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.