Showing posts with label University of Michigan. Show all posts
Showing posts with label University of Michigan. Show all posts

Tuesday, January 19, 2016

Liveblog of a Non-Routine Visit to the Doctor

     The sinus infection I've had since November didn't respond fully to the two different types of antibiotics my doctors prescribed, and as of Saturday, it was clear that this infection has found its way into my lungs (specifically, just my right lung).  I called the Transplant Coordinator yesterday and told her that my symptoms included a sharp pain in my lower right rib cage area, and raspy breathing sounds.  She scheduled me for the first available appointment, which was this morning.  I share now with you a liveblog of the 2 hour and 14 minute experience.

8:00 am: My Driveway

I am leaving for the appointment and giving myself ample time to arrive. I am so grateful I live only 20 minutes away from my doctors at a hospital that is so highly regarded.  A pink and blue cloud spans the my entire field of vision after my second left turn.  At least the drive there will be pretty.


8:22: Stoplight within the Medical Complex

After turning onto the road which encircled the University of Michigan medical complex, I stop at the red light, prepared to go straight onward as I do each time I come here.  I take a moment to look closely at the signs, realizing that many people turn right toward the Cancer Center and various other medical specialty offices.  They never go through this light.  After coming here for one overarching medical issue for 16 years, I've taken for granted all of the other amazing work done by incredible doctors in other areas.  The light turns green.


8:29: Parking Garage

My radio always frizzes out as soon as I drive into the parking garage, but at least my window wasn't so frozen that I had to open my door to get my ticket.  I'm grateful to get a parking spot very close to the entrance as I put my winter hat on to stave off the bitter morning air.


8:35: X-Ray Dressing Room

As I prepare for my chest X-ray, I contemplate the necessity of the final line on this sign.




8:43: Exiting X-Ray Reception, Walking toward PFT Lab on Floor 3

I always take the stairs as much as possible to put these healthy new lungs to good use, particularly on days like this when I feel not-so-great, as a way to gauge "how I'm doing."  Today, after I get to the third floor, my right lung is telling me, "It's good you've come to the doctor."


8:47: Standing Confusedly Between Reception D and Reception C

I momentarily forget which reception area I am supposed to go to.  I could blame the recent renovations, but that's the First Child in me who has to either be right or have a good reason not to be right talking.

8:53:  Reception C Waiting Room

I've filled out this paperwork so, so many times.  Why write something pedestrian when you can write something fun?

Reason for Visit:



9:05:  Inside the PFT "Box"

Results of PFT were as I expected-- a marked dip from last time.  I don't even ask what the numbers were.  Not relevant. I see on the tech's screen that the point at which I inhale and feel a sharp pain during each of the four pulmonary function tests is quite visible as a spike marking a decrease in how much air I'm taking in.  I'm in a "box" (a glass room with a door) because they have all the CF patients do their PFTs in there now, and then thoroughly scrub it down after each test as part of the new anti-infection protocol. 


9:08:  Exam Room
Make myself cough so I can provide a sputum culture.  As I put the lid on the plastic cup and seal it into the bag, I realize I can't remember the last time I did this-- certainly when I had my old lungs, so at least a 17 months ago.


9:11: Technician Leaves Exam Room
My blood pressure is nearly perfect, as usual, and I don't have a fever. I haven't had one during any of this ongoing sinus infection business, so that's a plus.  Isn't it?  I don't know.  In my book, fever = bad. 


9:18: Doctor, Nurse, & Social Worker Enter Exam Room

My medical team is like a small family-- teasing each other about shoe and jewelry choices, asking me which movies I've seen recently (Ex Machina-- definitely worth your time and money) and overall just making me relaxed about the fact that yes, my lung function is down, yes, we need some better answers about what is going on in my lung, and yes, that means I need to have a bronchoscopy done ASAP. 


9:33: Nurse Remains in Exam Room to Schedule Appointments

After listening to my breathing and confirming that the pain I'm feeling is from either inflammation or fluid, the next step has to be going inside the lung with a camera and taking a few tiny snips of it to get a full picture of what to do next-- likely IV antibiotics that I would take three times a day for three weeks.  But that remains to be seen.  My transplant coordination nurse is on the phone making all the necessary appointments, and also schedules a CT scan for me, prior to the bronch.  This is because I told the doctors that my sense of smell is G-O-N-E.  I also have trouble tasting food.  My family couldn't believe that I couldn't tell the difference between a chocolate jelly bean and one designed to taste like dog food.  An appointment with an ENT who specializes in CF is scheduled for sometime next month.  Maybe he or she can help restore 2/5 of my senses!


