Saturday, August 20, 2016

And It Moves Us All

This coming week I will have a "longread" that captures my thoughts, feelings, and experiences from honor my donor and celebrating my second Transplantaversary. For the moment, as the clock nears the hour when I was wheeled back for surgery two years ago, I share this photo and its context:

As you can tell, my son is pointing... but at what?  

He's getting me to look at a cloud formation directly in front of the setting sun. He realized, before I did, that it looked like the famous cliff from the Lion King. He said, "Dad, doesn't that look like the circle of life?"  

Considering the circumstances that led us to that beach, that moment... It was pristine, innocently wise, and unforgettable. 

Special thanks to my niece Taylor who was using her fancy camera to take photos throughout the evening. You will see more of her work in future posts.

 

Monday, July 18, 2016

52 Steps to My First Vlog


I've been to many beaches since my transplant nearly two years ago-- but not this one. The first and only other time I've been to my brother-in-law's cottage, I was on the transplant list, on oxygen, and definitely not ready to face the steep stairs to the beach. 

I stayed up near the volleyball net and tried, without much success, to chase my son around while wearing a portable oxygen concentrator on my back. 

This visit was so much different. It included a lightsaber battle and races on the sand. It was so satisfying to reclaim what I'd been unable to do two years ago. 

Tuesday, June 21, 2016

Father's Day Collaboration

This year, I spent Father's Day totally one-on-one with my son, since my wife is currently taking her mom and aunt on a tour of Ireland, an my own dad's plans (along with the plans of my two brothers) did not permit all of us to be in the same place at the same time.

Thursday, May 26, 2016

Memorialis: Without my Donor

 

"Memorialis" is Latin for "serving as a reminder."  The past two weekends have been filled with moments that have reminded me of how fortunate I am.  They've been crammed with so many joyful experiences-- events that I would not have lived to see without my donor.  In this post I examine what these past two weekends would have been like for my wife and son if my donor hadn't given me this second chance at life...

Thursday, May 19, 2016

"Eye of the Tiger"


Last week, I shared the Rocky Recreation video here on the blog, but also to the Gift of Life Michigan Facebook page.  Since that day, it has been viewed over 18,000 times.  As of yesterday, that number was 16,000.  One of the individuals who runs the GOLM Facebook page sent me an email with more metrics, and they are in the image below. 

          I know one cannot declare his or herself as having "gone viral," but my wife said that I am one
          local news story or a share on the Donate Life America webpage from earning that label.

          I hope, beyond reaching people already invested in the concept of organ and tissue donation,
          that I am one day able to reach a large audience of those who are not the most likely candidates
          to consider becoming donors. 

          Right now I am starting small; I have spoken to 180+ kids over the past five days, all of whom
          are students at the high school I used to teach at.  Speaking to them about my transplant
          experience and the importance of being a donor is, I feel, the least I can do with my skills and
          this incredible second chance at life.  I hope to share portions of these talks with you in the
          coming days.

 

Monday, May 9, 2016

"Gonna Fly Now"

     This past weekend held many "firsts" for me.  My first trip to the Philadelphia.  My first time flying alone.  And, the primary reason for this post, my first time flying since the transplant.

Monday, May 2, 2016

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.  

Thursday, April 28, 2016

"Have You Always Been Humorous?"

     I said something funny at lunch yesterday.  I could probably start a blog entry that way any day of the week and it would be a true statement.  That may sound braggadocious (what a fantastic word) but making jokes during conversation is "my thing."  So, when the person across from me asked, thoughtfully and earnestly, "Have you always been humorous?" I was, for a moment, thrown off.

Monday, April 11, 2016

And In The End, The Fandom You Fake May Outlast the Friendships You Make


First off, yes, that title is quite a reach, but it is a reference to a Beatles lyric.  Good Human Points to the first person who posts which album the song referenced here is from.  :)
     Secondly, I want to thank the many, many people whose readership of this blog has pushed me to over 10,000 views in 11 months.  I will never know for sure how many of you are out there reading this regularly or popping in once or twice a month, but I am grateful to have you. 

   Okay, onto the actual post...  In honor of the Detroit Red Wings making the playoffs for 25 consecutive years, it's about Canada's national pastime and my favorite sport to watch.  Let's open with a question:

How many people who've never laced 'em up and played a game can say their life was defined by the sport of hockey?

