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?

A Birthday Full of Wonder

     This is my 100th post to this blog, a fittingly round number on the day I turn 33 years of age.  Birthdays mean very different things to different people.  For some it is a day to celebrate, to spoil oneself and bask in some well deserved attention.  For others, it is a day to ignore, a reminder of advancing age and little else.  For me, even more so than last year on my first post-transplant birthday, it is a day to ponder.  Because now and forever more, my birthday reminds me of the life of the person who saved mine, a person whose birthdays are now a reminder of absence, what-ifs, and loss.

A "Dad Can Do It" Weekend

     While day-to-day I recognize what an amazing gift my post-transplant health is, sometimes I have an extra clear window into how different and better my life is now than it was when I considered myself "healthy" four or five years ago.

     This past weekend, my son was invited to be in a flag football tournament about an hour away from our home.  The two day affair precluded him from going to hockey on Saturday, but not Sunday.  (We misread the forms and thought we were signing up for a once a weekend group, but, hey, now we get twice as much for our money!)  All told, my son spent four hours playing football and one hour playing hockey over the weekend.  On top of that, my brother-in-law gave us three 50-yard line tickets to the University of Michigan football game-- so my wife, son, and I attended as an entire family for the first time in three seasons. 

     My son was four then, and I remember thinking that I was grateful that the tickets did not require me to walk any stairs, which is only true of a tiny number of seats inside that stadium.  I thought this because it meant that if he wasn't able to behave at the game, it would be very easy to leave, and also because it saved me from the strain and embarrassment of getting winded and coughing when I reached my seat. 

     This past Saturday, I had no concerns about either of these issues.  I had spent the morning walking around an unfamiliar high school football complex, first to find my son's teammates, and later to scout out the nearest bathroom for the parents on the sideline who were concerned about the distance between our field and the main hub of the event.  By comparison, getting to a seat in a football stadium, albeit the largest one in North America, was a breeze.

     Now, all of this is not to say that I'm Superman or something.  (I'm more of a Spidey guy anyway, of course.)  After all the walking, the driving, the hauling of sideline chairs, and the lugging of hockey equipment, I was exhausted on Sunday afternoon and enjoyed a well earned nap.  But so did my wife and son.  Two years ago, I took a daily nap triggered by the exhaustion of just living my daily life, the most demanding aspect of which was folding and putting away laundry.

     The overriding realization that a weekend like the one I just had is this:  I feel so far removed from the man who, two years ago, was on oxygen and got tired just putting on a sweater that I need to take time, like I'm doing now, to record how grateful I am for how far I've come.  It would be easy to let the old me fade into memory and lose appreciation for the restoration my life has undergone.  Instead, just as I did while watching the game with my son, I maintain a laser focus on keeping the 'gratitude train' on its tracks.

After a fantastic weekend, we all wished we could take a nap during the drive home.  Only my son was afforded that pleasure.  Although "pleasure" may be the wrong word based on how uncomfortable he looks.

Over Due and Properly Developed...

     When I went on medical leave, our district was still in the "growing pains" stages of making a focused effort to eliminate the racially predictable gaps in achievement and discipline that, sadly, exist in so many schools around the nation.  I was a leader in this moment, first unofficially and then officially, as we tried to open our eyes and hearts to the realities of our own biases so that we could root them out, identify our personal and collective strengths and weaknesses in working with non-white students, and transform our entire school system into one that provides an equitable experience for all students regardless of their race, ethnicity, or background.  If this very long sentence sounds intense, that's because it is.  If it sounds like it might make teachers uncomfortable, that's because it can.  But in the two and a half years while I was unable to work, we have made marvelous strides toward more open dialogue with students and, crucially, each other, about what it looks like to be a culturally proficient educator-- one who can make every student feel like a welcome contributor to the learning environment. 

     On Tuesday, I was honored to lead a professional development session which I'd previously designed and facilitated in 2012.  Over three years ago, every teacher in my high school saw what I had put together, as teachers and administrators worked with small groups to present scenes of actual situations that had happened at our school.  Audience members were then asked to enter the scenes as the teacher, and replay them so that the racially charged or sensitive comment was handled in a way that would make the person who said it, and everyone in the room, understand the power and potential damage in saying such a thing.

     This time, it was tweaked to include scenes that had happened at the middle school level, and my co-facilitator brought her energy and passion to it during all four of our 90 minute sessions, each of which was attended by the maximum number of teacher-- 35 in the room.  A culinary arts room better served for baking cakes than improvising how to respond when a kid blurts out a racist, albeit positive, stereotype about Asian students.  But we made it work.  We received marvelous feedback.  And I felt like, once again, I've taken another step toward being the fullest version of who I can be with these new lungs and the restored life I cherish each day.

     Was I exhausted at the end of the day?  No.  I was exhausted two-thirds of the way through it, but the adrenaline of improvisation and the passion I have for this topic kept me going.  A great reality check about my current physical limitations-- wrapped inside a chance to show my colleagues, many of whom hadn't seen me in over two years, just how far I've come. 

Our session was conducted in the culinary arts room... My wife works at the district too and took a few photos when she attended. Clearly I've mastered the clicker-- and my posture is better than ever. :)

I Found My Pills on Medicine Hill

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

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.