9:54:  Blood Draw Lab Waiting Area

The lab is packed.  This is a good time to text my wife a few updates about what is going on.  She will need to take tomorrow off in order to take me to the bronch, since I can't drive at all the rest of the day.


10:10:  Blood Draw Lab

I have had my blood drawn several hundred times in my life.  I still never look, and apparently my non-verbal communication is frequently alarming, as I am almost always asked "Are you alright?" by the person drawing my blood. I am alright, but somehow I've failed to get accustomed to needles and blood despite years of experience.  Maybe I should just start watching the whole procedure instead of staring off in the opposite direction.


10:14:  Parking Garage

I'm grateful yet again for living so close to my doctors-- because I'll be coming back here less than 24 hours.  I hope to leave with answers to two things:  a) What is the best course of action to get my lungs back on track? And 2)  Has anyone ever really reused a nipple marker?

I bet if I ask the second one while under sedation, the question won't seem that out of the ordinary.

Wednesday, December 9, 2015

New, Cool, and Never Before...


Yesterday I received an e-mail letting me know that the University of Michigan Transplant Events Center had added a page devoted to my transplant journey.  I am remarkably honored to have, for the first time, a web page that features my name in it!  (I'm not counting the one I had to make for a class in college, which was just a loose collections of Simpsons references and a link to Eastern Michigan University's newspaper, The Echo.)

Friday, December 4, 2015

YouTube featuring MeTube


     In case you are one of the 3,000 plus people who didn't already watch this video via my wife's footage of it, or the official version which the University of Michigan Transplant Center posted, OR you are one of the handful of people who wants to watch the video again because you can't get enough of me, the Transplant Center has posted the official video to their YouTube channel.  In the margin to the right, you should see a link to a video featuring Kyle Clark, who received a pair of "reconditioned" lungs using the cutting edge XVIVO technology.  He and I will meet for the first time when we team up as Batman and Spider-Man this summer to thrill the Camp Michitanki kids.  I am hoping we've both rehabilitated our upper bodies enough by then to bench press each other, or at least have an arm wrestling contest for the ages!

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:

Thursday, August 27, 2015

A Good Kind of Overwhelmed...

     Yesterday I received an email from the Events Specialist for the University of Michigan Transplant Center.  She had previously asked me to be the guest speaker at the upcoming Vita Redita, a black tie event to raise funds for the transplant center.  She had also asked to share my transplant anniversary Facebook post to the transplant center's official Facebook page.  Here is what her email said:

Wednesday, July 8, 2015

Video of my Speech at CF Family Education Night 2015

     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.  

Tuesday, July 7, 2015

Medical Trials Without the Tribulations

     I have been fortunate enough to qualify for a variety of Cystic Fibrosis medical studies over the years.  All of them were done through the University of Michigan, and though not all of them went smoothly, they were a fascinating window into how new medicine is approved and the level of commitment that is needed to make strides in finding new and better ways to treat CF.

Tuesday, May 19, 2015

Walt Disney Whirled

     With my family's fifth Disney trip just under a month away, we've been talking a lot about how excited we are to go, since every trip prior has been great, and the upcoming one promises to top them all, considering my improved health and the ever increasing excitement displayed by my son, who, now that he has seen the original film, will go bonkers over the Star Wars attractions, in addition to all of the things he loved last year.  (That was one long, run-on sentence, and I'm not changing it because Disney excitement is the second leading cause of run-ons after "being in 9th grade.")

Thursday, May 14, 2015

Bronch Me, Amadeus

     I am having my seventh bronchoscopy today.  I've had a few more than is typical in the first nine months post-transplant, but I have had a persistent bacteria that has been hanging around in my right lung (coincidentally, the same side of my body that suffered the severe pneumonia in 2004).  It hasn't stopped me from attaining a PFT that is considered "normal adult" but, you know, lingering infections are bad on principal.  So, now I have become an old pro when it comes to having a bronchoscopy.  Soon after I have the IV placed in my arm and answer a bunch of questions (no, I haven't eaten since midnight, thanks for reminding me), I'm wheeled back into an operating room.

