I've written before about a gift that only you can give, but recent events have caused me to reflect on a different sort of gift. One that only you can give, but this time, the recipient is yourself. Last night my wife and I sent our contrition to our nephew's time capsule, which his fifth grade teacher is making for each student, to be opened in seven years upon the student's graduation from high school. While the letters he reads on that day from us, his siblings, and his mom and dad will no doubt be very intriguing, the letter he is writing and putting in there himself may be the most revealing and re-read letter of the bunch-- because there is no price that can be put on having a clear window into who we once were and how we viewed our life and the world in our past.
Friday, May 29, 2015
Thursday, May 28, 2015
Sometimes everything goes your way. And sometimes you end up driving into a telephone pole. After graduating from Eastern in the spring of 2003, I, like thousands of other would-be teachers, was on the hunt for a job. I applied to almost every position imaginable, including a job in Benton Harbor where I would have been the only English teacher in the whole school, as well as one in Cedar Springs, the Red Flannel capital of the world. Those interviews did not pan out, but a chance connection that my wife had through her job at the time got my foot in the door at Ypsilanti High School. They were in desperate need of a teacher to fill in as a long-term substitute for one of their English teachers who was on maternity leave. And I was just the person for the job.
Wednesday, May 27, 2015
It is a fact of life that as we age, our body betrays us. We need glasses to read after a life of 20/20 vision. Our memory refuses to recall the name of a street or a childhood pet. We recognize that we can't hear as well as we used to. In fact, even a teenager typically has a broader hearing range than an adult, assuming the former hasn't destroyed his or her ear drums by constantly keeping Taylor Swift or Nicki Minaj turned up to 11. In the case of CFers, some of the maintenance medicine can prematurely damage our hearing in two ways-- tinnitus, or ringing in the ears, and the loss of hearing (often in a particular range). The only time I experienced ringing in my ears was immediately after the transplant when I was first put on the new regimen of meds and the doctors were striking the right balance and levels. But for roughly the past five years, I have been dealing with high pitch hearing loss.
Tuesday, May 26, 2015
My relationship with dogs as a child could best be described as "mildly traumatic." I was given a beagle as a birthday gift when I was hardly old enough to remember it, but the pictures tell me it did happen. The reason I don't remember Scrappers (he ate scraps from the table!) is because his all-night barking from his doghouse bothered our neighbors. Though we lived on an acre of wooded land, my childhood home was on a main stretch of road where cars never drove slower than 55. We couldn't let him roam, and so we gave him to a farmer who could. My brothers and I were upset, but we hand't had much time to form a bond with him prior to his departure. We had indoor cats, and that was fine with me. My pet quota was met. Particularly after I was attacked by a stray dog on the playground in fourth grade.
Monday, May 25, 2015
Today, as our country honors those who died while serving America, I'd like to also bring attention to a monument that was created as a tribute to everyone with cystic fibrosis, in particular two teenage siblings who the artist, Hugh Timlin, wished to memorialize after they passed away.
Much more information, including where in Detroit it can be found, is available at this link.
Friday, May 22, 2015
Since this is a blog about my CF journey designed in part to keep driving me toward the goal of writing a book, I have and will continue to avoid making these posts about giving advice. But I make an exception here because, as of today, I have been married for 11 years, which qualifies me speak on this subject. My advice to my friend who got married a week ago today, and to any couple, is that expressing your gratitude for the things your spouse does, from the small everyday chores, to the major tasks, is a cornerstone of marriage. It sounds simple, because it is simple. But it is the simplest aspects of a relationship that can be overlooked, taken for granted, or lost under the stress of everyday life. So, today, I dedicate this paean to Kayla Green, who has made my life better in ways that I can't adequately express. But that won't stop me from trying.
Thursday, May 21, 2015
In honor of David Letterman's departure from the airways last night, I am doing a Top Ten List. Based on only my own experiences, here are the Top Ten Most Surprising Things about a Bilateral Lung Transplant.
10. The lungs weren't even in the room yet when the anesthesiologist put me under. (Waking up and finding out the on-site evaluation demonstrated that the lungs weren't viable for transplant was my biggest fear once I got into the OR.)