                     

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:

Transplant-aversary

     On Wednesday, August 20, 2014, I got "the call."  And on Thursday, August 20, 2015, my wife, son, and my mom and dad will celebrate the year that has been possible because of the successful surgery that began that night and continued long into the next morning.  Our plan is to go to Mackinac Island, largely because that is a place my wife and I would go every year.  We understandably put that tradition aside for the past two years.  My mom and dad will join us for the first time; neither of them have been to the island in over 30 years.  We do all this in lieu of celebrating something meaningful in the life of my donor and donor family.  

The Worst Day of My Life (Now with Context!)

     Below is an e-mail I sent to some friends on Thursday, October 5, 2000.  I had been attending Eastern Michigan University for a little over a month.  The subject line was "My Worst Day."

----

      Yesterday, I woke up. That was my first mistake. In a comedy of errors, I was lucky enough to experience the worst day of my life up to this point, and I can't imagine any day being much worse. Although, that's what I kept saying yesterday, figuring the day could only get better after each setback.

Cars 2

     Taking a child with CF to events which, at first glance, seem totally family friendly, does not always go as planned. My parents learned this when I was about eight years old on the night they took me to see the dirt track races in a town near my home. As we sat there watching cars whiz past, kicking up massive amounts of dust, my parents became worried about the environment they had brought me into. 

     The air quality was the second thing that made them question bringing me to the races that night. The first was the man in front of us, who had been swearing almost constantly since the moment we sat down.  Packed tightly in the stands, we didn't have many options but to stay put, and for a little while, my two brothers and I were exposed to a whole new vocabulary. As the noise of the cars drowned out the sailor-mouthed man, we settled in and enjoyed the roaring vehicles and sliding left turns. It wasn't until we got back to our car and were waiting in the jammed parking lot that my parents had a dual realization: they hadn't done my fourth "pounding" of the day, and I'd just been inhaling dusty air for several hours. They had never failed to do four percussion & postural drainage treatments on me per day, and they weren't about to let that change. We arrived home well after 11 pm, but they still did it, and fell asleep on one of their laps in the final downward slanting position. 

     A few years later, we had another situation where cars and CF clashed. My family went to the Kingston Burnouts, where a small town street is blocked off for one night and motor heads bring their tricked out vehicles to show off their aesthetic appeal and horsepower by spinning their tires and squealing down the road.  We arrived and found a small restaurant to have dinner at before the burnouts began, and our seat by the window let us see when the action started. 

     As soon as we stepped out of the restaurant to take a position to watch from the street, I could tell this was no place for me. After a few cars the air was already becoming saturated with the smell of rubber and the haze of exhaust. But we were trapped. Though we could see our vehicle down the street, it was on the other side and blocked off by barriers-- not to mention the cars flying past the excited onlookers.  We had initially turned to walk up the street to where the cars were starting their runs, but my mom and dad had us turn around to return to the restaurant. With a respite from the foul air, we decided to leave immediately and walk all the way down to beyond where the cars finished their runs so we could cross in a safe place. We walked back up the street to our station wagon and I felt a pang of guilt, being the sole reason why my parents and brothers couldn't stay and enjoy the evening's event. But nobody said a word to make me feel worse, and the "it's no big deal" mentality, the blip of me and my illness taking us off our normal path, was forgiven and forgotten without a word. 

     Situations like this were a hallmark of my childhood, which helped tremendously in making me feel like I was no different than anyone else in my family. It wasn't sad, or frustrating, or horrible that we didn't get to see the Kingston Burnouts, just as it wasn't sad, frustrating, or horrible that I was born with Cystic Fibrosis. It just "was," and life moved on-- as far as I was aware-- without turmoil, handwringing or fear. 

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.

Beautiful Explosion of Hope

     On July 2nd, the FDA announced that it had approved Orkambi, the Vertex-made drug that offers an unprecedented treatment option for people with the most common CF mutation (which happens to be the one I have).  This article contains all of the relevant details from the press release.  The words in black and white represent a level of hope for almost one third of Cystic Fibrosis patients that surpasses what many ever dreamed possible.

     Innumerable people whose lives have been touched by this disease view Tuesday's announcement as a long awaited trumpet which will sally forth a new era in CF care.  With the medicine being shipped to pharmacies as I type these words, I can't imagine or express how it would feel to be the parent of a child with CF, for whom this announcement must seem tantamount to a redefined future.  But as always, I am mindful of the other perspective:  the parents of the ten year old whose child has the mutation (double delta F508) this medicine treats, but is two years away from being allowed to take Orkambi, since it is currently only approved for those 12 and older.  Or the parents of the pre-teen who doesn't have the CF mutation treated by this new drug or Kalydeco, which works in the same way and was approved in 2012.  The gaps in who these incredible medicines can benefit within the CF population, along with the efficacy of the drug, are preventing everyone from using the word "cure," but a quick glance at recent posts here at the CF Blogroll demonstrate how positively most people are reacting to last week's wonderful news.  This one in particular captures the sentiment of a person with CF very well...