Saturday, May 2, 2015

... 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.

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.”




Thursday, April 30, 2015

So It Begins...

Last night, I spoke at the Cystic Fibrosis Care Center Retreat in Ann Arbor, Michigan.  I was extremely honored to be asked to contribute to such an important event.  The response I received from the people in the audience during and after the question and answer session following my speech was unlike anything I could have imagined.  This experience has signaled to me that I need to do more to share my story and do whatever I can to help people with Cystic Fibrosis and their families.  That begins now.  Here is the full text of the speech I gave.  A link to a video of me giving the speech should be available in the coming days and will be posted here as soon as possible.


           Student, Teacher, Husband, Father: My CF Journey
                                           by Evin Green

When I was told that during this 30-minute speech, Donna and Dr. Simon would essentially like me to tell you my life story, I realized I would have to make certain that I included the most interesting thing about my life thus far.  The hard part would be determining what that is.  Is it the fact that when I got my first job as a high school English teacher, I was only two years older than some of the seniors in one of my classes?  Is it the anecdote about how my wife and I actually met in Preschool, and before falling in love during our first year of college, we dated each other’s best friend in high school?  Or could it be my reign as Pumpkin Prince, when for two years in a row I grew (along with the help of my Grandpa Mooney) the largest pumpkin in Tuscola County?  But then, I realized all of those tidbits ignore one key thing:  you, the audience.  This is not the first time I’ve spoken publicly about my life with Cystic Fibrosis, but it is the first time I’ve ever spoken to a group that is so knowledgeable about the disease.  Virtually everyone in this room knows what it’s like to make sure you have enough Pulmozyme and a large enough cooler before leaving on a week-long vacation.  You have all asked the question, “Did you take your enzymes?”  Each of you has listened to someone you love coughing in another room and wished that you could somehow spare them from needing pills, inhalers, or IVs to remain healthy.  So when I considered why I was asked to speak here tonight and what the most interesting thing about my life is to you, it’s this:  that you have every reason to believe that your daughter, or your husband, your wife, or your son, will have a life that’s just as ordinary, just as remarkable, and just as ripe with opportunity as mine has been.

My CF journey began partly because of television.  I was the first born in my family, and when a public service announcement declared it was Kiss Your Baby Week in the early months of 1983, my mom, along with thousands of other new mothers, did just that.  Since she and my dad disagreed on just how salty their 3 month old tasted, a few more relatives were brought into the fold, and the consensus was, yes, something was amiss.  Not long after, my parents took me to the doctor because of a respiratory infection, and I was later admitted to the hospital, where my mom told the doctors about my savory forehead flavor.  When the test came back suggesting I did have CF, I was transferred to Detroit Children’s hospital.  After about seven days there, I was discharged with a formal diagnosis of Cystic Fibrosis, and once home, my mom and dad began all of the requisite treatments:  Pre-digested formula and eventually enzymes in the applesauce, along with percussive and postural drainage four times a day; basically everything that was available in 1983. 

I have never known an existence without CF, but I have very few memories of the illness impacting my life in my elementary school days, apart from going to the office to take my enzymes before lunch every day.  I also do not recall when I began doing inhaled medicines, but I was around 11 years old when Pulmozyme was approved and the hum of a nebulizer graced my home at least once each day from that point forward.  I think the fact that I have so few memories about having CF as a child it is a testament to how my parents normalized the realities of being a kid with chronic illness.  Having CF wasn’t a secret, or something that made me brave, it just “was.” 

The earliest example of have of how I processed being a kid with CF is in the form of a book I wrote for a class assignment in 2nd grade called “I’m short and have CF.” Both of which are still true, as you can see.  It is filled with what I now recognize as misinformation about the disease.  My lung collapsed when I was born, and at age eight, I believed that was why I had Cystic Fibrosis.  I also focused on my height, which I completely blamed on CF, not realizing it was in fact my genes that made me short, just not the mutation on my delta F508. 