Wednesday, May 20, 2015
When I was 12, I was asked to meet someone named Wendy and her son, fellow residents of my small hometown. I was told he had CF, just like me. But, even by that age, I knew there was nobody who had CF "just like me." I was not aware at the time that my mutation is the most common one, but that didn't really matter. At CF Camp, which had been discontinued due to the dangers of cross contamination a few years before, I recognized that there was a wide spectrum of what life with CF was like, even though most of the kids there seemed to be having an experience much like mine. I could tell some were having more problems, and some were in better shape than me. (Camp also erased my notion that having CF and being short were inexorably linked. The more you know!) Even at 12, I had some trepidation about meeting a mom who had a baby with CF. I recognized then, and I know even more clearly now, that the story of my CF journey was not offered as a guarantee, blueprint, or prophecy. I was there to offer hope.
Tuesday, May 19, 2015
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.")
Monday, May 18, 2015
Last Friday, I attended a wedding. While I had gone to my cousin's nuptials in late October, at the time, I was very immuno-suppresed, and still working my way toward 75% lung function. I was able to dance, but I was not quite the prime physical specimen that I have since become. At both weddings, however, beyond just being able to attend and dance, dance, dance, I was able to "show off" my lungs to people who had supported me throughout the transplant and recovery process. In October, a vast majority of my Mom's side of the family was seeing me for the first time since the surgery. I got so many hugs, answered so many questions, and used so much hand sanitizer. At the ceremony and reception, I was the masked man, attending my first crowded indoor activity, always conscious of what I touched, where I put my hands, and who I was next to (little kid, please aim your nose elsewhere). Once the food was in everyone's bellies, I was I was particularly excited to hit the dance floor with my wife, especially in light of a wedding experience we had last summer, when my lung function and health were approaching their nadir.
Friday, May 15, 2015
On February 26th of this year, I was honored to be invited to speak at Michigan's first officially recognized Rare Disease Day at our state capital. While Cystic Fibrosis itself is not considered a "rare disease," my experiences with insurance coverage offered a vision of what could be if legislation like the bill we were there to advocate for was passed. It would not have made Children's Special Health Care Services, the insurance that has kept my life with CF (including the transplant) free from crushing medical debt, available to all of its childhood recipients through adulthood. However, it would be an important step toward making the financial lives of those who suffer from a rare disease less of a struggle. My four minute speech was much different from many of the other stories, which were often raw displays of the frustration that naturally comes with raising a child with a chronic illness, especially as it concerns medical bills.
Thursday, May 14, 2015
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.
Wednesday, May 13, 2015
My sense of smell has always been a little "jacked up." Sometimes I can smell dinner cooking from across the house, other times it's on my plate and barely registers. My wife will claim that our dog's blanket has a horrible stench, and I don't even notice-- but when she lights a scented candle, I can't handle it; its aroma is too powerful and I feel like it's suffocating me. If this weren't an actual medical "thing," one would think I was just playing a long, unfunny prank. But it has always been this way. Throughout my entire childhood, the most common reason I needed antibiotics was sinusitis due to CF. My pediatrician probably wrote that more times than he cares to remember. My pulmonologist noticed that I had nose polyps around 7th grade and she sent me to an Ear, Nose, and Throat specialist to determine what, exactly, was going on up there. After a few visits to this doctor to monitor the polyps, he told me that I could elect to have them removed. The benefits would outweigh the risks, he assured me: my olfactory sense would likely be improved, and I would have fewer sinus infections. The only downsides were that I might end up with two black eyes from the surgery, and there was a chance that they wouldn't be able to get all of the polyps. Those were the physical implications. The emotional one was that I had never been in the hospital before, so the whole process was a bit scary to me.
Tuesday, May 12, 2015
On Sunday, my son walked around the house holding his baseball mitt. He climbed on a stool to get mine, which hangs as decoration on the wall in his room, beneath his grandfather's glove. He quietly searched the house for a suitable ball, finally deciding the one normally used for roller hockey was soft enough to play with. I did not witness any of this. All I saw was the culmination: a six year old standing at the back door with his arms full-- "Hey dad, want to go play catch?"
Monday, May 11, 2015
If you didn't see enough Mother's Day appreciation on social media yesterday, here is a belated testimony to mothers, and, in particular, mothers of kids with Cystic Fibrosis. I can't speak for all CF moms, or any of them, really, since I am not one. I can, however, be grateful for the CF mom I have, and for how, through her guiding hand, I grew up into someone who was not limited or defined by a couple of mutated genes.