     But what about someone like me, whose lungs do not have and will never have the genetic flaw of Cystic Fibrosis lungs?  I have no clue.  The day the announcement was made, I was seeing my pulmonologist, blowing my highest FEV1 yet (95% Wo0t wOot!) and totally unaware that the approval was happening that day.  When I'd asked about Orkambi a few weeks ago, I was given a relatively canned answer:  that they don't like to theorize on giving people medicines that aren't approved by the FDA yet.  Which I can understand.  I also realize that the odds are very slim that anyone with transplanted lungs took part in any sort of trial leading up to the approval of Orkambi.  I will inquire next week about what the drug might mean for transplanted CF people such as myself, and happily volunteer to be in any studies, which I've done before and always had a positive experience with. 

     For now, though, the weekend's fireworks were, in the lives of a large number of CFers and their families, as much about the prospect of breaking free from the restrictions imposed by Cystic Fibrosis as they were about America's enduring freedom.  We continue to hope that Orkambi is one step on the road toward every single person with CF celebrating his or her independence from pills, puffers, and pulmonary problems.  

     

Spidey Swings by Camp Michitanki

    The time I spent last Friday at Camp Michitanki, a week long sleep-away camp for kids who have received an organ transplant, was the most enjoyable volunteer experience I have ever been a part of.  Probably because I was dressed as Spider-Man for most of the time.  I'm going to go into a lot more detail than would ever be necessary for the book, but that's okay, because I want to have a record of every amazing moment that I was able to witness and be a part of last week.

A Closer Look in the Magic Mirror

     Going to Disney World (and Land) is unlike any other vacation experience for a variety of reasons.  One of the most visible is that people are encouraged to make a public declaration of their reason for being there.  The parks distribute buttons which indicate what a person is celebrating... first visit, birthday, family reunion, anniversary, or honeymoon.  The last of these is also frequently made apparent by mouse ears or a shirt indicating "bride" and "groom."  All of these proclamations are encouraged by Disney, and if you are celebrating something they don't have a specific button for, their generic one allows guests to write on the button to explain what the special occasion is.  So, my wife, son, and I each made a button that said something about my lung transplant.

Green and Sons

     While I've written a lot about fatherhood for this blog and in my eventual book, as the title would lead you to believe, I have not yet written in-depth about my own father.  While my Father's Day really happened a week early, I spent the actual day on the road and wasn't able to see my own dad.  He and I spoke on the phone, and we'd given him his present when we saw him during our last trip to my hometown.  Of course, I could give him presents every day for the rest of his life and still not be able to repay him for the gift he gave me, one which had a defining impact on my life:  he raised me no differently than my other two brothers.

"Never Tell Me the Odds."

     My Father's Day experience this year consisted mostly of driving from Kentucky to Michigan as we returned home from our vacation in Florida.  But my transcendent moment as a dad came a week earlier, when I was able to use my new lungs to propel my son and I into an experience of a lifetime at Hollywood Studio's Star Wars Weekend.

Some Pain, All Gain

     On our first full day at Disney World, my experiences added another layer of appreciation to an already multitiered gratitude tower.  At no point during the day did my health impact our experience. It would have been possible to put the ease with with we walked around and enjoyed the Magic Kingdom as a family in the back of my mind, but I'm grateful that my body gave me an achy reminder all the way home.  

My Own Personal Super Bowl

     We kicked off our 2015 Disney World vacation by "righting a wrong" from last year.  I had not planned to do anything with my son on the football field at the All Star Sports resort during our trip in 2014, because we didn't even know it existed.  But had we been aware of it, my need for supplemental oxygen and use of a motorized scooter would have made it difficult to play with him on it.  After we arrived and saw how much he wanted to play with us on the field, we bought a football at the gift shop so I could at least throw a ball to him.  While it was nice to toss it to him as I stood next to my scooter, it was almost too tantalizing to a five year old who longed for me to be able to chase him as he spun and juked toward the end zone.  To make the most of a less than ideal situation, he and I made a routine of racing to the goal posts as we crossed the field to get from our room to the bus pick-up drop off area each morning.

The Workaday World

     Just like yesterday's entry, I'd like to start this one with housekeeping... but of a different sort.  If you are someone reading this in a country other than the U.S., I would love it if you could post a comment to tell me how you learned of this blog. And, for all of you, if you aren't into commenting, I added a section below each post where you can just click on one of several boxes, which gives me feedback on what you thought of that post.  I did this about a week ago, but had forgotten to mention it.  Thanks for any and all feedback you have given me or will give in the future.

Tobi or Not Tobi, That is the Question *

     Being on Tobi, 28 days on, 28 days off, is a familiar routine for most people with cystic fibrosis.  Like the phases of the moon, being on Tobi is part of a natural cycle, but instead of affecting ocean tides, it affects how we feel.  For me, I always felt better when I was on Tobi than when I was in an "off" cycle.  I'm sure some of that was psychological, but the medicine obviously works too.  For a long time, I would not be on any additional medication during the "off" cycle, but in the years before my transplant I would do inhaled Colistan and, once it was approved, Cayston.  But whether it was something scientific or more of a security blanket effect, I still felt best on Tobi.