of fantastic caregivers who got me through those first few days of my recovery.  I could write an entire article about the individuals who went above and beyond the call of duty to make my experience in the ICU, and later the stepdown unit, easier and brighter.  The progress I made in the first few days, including getting out of bed and sitting in a chair on the same day I regained consciousness, was very encouraging.  I was on four liters of oxygen, but that was already an improvement from my pre-op state. 

Every transplant recovery has its complications.  Mine involved a night where my oxygen need tripled, my vivid (though not frightening) hallucinations (a side effect from the medicine) kept me awake every time I closed my eyes, and, we would later discover, my epidural had fallen out and stopped working, so the pain, which had been well managed prior to that, really hit me.  I was understandably worried about what was happening to me, and felt like I was not in control of anything.  Thankfully, the morning brought some answers and the RT whom I had previously called a jerk had a theory about why I was all of a sudden not breathing as well as I had been.  My family’s worst fear was that my body was rejecting the lungs, but his first thought was the issue was as much psychological as physical.  And he was on to something.  The doctors determined that I was dealing with “perfusion edema,” which is a fancy way of saying my lungs were angry about the transplantation process and they just needed to keep an eye on the fluid draining from my lungs.  To help the fluid drain faster, I had to learn to stop worrying and, as the Faith Hill lyric goes, “just breathe.” Retraining myself to inhale and exhale in a way that was befitting these new healthy lungs and discontinue the compensatory techniques my body had learned to use due to my old, failing lungs, was crucial, difficult, and only possible because of the encouragement of the nurses, doctors, therapists, and, of course, my family.

After that day, the remainder of my recovery in the hospital went pretty smoothly.  I continued to be flooded with support through Facebook and excitedly updated everyone about each little moment of progress.  Right after I was transferred to the main floor, I graduated to breathing room air.  After over a year of needing supplemental oxygen, two weeks with these new lungs put an end to that.  My son was able to visit me, which felt like a national holiday.  As I continued to improve and was nearing a departure date, the doctors prepared me for the biggest adjustment I would face at home: being responsible for taking all of my medicine at the right times and in the right dosages.  The transplant coordinator Cathy also assured me that I could call with any question or concern, and that there was no such thing as a silly reason to call her.  These final pieces came together, and three weeks after the surgery, I stepped outside for the first time, in the warm bright sunshine breathing the fresh air (through a surgical mask, of course).

            Having now been home for almost three months, my life has done a 180 degree turn when compared to my pre-transplant life.  Almost every part of my day is better and different than it was with my old lungs.  Under the care of the amazing Dr. Tammy Ojo, I no longer do any nebulizer treatments, I’ve gained almost 30 lbs. and my lung function is currently only a few percentage points below that of the average male my height and weight.  While a return to teaching is still a ways off, I am relishing my ability to do work around the house and run errands to make our family run as smoothly as possible.  I never thought there’d be a day when I appreciated the fact that I can sweep the whole upstairs without getting tangled in an oxygen cord or getting short of breath, but by golly, that day has come. 

Perhaps best of all, in November I was invited to speak to the very same students I taught on my last day prior to needing to go on medical leave, because they chose to honor me by organizing a fundraiser for Gift of Life Michigan.  Standing in front of them, telling them the story you just read, and further igniting their passion for helping to raise money for the cause of organ donation has been a highlight of my post-transplant experience.  After the speech, one of the students asked my about my donor and if I had any contact with the family.  I told them that six months was the timeframe the doctors put in place for that to happen, but I was looking forward to that day, because I am continuing the crusade I started when I went on the lung transplant list.  It is a crusade of gratitude, a mission to tell everyone, even those who I think are already aware of it, how grateful I am for their impact in my life—a new life that I would not have if not for my doctors, a stranger, and these wonderful, beautiful lungs.

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 9^th 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.”