Two years later the book I wrote for school focused on CF Camp.  Some of you out there might be familiar with Onkoi Benek… * do Beaver Gesture * Where are my beavers at?  Though we are now far more aware of the risks of CFers eating, playing, and bunking together, the importance of having a social bond with adults and kids who knew exactly what my life was really like cannot be understated.  CF was something I was always willing to talk about and explain to my friends, but nothing could compare to people who inherently understood that “my parents pound on me every night” was not a reason to call Child Protective Services.  And that idea of a familiar bond is why we are here tonight, and why we are so lucky to have social media and other forums that allow us to be part of a community without having to be in the same room.  I still have letters I received from fellow campers and staffers, and they remind me of how these relationships gave me a “you are not alone” confidence, the value of which is immeasurable.  One of the staff members, James L. Myer, a priest and lawyer who some of you may know due to his deep connections within the local CF community, became a mentor to me and would eventually be a part of my most important life events.

Another reason that my childhood memories of CF related situations are sparse is that I was not hospitalized again until after high school.   Missing school for a check-up once every three months is one thing, but not facing a missed week of school or a stressful course of IV treatments in those formative years delayed for me a realization that everyone has, and most CFers probably have because of their illness:  life is not fair.  It is such a trite phrase, but I’d imagine we all have a story that encapsulates when this truism crystallized for us.  Mine was in my senior year, when I tried out for the Varsity baseball team.  I had been playing baseball with my younger brothers in the back yard since they were old enough to swing a bat, and had been involved in organized baseball through the Caro Baseball Federation since I was six years old.  I had always looked forward to playing in high school, since I knew my solid second base skills and single up the middle hitting abilities meant it would be highest level I would ever play at.  After two years on JV, Varsity tryouts came as the snow began to melt in 2000.  I went and had a physical done at a local doctor, and was eager to advance to the next level along with my fellow JV teammates from the previous year.  When the coach started the fist tryout by having us run lap after lap around the gym, I didn’t think much of it, but knew keeping up with everyone wasn’t possible.  I ran at my own pace, coughed quite a few times while I ran, coughed even more when I was done, and was quite exhausted when it was time to move on to fielding drills.  At the end of tryouts, we ran a series of sprints, and that went about as well as you would expect.  When I showed up the next day for the second part of tryouts, the head coach took me aside and said he couldn’t allow me to continue to participate.  My illness, which he admitted he knew very little about, was too big of a risk.  I told him that I had a physical on file, and I wanted to point out that I could easily handle running down to first base and waiting there during the next at bat, and the furthest I’d ever have to run in a game would be from the outfield back to the dugout, but decided there’d be no way to convince this sixty year old Army vet that I was anything more than an equipment manager, which is the job he offered me before telling me to get my gear and call for a ride home.  I clearly remember telling my dad the story though tears in the car as we left.  That was the day that I lost competitive baseball, and the first time I felt like Cystic Fibrosis had robbed me of something.

Now, life may not be fair, but it is interesting.  Instead of playing baseball that year, I landed a small role in the school play, something I’d never really been interested in before.  As I would later go on to minor in Communication & Theater Arts, teach Drama and Speech, and run an Improv Club at Canton High School, I think it’s safe to say that I’m happy with how things turned out.  I also recognize that my “Life’s Not Fair because of CF” realization was a pebble compared to the rockslides that many young CFers face.  For so long I had it so easy and didn’t fully realize it.  The biggest CF challenge of my entire childhood was when I was diagnosed as diabetic right before Halloween of my sophomore year.  It added a new daily pill, and eventually insulin shots multiple times a day.  Statistically, about a third of CFers will have to deal with this aspect of the disease, but hearing statistics certainly didn’t make me more accepting of this change.  I initially fought hard against having to stick myself with needles every day, but eventually realized that instead of saying,  [exhale / tone]“One more thing” I should lighten my tone and add “Just” to the front of that sentence.  That approach continued to be the way I dealt with all aspects of CF from that point forward.

Even though I didn’t use this term then, because, to be honest, I just made it up for this speech, around that time I adopted a philosophy of proleptic hedonism. Rather than simply living for the moment, consciously or unconsciously, all of my decisions were predicated on doing whatever it took to ensure my future happiness. I first learned of a CF related life-expectancy statistic when I was in high school preparing for a speech about the digestive aspects of the disease.  The Internet was this new thing the school had recently gotten, and I got an eyeful about many aspects of CF, including complications with regards to reproduction.  A teenage kid staring at a computer screen in a school library, feeling waves of confusion and frustration.  This is the sort of thing that should only happen when a student is trying to write an analytic essay on Macbeth, not gaining insight on defining factors of one’s life.  I couldn’t help but wonder, “Why didn’t anybody tell me this stuff?  Well, because I didn’t know to ask the questions. 

