Wednesday, October 28, 2015

I Found My Pills on Medicine Hill

     Once I returned home from the hospital, my primary concern was making sure I took my pills at the right time, in the right order, and didn't miss any doses, whether due to simply forgetting, or not having enough pills on hand.  The latter issue was a matter of long term planning, and I knew if I regularized when I refilled my pills, reordering them in a timely manner to ensure I never ran out would be no trouble.  To make sure I didn't just up and forget to take my pills, I set timers on my phone.  Six of them, to be exact-- at six, seven, and nine a.m., and then noon, six, and nine p.m.  These timers are an absolutely crucial part of my daily care, and I can't imagine how I would be able to take my meds at the appointed time without them. 

Monday, October 26, 2015

My Speech at the Vita Redita - University of Michigan Jack Roth Stadium Club, Oct. 24 2015

This is the link to the speech I gave at the Vita Redita gala on Saturday night.  It is a little over 12 minutes long.  Below, I have transcribed what I said during the speech.

     I first want to say what an honor it is to be asked to speak to all of you tonight on behalf of the Transplant Center.  Every time I speak about my transplant experience, it is for a different reason or for a different audience, and as I prepare, I always uncover new things that I'm grateful for.  Fortunately, I've had other opportunities to speak publicly about how grateful I am for my wife, my mom and dad, and my mother-in-law, all of whom have been instrumental in the journey I have been on.  So tonight with you, I can focus on how the transplant center here at the University of Michigan has restored my life.  But before I tell you about those expereinces, I'll give you a glimpse of who I was before the phrase "lung transplant" came into my life.

     Throughout elementary, middle, and high school, I was fortunate that cystic fibrosis had no noticeable detrimental impact on my life.   For those of you who do not know, cystic fibrosis is an illness that is something your born with, it's genetic, and it affects primarily your lungs and your digestive system.  And for a lot of kids, as they grow up, they are hospitalized very frequently with illness that need to be handled in the hospital.  Throughout my childhood, my parents took very good care of me, taught me how-- what it meant to be a good patient, and always do what the doctors told me to do, so that I could take care of myself.
      When I was in 10th grade, knew I wanted to become an English teacher and so I chose to go to Eastern Michigan University- partly because they have a good teaching school, partly because they gave me a full academic scholarship, and partly because of my doctor in Flint was transferring me and my care to the University of Michigan adult CF clinic with Dr. Simon.
     In 2004, at age 21, I experienced my first hospitalization, because of a severe pneumonia in my right lung.  This is when the reality of cystic fibrosis was entered my life, but it did not take center stage.

     Just a month after the hospitalization, I was off supplemental oxygen, my wife and I had our beautiful wedding that we'd been planning for months, and that fall was hired into my dream job, teaching American Literature to 10th graders.
     Over the years, I occasionally dealt with illnesses, and whenever those arose I listened to my doctors, and I worked through things, and knew I was in the best possible hands.  Cystic Fibrosis is a chronic, progressive illness, so although I knew on some level that things were getting worse, I was still living a full life, so it was easy to put aside what the future could potentially hold and focus on the "now."  This was especially true in 2008, when my wife gave birth to our son.
      In February of 2013, I was hospitalized and assumed I'd just bounce back like I always did.  Instead, the phrase "lung transplant" not only entered my radar, it became the brightest blip on my screen.
      Once this happened, Dr. Simon gradually handed my care off to Dr. Tammy Ojo.  This was difficult, because after 15 years, he had become like part of my family.  He doesn't know this yet, but a month from now, I'll be at his house for Thanksgiving.  Don't worry, Dr. Ojo, Christmas is at my place, so we're good.

     I transferred all the trust I had in Dr. Simon to Dr. Ojo, and she and the transplant care team fully informed me regarding what I would need to know and how I would need to prepare both physically and psychologically for this intense surgery. I have a friend who is another success story to come of out the University of Michigan transplant center, and he was there to help me process this new reality all throughout.  But, like any major life event, you can't really know how things will go or how you'll react until it happens.  
After being on medical leave from work, 19 months on supplemental oxygen, and 13 months on the transplant list, I received the call on Aug. 20, 2014. I arrived at the hospital around noon and immediately was put at ease by the excitement people were expressing as they functioned like a well-oiled machine to prep me for the operation.

    The surgery itself took 16 hours, during which Dr. Jules Lin removed both of my lungs and then replaced them with the lungs from my donor.  It doesn't matter how many times I say that, it still has a surreal quality to it.  Perhaps that's because the transplant center does things on a daily basis that were impossible when this stadium was built 88 years ago.