Friday, March 25, 2016

Pot 'O Gold


     While I always enjoyed days that invited teachers and students to dress in costume or some other silly fashion, one of my favorites has always been St. Patrick's Day.  Because of the timing of my leave, in 2013 I didn't get to dress up like a leprechaun and dance a jig, which annually delighted some students and confused others.  This year, I was interested to see how 7th graders would respond.  While their initial comments when they walked in were less than positive ("You've sunk to a new low..." and "This is way over the top") at the end of class, when I was going to deliver on the jig I promised, I could tell they were more "into" it than my 10th graders had been in years past.  That is why the actual footage of me doing a jig is only one second long.  That was literally the maximum length I could share publicly without there being at least one student clapping, laughing, jumping, or actually dancing along side me.  I did the jig for 63 seconds, and my lungs didn't let me down!  Was I a bit winded?  Sure!  But wouldn't you anyone be after a minute long jig?  ;)
 
 
 
 
video

Monday, March 14, 2016

My Lip Sync Debut at the 1994 Pumpkin Festival

     When I was in 7th grade, I participated in a Lip Sync competition for the first time.  My best friend at the time, and both of our younger brothers (who were also best friends) collaborated on a performance of Ace of Base's "The Sign," which was incredibly popular at the time (and is still a solid pop song, if you ask me).  We won 3rd place, and I was officially bitten by the "lip sync bug."  Please forgive the quality of the video-- sometimes something is trapped on a VHS tape and your mom records it from the TV with her camera.

Here's the link to the video.  I'm the short person dancing like a fool in a blonde wig...

https://www.youtube.com/watch?v=B3KshiLGurU

Thursday, March 10, 2016

Middle School Talent Show

I was honored to be a part of the Middle School Talent Show last Friday, along with several other teachers, all of whom did some sort of lip sync performance.  Lip syncing is, by far, the type of performance most in my wheelhouse.  I am a terrible singer, but I've done lip sync performances in competitions (my first was when I was in 7th grade) and have performed a lip sync for my students each time I taught Drama and Speech at the high school (to help inspire them before they did their own).  I allowed my 7th grade students to vote on which song I would do, and the top vote getter was "Single Ladies" by BeyoncĂ©.  I was grateful that the runner-up song (which only lost by two votes) was one that was more doable.  I could probably handle the dancing for Single Ladies (I danced to it while following the choreography on a large screen when chaperoning Prom last year) or just the lip syncing, but not both.  So, "Wrecking Ball" was the song I did, and, as the video shows, I was able to win over the students despite their initial uncertainty, and the fact that, out of everyone in the crowd, only 35 of the students actually know me, since I teach only one class of students each day.

Please enjoy "Wrecking Ball," with the Physical Education teacher making a surprise appearance in the background.  (His role turned out to be my son's favorite part, as he requested we re-watch the video to see his antics multiple times.)

https://www.youtube.com/watch?v=gilwTifM43k

Tuesday, February 23, 2016

My Old Poetry -- "The Time It Was"

     I am presently finishing a poetry unit with my 7th grade students.  It's been an interesting experience, particularly because some students are very adept at writing poetry, and others, naturally, have their best poetry writing years ahead of them.  I searched out some of my own poetry, from middle and high school, to share it with them and indulge myself in some nostalgia.  I found many from a project I was permitted to create in 7th grade, one my teacher encouraged because I was so interested in writing.  But the poem that stuck out to me the most was from when I was in 10th or 11th grade.  I don't recall if it was an assignment or just sentiment that produced it, but it encapsulates a viewpoint I'd held well before I wrote it--  even though it reads like a life-altering declaration.  If I remember correctly, it was mostly inspired by seeing my peers do less than they could with the skills, talents, and opportunities in front of them.  It is called "The Time It Was" and, bear in mind, was written by someone with all the worldly experience of a 15 year old. 

The Time It Was

It was today when I was walking
That I heard two people talking
Of chances missed and love gone by,
And how their past had gone awry.

It was tomorrow, this got me thinking
That through life I had been slinking.
Taking not a chance and grasping not a string,
Finding not a love and planning not a thing.

It was yesterday I had been living
Without a thought to my future giving.
Living only day to day
Letting life pass me all the way.

It was now, I began deciding
From life's risks I would stop hiding.
I made a plan to think ahead
And stopped living like I was dead.

It was never when I was regretting,
Resolving that now I would start letting
Myself do a thing never previously thought,
And seeing the changes to my life it had wrought.

It was since then I have been seeing
Today and tomorrow-- and stopped fleeing.
I now plan to chance and chance to plan
And for it I am a better man.

Tuesday, February 16, 2016

More Memories Courtesy of Mark Z...