            But now I knew the answers, and while the circumstances were less than ideal, that day was the genesis for a basic tenant in how I approach life—“What can I do right now to make sure I’m happy with how everything turns out?” Despite the statistics I saw on the screen that day, I didn’t view my own mortality as being defined by CF. I began operating under the perhaps dark assumption that anyone, at any time could get hit by a bus, or a falling tree, or a bus swerving to avoid a falling tree.  And like anyone, I didn’t want to have any regrets or feel like I wasted any time in reaching my goals.  I was aided by the fact that, having started school age four, I was the youngest among my school’s graduating class.  In tenth grade, I had decided that I wanted to teach high school English, so when it came time to apply for college, I sent all of my information to several universities with good teaching programs, and was offered three full academic scholarships.  I chose Eastern Michigan University for two primary reasons:  it had the most diverse student population, and it was very close to the University of Michigan, the hospital to which my doctor at the time, Debbie Todor, was going to refer me.  As a 17 year old, I had no clue I was making a decision that would pay dividends right up until this very day. 

Starting college was not without its complications, and the one I was most worried about was making my blindly assigned roommate comfortable with the idea of living with a guy who coughed a lot and took a bunch of medicine.  I had no doubt I could manage my care on my own:  Eastern’s fabulous on-campus pharmacy and over a decade of being responsible for doing my medicine under the watchful eye of my parents were on my side—but a one in a million coincidence revealed itself when I called my would-be roommate Chris for the first time.  He sounded nice enough, and after some basic chit-chat, I told him I had Cystic Fibrosis and asked if he’d ever head of it.  He had.  His younger sister had it and she’d passed away a few years earlier.  I don’t know what I said after hearing that.  Probably all of the wrong things, because I was completely flabbergasted.  Ultimately, Chris and I never became close, and I always wondered if it was because I represented a life that his sister never got to have, or if it was simply due to the fact that he and I viewed college very differently.  At that point, my girlfriend Kayla, who is now my wife, was at Michigan State, and my primary concerns were spending time with her and doing well in my classes. After that first year of college, I proposed to Kayla.  We recognized that both of us being 18 made the situation a little atypical, but we planned for a three-year engagement, which made her parents and mine more comfortable with the whole thing.  After all, knowing each other for 14 years only accounts for so much.  Looking back, we both agree that it’s quite likely that our haste to be a permanent couple was influenced by me having CF. But at the time, we just knew we were in love and wanted to be married- it was that simple.  She joined me at Eastern that fall because, as luck would have it, she also wanted to be a teacher, and Eastern would allow us to be together while still pursuing our educational goals.

Proleptic hedonism drove me to finish Eastern’s four-year teaching degree within three calendar years, which was possible because I began taking as many Spring and Summer courses as I could.  This is how I came to be employed at Ypsilanti High School in the fall of 2003 as a 20 year old, teaching one class of seniors who saw me as a barely older brother.  After three months of teaching English classes while the usual teacher was on an extended maternity leave, Ypsi High saw fit to keep me on to help write a grant proposal for a major project they had their sights set on.  So, while I added experience to my resume and earned a steady income, I could also focus the wedding, which in March of 2004, was a little over two months away.  I distinctly recall walking to the Michigan Student Union to meet with our former classmate and prospective wedding ceremony piano player when I stopped to cough.  Blood.  21 years, and this was a first.  I was pretty terrified, but also wanted to press on.  We had so much to prepare for, and I had no time to be sick.  Having never been hospitalized prior to this, I was ignoring a lot of signs that I needed to take care of myself instead of the wedding plans.  I was also ignorant, because I had never been seriously ill—I genuinely thought the pain in my torso was from the stress of coughing, so I would put icy hot patches on my chest and back.  It didn’t dawn on me that there was literally something deeper going on.

