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.
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