Thanks to Facebook and its "Today in the Past" feature, I found my own same day account of February 15, 2013. Clearly I understood how uniquely incredible that class period was in the moment. It would have been a day that stuck with me even if it hadn't been my (as of now) last high school teaching experience...

"I had to stay home yesterday.  So the debate about understanding LOVE through literature and science was pushed to today.  It was going horribly.  I couldn't understand why.  Come to find out, five students were upset when the sub read my note to them which said the debate would happen today and we wouldn't be going to the student-written Black History Month play as I had intended.  They reasoned that the play was just as connected to our curriculum and a one-time-only experience-- we could have done the debate any other day.  So they got 28 of the 32 students to agree to sabotage the debate by not speaking during it.  A comment by one of the four non-saboteurs outed the plan, and a remarkable, constructive discussion about fairness, race, and a need for increased awareness of the lived experiences of others occurred.  Over half the class predicted when they agreed to the plan that I would "flip out" if/when I found out about it, but they could not have been more wrong.  I can't remember the last time I was so proud of my students.  Even though an e-mail to me yesterday might have avoided all of this, I am so glad that these students have learned to stand up for themselves and each other for causes that really matter to them.  That is what I told them before they left.  

So we didn't debate love.  We didn't see the play.  Instead life imitated art, and a play dealing with race & focused on one form of love, compassion, debuted right there in my classroom.  Days like today are the reason I chose this career."

Monday, February 15, 2016

A "Last"ing Memory

This first appeared as a lengthy Facebook post last year. On February 13, 2013 (02.13.2013-- good thing I'm not superstitious) I did not know I was experiencing a "last."  Hopefully it turns out not be be a last, but that will be determined by whether or not HR moves me from teaching middle school to high school next year. In the meantime, here is what I posted last year at this time, when I was still uncertain if I'd ever be able to teach again at all. It includes the first hand account of one of the protest organizers.  She wrote about it for a Senior writing class and shared the essay with me.



     Today marks two years since I last taught at Canton High School.  On that day, I staged a debate in my American Lit. class, and because I was out sick the day before, I kept Thursday's plan intact and cancelled our initial Friday plan-- going to the student produced African American History performance. When I announced this change, it greatly upset the three young African American girls in the class. In less than a 24 hour period, they organized a protest: everyone refused to speak during the debate. One of the leaders of this initiative, Victoria, wrote an essay about it and shared it with me earlier this week. 

Below is a portion of that essay; "the male" is a boy who called the class protest and the African American History performance "stupid."

"Mr. Green realized what was happening as the drama continued to unfold with my friends and the male. He didn’t understand how we felt misunderstood, unimportant and didn’t wanted to fall within the stereotypes that were made for us. We were smart, a lethal weapon with our minds, just a different skin tone. It was my first time having an actual confrontation with someone and not ignoring it like I ignore the constant whispers I was used to hearing.

Mr. Green yelled for it to stop and then he quietly sobbed. We didn’t know why he was crying but those who had initiated the protest with me and I cried; we cried for our struggles. I would never forget the words Mr. Green said to us. “I’ve never been so proud of my students for sticking up for something as important as race”. He acknowledged race and he believed in giving other people the knowledge of other cultures. He was really proud of us and he stated it was one of his best moments in his teaching experience. We couldn’t go to the African American play but we used the rest of the debate time to talk about what it was like to be African American.

I was able to share my feelings and it helped me grow as a person. I was very proud of myself because I was able to make an impact on the students who did and didn’t understand our struggle."

There are myriad factors in play that will determine whether I teach high school again, many of them beyond my control. But if the events related above indeed turn out to be my teacher swan song, I'll be proud to have gone out on such a high note.

Tuesday, February 2, 2016

The Pre-Transplanted Dad: Shy as a Whistle Pig

I wrote this five years ago today... part of my motivation for sharing it may or may not be tied to how much I like the phrase "whistle pig."

Well, it is Groundhog Day, and the one in Pennsylvania saw no shadow for only the 16th time.  Legend has it that if he sees his shadow, the reason he goes back into his stump, or hole, or wherever, is due to fright, even though in reality a groundhog (also known as a whistle pig or woodchuck) is a rather tenacious creature.  Even if prognosticators like Punxsutawney Phi are afraid of their shadows, is that such a bad thing?  More to the point, is a student necessarily worse off if he or she is more of a shrinking violet in the classroom?  I can't speak from experience on this matter, at least from the student standpoint.  As a third grader I was once punished with the loss of outdoor recess privileges because I overzealously answered a question by shouting out my response when the teacher was deliberately ignoring me so that other students could be given a chance to participate in the class.  I was still the very same, "Ooh, ooh, pick me!" type in high school too.  But I certainly don't see that approach as the only means of being successful now that I'm the one doing the question asking and not the hand raising.  Ever year I have several students who fit the category of "shy" that do exceedingly well in the class.  Through assessments, particularly essays, these students demonstrate knowledge and skills that are no less well developed than their more vocal and actively involved peers.