I went to the ER at U of M once Kayla and I realized this was much more serious than we’d hoped.  In addition to me being new at this, Kayla was seeing me deal with a significant CF exacerbation for the first time.  I was admitted to the hospital but only spent one day on 6C before I was placed in the ICU on bipap.  The pneumonia in my right lung was severe.  As you can imagine, my family was extremely worried, but we were very lucky to know someone who had seen situations like this more times than some pulmonologists have—James L. Myer, or Jimeyer, as he is commonly known.  While I was on bipap, my wife remembers Jimeyer coming to see me to perform the anointing of the sick sacrament, and basically saying, “What’s all the fuss, this kid is fine.”  With our wedding less than a month away, the comfort he provided was invaluable.  11 years ago this week, after a total of 13 days in the hospital, I told the discharge nurse that I would never see her again, because this “me getting hospitalized” business was just a one time thing.  This kind of attitude kept us from worrying, but was also a defense mechanism I used to avoid acknowledging that I nearly lost my wedding day to Cystic Fibrosis.

I returned home on oxygen, but was soon weaned from that and was able to return to work.  Things settled back down just in time for the wedding, and though my tux was a little oversized as a result of typical in-patient weight loss, on May 22nd, 2004, there was otherwise no sign of the fact that just a few weeks before I had been given Last Rights by Jimeyer, who married Kayla and I that day.  In a way I am very grateful that I got so ill prior to the wedding, because I don’t think a person marrying someone with Cystic Fibrosis typically does so without fully confronting the realities of the disease, and had I not gotten so sick, that could have easily been the case.  When Kayla said, “In sickness and in health…” that day, she, for the most part, fully understood what that entailed.  We didn’t know exactly the hows or whats or whens, but we understood a mutual commitment to making our lives wonderful regardless of what health issues came my way would be crucial to a successful marriage.

Being hired at Canton High School three months after our wedding was a dream come true.  Most teachers would do anything to step into a position like the one I did, and for me it was especially poetic that I was a tenth grader in high school when I decided I wanted to teach English, and now my job was primarily teaching American Literature to sophomores.  I was told I was the youngest teacher anyone could remember the district hiring, but at least now I had five years on the 16 year olds sitting in the rows in front of me.  I carved my niche as the teacher who educates with humor and passion, one who is just as likely to dress up in a costume as he is to lead a serious discussion about racial equity.  I strove to make sure that my health issues did not define me, but I did address them with each class at the start of the year.  I told them first about being diabetic, and explained that if I was lying on the floor when they walked in one day, that was not me creating an elaborate and engaging lesson- that was me desperately needing sugar.  Of course, this never happened, but I found it helpful to humorously describe the most dramatic situation possible to simultaneously portray the seriousness of the issue without freaking the kids out.  I would then tell them about Cystic Fibrosis, which many kids had heard of thanks to biology class.  When it came to explaining CF, my main goal was students understanding that although I may sound like someone who has the flu and needs to go home, my coughing was normal and they weren’t at any risk of catching something from me.  I described my lungs as “the party house”--  that home in the neighborhood where the parents don’t pay much attention and stuff happens there that really shouldn’t be happening in a place where kids are.  Based on the knowing glances I received, it was an effective metaphor.  With those two issues covered, I could go about the business of teaching, and that’s what I did for nine and a half years.

At the start of my fourth year, I was, for the first time, both a teacher and a father.  My son was born in August of 2008, and it was at that time that my life took on new meaning.  Particularly because, as is typical with people with Cystic Fibrosis, having our son took considerably more planning and effort than did the conception of my wife and some of the other happy accidents in this room.  I had been aware of my desire to be a dad for a long time, but after learning about the issues CFers face with reproduction, I had long ago accepted that my students may have to be my surrogate children, and I told myself I could live with that.  But, having Henry six years ago made me see that even more than being a teacher, being a father to him is the reason I live and breathe each day. 

As he got older, I got sicker.  Such is the nature of chronic illness, and despite phenomenal care from Dr. Simon, my exacerbations were more frequent and I was less able to bounce back from them.  While my son was still young enough that my illness didn’t impact how he saw me as a parent, I recognized such a day would likely come.  I made every effort to keep my health from affecting my role as a husband, teacher, and father.  Teaching posed the most obvious challenges, but I refused to miss time from the classroom unless it was absolutely necessary.  On several occasions, I did IV medication during my lunches at school.  This did not seem extreme to me; I wouldn’t put my ultimate well-being above my career, but I also wouldn’t be at home if there was any way I could be in the classroom.  I later asked some of my colleagues what they thought of this.  One said that she did worry that my health could be negatively affected by my decisions, but understood my need to keep working because of my passion for teaching.  Another said that I did almost too good of a job of making the circumstances seem like no big deal.  She found my commitment admirable, but also worried that I might not be putting myself first.   Students weren’t aware of my lunchtime IV drip unless one of them needed help with an assignment during that time, and I’m sure it just perpetuated a well known fact:  The words “normal” and “Mr. Green” don’t belong in the same sentence. 