     Like any recovery process, mine had its ups and its downs, but there was one constant: that was the abiding trust that I put into doctors, the nurses, the respiratory therapists, the physical therapists, the pharmacists, the social workers-- everyone who was there to help me recover. If we had a question, or concern, it was answered.  There was never any doubt that we were being taken care of by people who were completely invested in my success and well being.

     Less than three weeks after the surgery, I was able to return home.  My wife went to get the car, and I sat outside the hospital-- and  I realized the last time these lungs took a breath of fresh air, they were inside another human being.  At that moment virtually none of the blood in my body was actually mine-- during the surgery, I'd been given four times the amount of blood in a person's body.
I was quite literally a different person than who I was when I'd arrived at the hospital just 20 days prior.  But one thing that hadn't changed was that I would still be a good patient-- this was the start of a much longer journey, and maintaining my health would continue to be a group effort.
     In the early months, I relied heavily on the transplant care team while at home.  They had done a fabulous job of preparing me for taking all of my new medications, but more importantly they assured me that there was no such thing as a silly question.  In those first days, I spoke to my transplant coordinator Cathy more frequently than my own mother.  Even just a few weeks after the transplant, I was feeling better and breathing better than I had in years.

     This brings me to one of my favorite transplant stories.  Last spring, my nephew had a birthday party, and it was an outdoor party, and my son-- seven years old, was too busy having fun with his cousins to realize that he wasn't holding on tight enough to the string on his helium balloon.  So all of a sudden, a strong breeze comes along, takes the balloon out of his hand, and it starts to float-- I see that as my opportunity.  So I took off running as fast as I could go,  and just before the balloon was taken off into the sky forever, I snatched the string.  Thanks to the University of Michigan Transplant Center, I can literally run like the wind.
     One of my other favorite stories is that when my son was planning his 7th birthday party, he had one question for Dr. Ojo... he came with me to one of my appointments, and he wanted to have an ice skating birthday party and he asked Dr. Ojo, "Can my dad ice skate?"  It's a little bit like that old joke about "Can I play a piano" because I can't ice skate, even before the surgery... but I was certain that she would say no, because I have, you know, metal in my chest, and I'm not supposed to lift more than 30 pounds, and I was just, I, didn't even expect the answer to be 'yes' whatsoever, so I didn't prepare my, my son for anything, I just figured she would tell him 'no' and she could be the bad guy.  And to my surprise she said, "Of course your dad can skate at your seventh, seventh birthday party."  So in fact, I did skate at my son's birthday party, despite my trepidation, and there's some, a lovely video of that, me doing it, but, it was, ah, one of the many things I thought I'd never do, and it's all because of the U of M transplant center.
     This summer, I had one of the best experiences of my entire life, volunteering on Carnival Day at Camp Michitanki.   It all started when I received an e-mail, and the email went out to Gift of Life volunteers and asked if anyone would like to volunteer and perhaps come dressed as a clown.  So I responded to the email politely, and I said, "First of all, nobody likes clowns... and second of all, I dress up as Spider-Man occasionally at school, when it applies to Halloween, or somehow I tie it to the curriculum, or I don't have anything else that's clean in the closet.  But, I did go to Camp Michitanki as Spider-Man.  And, I think it is probably because, yeah, see, see.  I think it's because Peter Parker hasn't gained a single pound since he was created in 1962, and I've gained 40 pounds since last August, that, not a lot of the kids I interacted with, in fact only one kid believed that I am actually Spider-Man, but do you know what that means?  One kid believed that I am actually Spider-Man.  There was something even more special in store for the non-believers.  There isn't an English word to capture the emotion I felt, dressed as a super hero, leaning over to a kid who has experienced something no child should deal with, and seeing the expression on the his or her face when I'd lean over and whisper, "You know, I had a transplant too."
Because of the University of Michigan Transplant center, I was able to return to my career this past fall.  I have eased in by returning to teach part time, and was assigned to the middle school, rather than the high school where I worked for ten years.  Right away it was apparent that teaching kids who are 12 going on 13 is a little different than teaching kids between who are about to get their driver's license.   