When I consider how this relates to my son, it doesn't seem to, at least for now.  At the moment, it is very difficult to imagine him being anything besides outgoing.  He talks almost non-stop, and even if some translation is required (fish is currently "shiFF"), he yearns to be social with both family and new acquaintances.  While I know his current gregarious nature is not an absolute guarantee that he will be as genial ten years from now, it is hard to envision him any other way.  Regardless of whether or not my son, or any future children I may have, ends up being an introverted teen or an extroverted one, I know that both sides of the coin can be successful in the classroom-- and one side of it is a lot less likely to end up alone at a desk while everyone else is playing at recess.

With five more years of fatherhood under my belt since writing this, and watching my son's personality progress over the past half-decade, it is clear that my son enjoys the spotlight-- on his terms.  He absolutely trends toward being outgoing, but can be shy at times too.  His cousins recently paid us a visit, and to thank one of them for his help in finishing an intense Lego build, my son decided to write him a song.  But, when it came to performing it, my son requested that I sing it with him.

It has been fascinating to see him become a multi-layered person, and to note which traits he seems to have gotten from his mom, and which ones seem to stem directly from me.  My most important takeaway has been to simply enjoy who he is now, because he is constantly progressing toward an older, wiser person.  I want to enjoy this "age of innocence," one where he puts faith in rodent weather forecasts, to its fullest extent while it lasts.

Friday, January 29, 2016

A Little Dab'll Do Ya

I kept up my end of the agreement after my students went an entire class period (over 50 minutes!) without asking me to dance, mentioning dancing in general, or doing any actual dancing themselves. I promised I would "dab" for them if they could achieve this feat, but decided to pretend I didn't know what I was doing and trolled them by playing dumb and doing other dances first. And I couldn't resist introducing them to the Batusi ("popularized" by Adam West when he portrayed Batman in the 60's) before I descended from my platform. I wish I could post the entire video, but several of my students are in it, so the pictures will have to suffice. :)


This is precisely the sort of goofy moment I missed so much when I was on leave from teaching. It was made even more memorable by the fact that I had dressed up for Winter Gear Spirit Day. 

Now we'll see if this earns me enough good will with my students to get them to write and read poetry in the upcoming unit of study without complaining. 

Tuesday, January 26, 2016

The (Hockey) Poster Child of Health

We didn't make it on the TV broadcast or JoeVision, but it wasn't for lack of trying!
(For those who don't know, Dylan Larkin is the Red Wings' 19 year old star rookie. He's closer in age to my son than he is me!

Monday, January 25, 2016

"I Never Saw That Coming"

     One of the first TV/Movie quotes I recall my son using perfectly in context is "I never saw that coming," spoken by a villain in a Lego Avengers show.  About two years ago, something sudden and surprising happened, and my son immediately used this quote in response.  Since we watched the show together, I laughed and laughed, on a slightly deeper level than my wife, who also found it hilarious, but didn't know our son was quoting a show.  This quote has been most apropos during the low and high points of my recent 24 hour medical / emotional roller coaster.

    The preliminary page of results of my bronchoscopy on Wednesday revealed nothing too surprising, based on my symptoms.  Some thick areas of mucus, some inflammation.  All of it lined up.  Since I'd left the clinic the day prior hearing my doctor say that IV antibiotics were the standard treatment for my symptoms, and I'd done IVs at home with my old lungs more times than I care to remember, I assumed I would receive a call telling me that the appropriate medicines would be sent to my home on Thursday.

     When I got the call Thursday afternoon, my assumption proved wrong.  My doctor wanted me to be admitted to the hospital later that evening, as soon as a room was available.  "I never saw that coming..."

     Another factor which made the news worse was that it was being relayed not by my doctor or transplant nurse, but someone filling in while those two dealt with other pressing issues.  This has happened before, and rightly so, but in this situation, I really wanted to have more answers and clarification about why I couldn't avoid a hospital stay.  The notes left by my care team did not have such answers. 