The day before Mid-Winter break 2013, I knew I was sick.  I could tell I needed to go on antibiotics and I figured the week off would be just what I needed to be back to my usual self.  I was oh so wrong.  I was in the hospital that Sunday, on IVs and fighting off pneumonia, but certain I wouldn’t miss a day of work.  I focused on the positive: even though I was on oxygen, at least I wasn’t in the ICU on bipap like I had been ten years prior.  I would be back to my normal self in no time.  Then, near the end of my stay in the hospital, a doctor who was completely new to me, and I’m assuming, new to treating CF patients in general, came in the room and told me, and I quote, “You have terrible lungs.”  This doctor is lucky my wife doesn’t know his address, or his house would still be getting egged on a weekly basis.  Thankfully, this was our only instance of bad bedside manner that we’ve really ever encountered at U of M.  Not long after that, we spoke with Dr. Simon, who confirmed that my poor lung function was largely due to scarring from years of infections, and the most recent one had been the tipping point.  When he used the phrase “lung transplant,” it was certainly not the first time I’d heard it, but it was the first time I realized that that my CF journey was headed in a direction that I had never really expected.

Coming home on IVs and on oxygen was bittersweet.  I wanted to believe both were temporary, just like they had been when I got sick right before my wedding.  I didn’t want to confront the fact that needing supplemental oxygen would fundamentally change how I functioned as a father and as a husband.  But the large oxygen concentrator in my home was there for the long haul.  Things I had taken for granted like showering, taking out the garbage, or playing “hallway hockey” with my son were now difficult or impossible because of how little stamina I had, even with the portable oxygen concentrator.  Everyone agreed the best option was for me to go on medical leave for the foreseeable future, and I had to close off the notion that I would teach again any time soon.  At this point, it would have been easy to retreat inward, and see only what CF had taken away from me.  But our family mindset was that this was only temporary, and I needed now to focus on feeling better and getting approved for the lung transplant list by going to the litany of appointments that are required to verify that one’s body is capable of handling such an extreme procedure.  My colleagues and former students showered me with support, but nothing was more crucial than knowing that my immediate and extended family were going to be with me on this journey.

After three months, I was placed on the lung transplant waiting list.  Something as monumental and emotional as cleaning out my classroom and seeing that the mural of Homer Simpson that once graced one of its walls had been painted over somehow lost its significance when I knew that it could be interrupted by a phone call saying that a donor match had been found.  One of the most crucial elements for me was the mentorship that I had in preparation for the surgery.  Someone I met at CF camp and had remained close to had a successful lung transplant three years prior, and he and I kept in close contact as he graciously answered my questions about both the mundane and strange things that happen when one is on the transplant list.  Additionally, Jimeyer has known more CFers and counseled them though their transplant experiences than he could even count.  These two, along with my family and medical team at U of M, kept my mind and body right, and were committed to doing so as long as it took for a donor match to be found.

            It turned out that my wait would be long, and yet sadly, also typical.  We made the best of a year where every holiday, birthday, and vacation was a reminder of how my life had been impacted by this new status quo, and yet we were grateful for all of those occasions as well.  I scootered all around Disney World, my wife and I enjoying every magical moment with our son, trying in those moments not to surrender to the thought that this could be our last family vacation.  As we neared the one-year mark, no amount of optimism and cheer could override the emerging truth that I was getting worse even though I was now in the expert care of both Dr. Simon and Dr. Tammy Ojo, who would become my pulmonologist after the transplant.  I remember getting used to hauling my portable oxygen backpack and then noticing, as I neared the one year anniversary of going on the list, that I was starting to need more oxygen than the portable system could provide.  The thought of such limited mobility terrified me, but I knew that I would be willing to do whatever necessary to be healthy enough to have the surgery once the call came.