      As I prepare to close, I'd like to share an example of that with you.  One of my seventh graders gave me this note.  Like all notes the middle schoolers have given me, there is a large picture of me on it.  I know a lot of you can't see it because that's because I don't want you to... he either gave me a lot more facial hair than I really have, or I just ate a box of Oreos.  I don't know which.  I asked him yesterday if it was okay if I shared some of the letter with you and he gave his approval.  It reads,  "Dear Mr. Green - thanks for making English Language Arts fun.  I like your hospital story.  It was cool."  And Josh is right.  My hospital story is cool.  Cool enough that there should be more stories like it.  And that is ultimately why we are here tonight.
     If someone had asked me five years ago, "what would you give for a second chance at life?" I'm not sure I would have known how to respond.  But now I know the answer.  I would give up two and half years of a career that I am deeply passionate about.  I would give up three months of being able to drive.  I would give up sleeping in on weekends in lieu of waking up to take medicine at 6 and 7 am every day.  I would give up being able to mow the lawn due to potential infectious fungi found in the grass.  If you ask my wife, I gave up that last one a little too willingly.

     I recognize that I stand before you today because in the face of the worst loss imaginable, amidst intense heartache and grief, a family chose to look outward and give.  The University of Michigan Transplant center made certain that  that gift has had an immeasurably positive impact on my life, and the lives of others.  Tonight, we have gathered to answer a slightly different question: "How much would you give to give someone else a second chance at life?"  I know I speak for everyone affiliated with the transplant center and all the Camp Michitanki kids, when I say that we hope your answer is, "More than I anticipated when I left my house."  Thank you.


Friday, October 16, 2015

A Detailed Glimpse

I wrote this to help promote the Vita Redita, a fundraiser held annually by the University of Michigan to raise money for the Transplant Center. It is now sold out!  I am so excited for this opportunity.

What follows is a more detailed account of some of the more memorable moments during my recovery:

Monday, October 12, 2015

Never One to Turn Down Seconds

     Now that I am almost 14 months post-transplant, the calendar doesn't have any "firsts" for me, but "seconds" are just as wonderful on this journey as they are during a fabulous meal.  The first holiday related tradition that I've now done twice is walk around Greenfield Village at the Henry Ford Museum during "Halloween Nights," where the park, typically only open during daylight, allows families to stroll the grounds, get treats, eat cider and donuts, and see semi-spooky things along the way. 

     Last year when I went, I was much more immunosuppressed, quite concerned about the crowds of people giving me an infection, and nervous about inhaling the synthetic fog used to increase the Halloween atmosphere.  While all of those issues still drifted though my mind at some point this year, they were crammed way to the back, and I could focus on enjoying a Star Wars themed evening with my wife and son.

     As you can see in the photo, my bald faced, glasses wearing Wookie isn't nearly as menacing as Boba Fett.  But we probably had equal amounts of fun!

     As I look forward to the upcoming holidays and the traditions they bring, I am eager to pile as many "seconds" onto my plate as possible. 

Wednesday, October 7, 2015

"The Perfect Shot"

     My son led me into his room, telling me to close my eyes.  He then asked for my phone.  I could tell he was up to something, but wasn't at all sure what it could be. This "close your eyes, I want to surprise you with something" bit is a fairly common one in our home, as my son relishes pranks, tricks, and scaring people just as much as he loves setting up a Lego scene and revealing it to my wife and I.  So it was difficult to know what to expect.  My son walked me "in to position" as he said, and when I asked why he wanted my phone, he said it was to take a picture.  As I handed him my phone, he said I could open my eyes.
     I found myself standing between his bunk bed and his rarely used chalkboard easel.  He told me to look down, and on the front of the chalkboard, and from my upside-down perspective I saw what he had written: 

                            My Dad

     He beamed with pride as I looked at him, but only for a moment, because his face quickly changed to a look of intense focus as he held the camera up to get "the perfect shot."

     Moments like this remind me of how lucky I am, but also make me wonder-- would I appreciate little situations like this is not for the transplant?  Would I have been able to recognize how precious this little occurrence is had I not experienced the nadir and subsequent dramatic improvement of my physical health over the past two years?  I like to think I would, but I'm just as content never knowing the answer, as long as I can keep having these moments and recognizing how wonderful each of them are.

Monday, October 5, 2015

Many Happy Returns

    After such a strong run of blogging, usually five days a week, the reality of teaching-- albeit part time-- while trying to write a book / blog hit last week: no updates at all. But, as I dive into the curriculum of 7th grade English Language Arts, I am going to recommit myself to this blog, especially writing the remaining segments of what will be the book I hope to publish for people whose lives have been impacted by Cystic Fibrosis.