     There is never a "good" time to be hospitalized.  Every time I've been admitted, the same thought process occurs-- what was I planning on doing that I now must cancel, rearrange, or delay?  There is always an event, a project, a trip, or a stay-at-home-cuddling-weekend that is impacted by a hospital stay.  In this particular case, I spoke to my wife, and we evaluated all the things in the near future that must be recalibrated.  The first priority was her cancelling a trip to her hometown to plan a summer trip to Ireland with her mom and aunt.  Anything else we would figure out later. 

     Then came the negotiating.  I talked to my transplant nurse and lobbied for staying at home and starting the IVs.  My biggest hesitation centered around the prospect of being admitted and kept in the hospital into next week, missing work and time with my family unnecessarily.  After all, although I was "sick," I only missed days of work that week for medical appointments, not because I wasn't physically well enough to teach.  Putting me in the hospital seemed like quite a leap.  But the preliminary test results and need for me to be monitored while they put me on an antibiotic I'd not been on before made the hospitalization necessary.  I packed up some clothes, something to read, and my laptop, and prepared to leave.  We explained to my son that the doctors needed to give me medicine and I would be home soon, we just weren't sure when that would be.

     Upon my arrival, I wrote on the whiteboard next to "Goals": Establish medical plan and go home ASAP.  It seemed like wishful thinking as I put the cap on the marker.  But my experience at the hospital could not have been better.  They began giving me IVs almost immediately, through the port in my chest-- which I lobbied to keep after the transplant, since even though I will need it much less frequently with these new lungs, it's way better than having a PICC line (which enters inside the upper arm and goes straight to the heart) placed each time I needed IV meds.  A late-night CAT scan of my chest revealed my right lung had pneumonia, and the final results from my bronch from Wednesday came back, demonstrating that yes, I was on the best medicine for my particular infection.  Evidence of mild rejection also mimics that of infection, so I would be treated for that as well with high doses of steroids.  The night I arrived, when the nurse practicioner said that would happen "three or four days from now" I quickly jumped in to clarify whether or not I needed to be in the hospital for that.  He said it would depend on which steroid approach they went with.  In the morning, they had decided it would be the sort I could take orally at home-- all of which meant that I could leave later that day.  Once again, "I never saw that coming."

     My wife and I spent the day together, since she had already expected to be not working on Friday, she was by my side instead of planning a vacation with her family.  We celebrated the wonderful, unexpected news with some lunch from the cafeteria, and I was discharged in time to pick up my son from school.  We had emailed his teacher the night before to inform her of the situation.  She replied before noon the next day telling us that my son had immediately told her about what was going on:  "My dad is in the hospital because the doctors want to give him some medicine.  I don't know when he'll be home."  As heartbreaking as that may sound, she said he relayed the information without seeming sad, and was having a great day.  Water off a duck's back. 

     I had tears in my eyes as I drove to his school, knowing he would be elated to see me, and even more happy that my surprisingly short stay meant that our weekend plan could proceed unchanged:  I would take him to the Red Wings game, his first, instead of his mom filling my shoes.  The hug I got when he saw me was great, but was later overshadowed by high fiving him as we jumped up and down screaming each time the Wings scored Saturday night. 

     As we prepared signs before the game and put on our gear, I almost couldn't believe that the roller coaster of the previous two days had led me to that point.  Even if someone had told me exactly how Thursday to Saturday of last week would play out, I still don't think I would have saw it coming.

 

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.

Thursday, January 14, 2016

What is a String Man?


"It was the role I was born to play."  I've said that in response to numerous people who have asked me, "Who is String Man?"  (and once, "What is a String Man?")  I quickly followed by explaining that the middle school orchestra needed someone to play the titular role during their performance of the song, "The Adventures of String Man."  The person in the role basically upstages the kids for three minutes and then gets to go sit down and watch the rest of the show.  It's a sweet gig.

Wednesday, January 13, 2016

Holiday Nights and other Routine Assessments of Physical Health

     Before the Christmas holiday, my wife, son, and I continued our annual tradition of going to The Henry Ford Museum's "Holiday Nights," where you walk around Greenfield Village and enjoy a plethora of Christmas themed diversions.  Our personal favorite is the storyteller who recites "A Visit from St. Nicholas."  As we left the van in the unseasonably warm weather, my wife and I talked about how in past years it had been so much colder, and the year it rained and I stayed home, too sick to attend.  This, she said, was not as bad as 2012, when on the long walk back from the exit gates to the parking lot, I needed to stop several times and sit down to catch my breath.  She said that was the most worried, up to that point, that she'd felt about my health since my first hospitalization in 2004.  Little did we know that less than two months after that night, the phrase "lung transplant" would ring like a bell in the biting winter air.