Now, I have a small confession… as much as we prepared for the transplant and made a plan…we didn’t over-plan.  We only skimmed the transplant book, we finished packing a week before we got the call, we did little to no research online- and this is not at all like us— We are currently 80% packed for our Disney trip in June and my wife has read every Disney blog known to mankind.  But this was the approach we needed to survive and thrive during the wait.  Even though my health was declining, somehow my family had never been happier.  We had more time to be together, less stress from work, and we appreciated all the mundane activities that we had previously pushed through.  Getting new lungs would save my life, but waiting for the lungs gave my life new meaning.  And on August 20th, 2014, that wait was over.

That morning, the phone rang.  Jenny and Cathy were so glad to finally get a hold of me, as I had not heard my phone ringing during breakfast.  I blame the Frosted Flakes.  I could sense the elation in her voice as she told me that a prospective donor match had been found.  The rest of that day was a parade of pokes, prods, preps, and most of all, waiting. 

Even as I lie there in the Operating Room, there was still a potential for a “dry run,” and that the lungs would not be viable for transplant.  I used humor to remain calm: a phone range in the OR, and I couldn’t make out what was being said.  When the doctor hung up I asked, “What was that, a wrong number?”   My biggest fear was waking up and finding out that they had not been able to perform the operation.  With my favorite music playing over the speakers, I pushed this concern aside, and drifted off into darkness with an extremely deep sense of warmth, positivity, and love.

The biggest misconception about a life saving surgery like this is that the person being operated on is the heroic one.  I didn’t deserve that title in those first days.  All I did there was lie in a bed and let a machine help me breathe for two days while I was unconscious.  It was my wife and her sister, along with my mom and dad, who had the difficult job on those days.  First the uncertainty during the 16 hour surgery, then watching monitors, looking at me with so many tubes and lines coming out of my body, worrying and waiting for me to wake up and breathe on my own.  And I was blissfully unaware.  When I did wake up, I was out of bed and walking on the same day, thanks to PTs like Emily, and realizing that I needed to learn how to breathe again, with the help of Jason, a seven foot tall respiratory therapist.  If you’ve read the latest CF Newsletter, you know the rest of the story.  I’ll be happy to answer any questions in a moment, but the nuts and bolts of it are that my recovery was pretty typical, perhaps aside from the hallucinations induced by the medicine and the migraines.  It was a small price to pay to be able to breathe room air just two weeks after the surgery, after having been on oxygen for over a year and a half.  Before going home, I was well educated on how to handle my new regimen of daily pills.  Cathy and Dr. Ojo assured me that I could call if I needed anything and that there was no such thing as a silly question.  And call them I have!

Today, I am living a life I only dreamed of.  I can no longer wear Adult Small shirts.  Last Saturday at my nephew’s birthday party, my son’s helium balloon was blown out of his hand, but I chased it down before it disappeared into the sky forever.  I can literally run like the wind.  I’ve been able to participate in two fundraisers for Gift of Life Michigan that Canton High School held in my honor.  Starting in June, I will be teaching half-day summer school there to help gauge what the best plan is for my professional career.  My wife and I look forward and see a brighter future than either of us could have reasonably hoped for.  My life has become immeasurably better in every imaginable way because of my family, myriad doctors and nurses, and the decision of one person whom I will never meet and never be able to properly thank.  In lieu of that, I have begun a “gratitude crusade,” telling every person I know, and even a few strangers, like the nurse in Washington DC who was behind me in line waiting for coffee, how much I appreciate them.  I have contacted my donor family and hope that at some future time, I will be able to thank them in person.

One of the novels I taught every year to sophomores, The Great Gatsby, famously ends with the quote, “So we beat on, boats against the current, borne back ceaselessly into the past.  Now, that was never my favorite novel, and I actually can’t even swim, but inasmuch as all of us are boats in the ocean of life, we each set a bearing toward where we want to go.  However, unlike Jay Gatsby, those of us in this room are not obsessed with reliving days gone by.  We are focused on adding tomorrows. 

A life with Cystic Fibrosis is not going to be smooth sailing, but what I’ve learned in my 32 years is that you are better off not fighting the current.  From the fiercest wave to the smallest ripples, when we roll with what comes our way, adapt to new challenges, and embrace exciting opportunities, we get closer to shore.  Where that shore is and what awaits us on it is different for everyone in this room.  But what is true for all of you is that there will be times when the person who is the reason you are here tonight cannot captain his or her ship alone.  In such times, your strength, your faith, and your encouragement will fill their sails and be exactly what they need to stay the course.  


Thank you.