Friday, May 8, 2015
One day when I was probably ten or eleven, I saw a photo of me as a toddler. In it, my shoulder and chest are wrapped up in gauze and medical tape. I asked my mom what was going on in the picture. She told me that one morning, when I was around three years old, I was with her in the kitchen. She poured a cup of coffee, and stepped away from the counter for just a second. That was enough time for me to reach up and conduct a very brief investigation into my mother's morning routine, which resulted in me pouring the hot cup o' joe all over myself. I had first and second degree burns on my arm and chest, hence the mummy-like appearance in a few childhood photos. I am sure this was a very painful and frightening event for little Evin, so I am grateful that a few years later, I had no idea it had ever happened. Three weeks later, I was all better; neither my body nor mind was scarred by the incident.
Thursday, May 7, 2015
If the speech I gave at the U of M Family Retreat on April 29th (tired of hearing about that yet?) was the "birth" of my future as a person who gives his time and energy to spreading awareness of Cystic Fibrosis and transplant related issues, then the speech below was the "conception." In November, I was asked to speak in front of the Plymouth Canton Educational Park's STEM students, who had collectively chosen Gift of Life Michigan as the recipient for their charity work this year, in my honor. I felt so blessed to be able to speak with such a thoughtful group of teenagers, and doubly so because some of the seniors in the audience had me as a teacher right up until a CF exacerbation in February 2013 took me out of the classroom and eventually landed me on the lung transplant waiting list.
Wednesday, May 6, 2015
During the question and answer session after my speech at the CF Family Retreat, (link to the video of it coming soon, I hope!) one of the audience members suggested I write a book. I told him that I had been told this before, by my parents, my wife, a few friends, and I always felt like my story was "just another story" and very few people would be interested in reading about the life of a random guy they'd never met. I felt like those who suggested I put my life down on paper said it because they knew me personally, and my story had significance for them that it would not have for those who didn't. But my viewpoint on that changed one week ago today. Following the Q & A, several more people told me that writing the book was something I had to do, and one of the CF clinic doctors mentioned that she gives books to newly diagnosed patients, but that none of them are written by people who have Cystic Fibrosis. As it turns out, I am the horse's mouth.
Tuesday, May 5, 2015
During the Gift of Life Michigan Fundraiser that Canton High School held in my honor in April, I went to the school each day to help out. I took balloons and would sit down at a lunch table full of students who didn't know me. I would ask them if they'd ever seen someone blow up a balloon before, and of course they had. What a silly question, right? But then I would ask if they'd ever seen someone blow up a balloon with lungs that they weren't born with. A few times, a shrewd student would answer, "How would I know?" but typically, the students just stared at me, transfixed by both the question and the general strangeness of the situation.
Monday, May 4, 2015
In my speech at the CF Family Retreat, I also mentioned the book I wrote for the "Young Authors" assignment in 4th grade, titled A Day at CF Camp. I'm so glad my ten-year-old self chose to record these details-- I had completely forgotten about some of them. I think it is noteworthy that I included so many specifics about camp, but don't explain what Cystic Fibrosis is whatsoever. The full text and a few photos of my most excellent illustrations follow.
This book is dedicated to all my friends at camp.
Every day at CF camp is very tiring.
You get up, get dressed, brush your teeth, wash your face, and go outside.
Then one of the cooks rings the bell for breakfast.
After that you can do lots of things: go for a run, play frisbee, four square, dodge ball, or volley ball.
Next you eat lunch, but before that you wash up.
After lunch you rest in your bunk until the counselors let you out.
In the afternoon you pair off with your counselor and you can play human knot, memory ball, long jump, boccie ball, or go swimming.
The cooks ring the dinner bell, and then you eat dinner.
After that you get a treatment for a half hour.
Before camp you set back your watch one hour so you go to bed ten o' clock camp time.
On two special nights you go to bed later. On the third night we have a dance and on the last night we have a bonfire.
Sunday, May 3, 2015
In my speech at the CF Family Retreat, I referenced the book I wrote in second grade, I'm Short and Have CF. It provides an excellent glimpse into the perspectives of 8-year-old Evin. The entire text of the story appears below, along with a few photos of some of the more precious illustrations.
Short is not fun. Sometimes I get in people's way. I'm the shortest one in my class, and probably the whole school too!
But I can run fast! It makes me feel good that I can run fast.
It's not my fault that I'm short. I was born that way.
My lungs collapsed and I have Cystic Fibrosis, that's why I'm short.
Every six months I have to go to Detroit to have a check up. I have to take enzymes to grind up my food.
Every night I have a treatment. I sit on my mom or dad. They cup their hands and hit me gently.
Except for having CF, I'm okay. Even though I'm short, I do have friends and that makes me feel good!
Saturday, May 2, 2015
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...
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
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 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
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.”