Pre-Op

Recognizing My Window of Opportunity for Transplantation

The changes were gradual enough not to alarm me. I went from a steady 110 to 118 pounds in less than a year, but always celebrated weight gain. The blue coloring in my lips and fingernails was more pronounced, but I figured I was just paying more attention. Determined to live as normal a life as possible, I conditioned myself to ignore the signals my body sent me.

Originally listed for a heart-lung transplant in 2002, I deactivated when the U.S. Food and Drug Administration approved sildenafil (OK, it’s VIAGRA; make all the jokes you want about my miracle drug) to treat pulmonary hypertension (PH). My pressures dramatically improved, but transplantation remained the backup plan. After another full evaluation and workup in 2015, the team told me I was sick, but not sick enough to earn necessary priority — listing me at a “Status 2” on the heart transplant list (the lungs follow the heart in a heart-lung transplant) would be “purely academic.”

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My mother and me at Stanford for transplant evaluation in 2002.

Though I profess to have learned the true meaning of Christmas long ago, my heart (like that of Dr. Seuss’ Grinch) grew three sizes, compensating for failing lungs and pushing them aside in the process. My heart pounded against the constricting fabric of a dress that had fit just right months before. Instead of resenting my boyfriend who fumbled with the zipper when I needed the dress OFF NOW, I should have wondered why cushy corporate parties six months into my post-grad life were more exhausting than nights spent hiking up and down the steep hills that connect UC Berkeley’s Greek system.

Shouldering a portable oxygen concentrator and a suitcase packed with equal parts clothes, medication, and camera equipment, I boarded a plane to Seattle. Racking up business expenses for my first out-of-state photography gig, I took an Uber from the airport to a cafe. Later, I met up with a friend from college to explore Capitol Hill, eat Thai food, and crash on her couch.

When I met Xio at orientation, I didn’t think our friendship would make it past the awkward incoming freshman stage, or that she would save my life. My classmates and I stared sleepy and green-eyed as she impressed professors by consistently interjecting insightful questions and creatively arranging sliced bell peppers. Xio and I spent most of our time together late at night under pressure, but I never imagined it would prepare us for anything other than surviving future architecture studios.

I woke up coughing, afraid to disturb Xio’s sleep. Under the light, what I had coughed into my hand was bright red, as was the mass I was now coughing up into the toilet bowl. Wheezing blood, I was busy contemplating how unfortunate it was that I was going to die in a bathroom, when I heard her voice. “9-1-1?” Xio asked. I cough-moaned agreement and listened to her calmly give directions to an operator.

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View from ICU room at the University of Washington.

Two ambulance rides and three hospital rooms later, I learned that this event (“massive hemoptysis”) signaled a serious progression of my disease. My doctors said I was lucky to have survived it, and might not survive another event. I believed them.

My pulmonologist rejected my parents’ designs to drive me home, and instead advocated to have me medically transported by Learjet to Stanford, listed for transplant, and prioritized at Status 1B. At age 23, the decision didn’t require debate. My oxygen saturation had dropped as low as 37% and was still hovering below 90% while lying in bed on supplemental oxygen. Without new treatment options to try, I couldn’t wait another few years for improvements to transplantation. I had maxed out. After fighting PH for 16 years with transplantation locked away in savings, I wiped my account.

To say I was lucky would be an understatement. My know-it-all friend knew how to get me the help I needed, and my pulmonologist recognized my window of opportunity. Twenty-eight days after being listed, my donor and surgeons gifted me a healthy heart and lungs that not only reshaped my perspective on life, but also physically reshaped my body, making it possible for me to fit back into that dress.

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Chest x-rays before and after transplant.


Originally published by Pulmonary Hypertension News.

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Pre-Op

Donate Life Month

April is National Donate Life Month, and my birthday month! I am so excited to turn 24, and this milestone is only possible because of my donor’s generosity. I’ve committed myself to promoting organ donor registration all month long through my social media.

I’m writing this having just returned from a six-hour photoshoot at 8pm. The images are being imported into my Lightroom catalog and I will have the energy to begin processing them tonight. I would never have been able to do this before my transplant and I don’t yet have all the words to express the joy and confidence this gives me.

This morning I flipped through the journal I wrote in while I was waiting on the heart-lung transplant list. The following is the last entry in it:

I’m not just waiting–I’m also sick. The story that I’m waiting around until I get a call that will allow my life to begin takes away every last strand of control I had. The reality is that I get out of breath going from my room to the bathroom and back. The reality is that I cannot photograph a wedding. I cannot walk my dog multiple times a day. I do not have the energy to cook and clean and do laundry. The idea is that I’m waiting for a future where I can do all that again. Maybe that future will come, maybe it won’t and maybe it will take an unbearably long time to get here. But there are lots of things I can do and I do not have to wait for that future to start living. Today I am in the present. I have control over what happens today–and I’m not going to spend it twiddling my thumbs and watching the clock.

After this perspective shift I started oil painting and going on occasional outings. But I only waited 17 more days before getting a call offering me my new heart and lungs. I was incredibly lucky. Having lost several friends to Pulmonary Hypertension while they were on the waiting list, I wrote in this journal knowing there was a good chance I would never get my call. There are currently 120,000 people waiting for organ transplants in the United States.

The same day I wrote this journal entry (thank you to my past self for having the good sense to date these things!), the White House hosted a summit announcing the Obama Administration’s call to action to reduce the waiting list for organ transplants. According to their statistics, 95% of Americans support organ donation, but only 50% are registered as donors. Are you registered? Make sure you are by visiting RegisterMe.org, and please talk to your family about your wishes.

My organ donor gave me a future in which I can do more than I ever thought possible. They are remembered and celebrated daily.

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Pre-Op

The Call

I didn’t stress about packing absolutely everything I needed because I believed it would be a dry run. These are never actually rehearsals, but they’re referred to as dry runs after it’s determined that the potential match is not a good one. Almost every transplant patient I knew had had at least one—one friend even entered the Operating Room before they called it off. I figured it was a rite of passage: I would go through the motions today, but I still had a long time to wait. Just 28 days on the list of transplant candidates and they had a match for me? Impossible! My heart was racing too fast for me to think clearly about what I wanted to bring. I shoved a few books and art supplies in a bag, grateful for my parents for handling the backup of medical supplies so I could focus on the important things, like updating Facebook and locating the henna ink. My dad returned from work and my younger sister, Monica, was woken upstairs. Our house was filled with hurried footsteps and phone conversations. Excitement, fear, and confusion reigned. I stood in my newly converted downstairs bedroom—taking the stairs was out of the question this morning so I dictated clothing requests to Monica in a routine we’d cemented into the foundation of our relationship. After 21 years together as Monica, Kathleen, and Chronic Illness, it had become her implied responsibility to get up and walk across the room to retrieve the scissors I wanted from the shelf two feet away from me. Three weeks later I headed up a different set of stairs to retrieve her shoes and wallet in an attempt to restructure our roles around my new health status.

I had imagined this phone call several times a day for the last month. After one too many heart-stopping calls from numbers with the 650 area code (“Ok, Melissa, you’re calling from the Stanford Chest Clinic, but do you have a donor for me? Speak faster so I can breathe again!”), I called my nurse coordinator to ask what sort of an introduction I could expect. She said they would make it clear immediately that this was not your standard appointment-scheduling phone call that I seemed to be getting so many of and patiently talked me through the questions they would ask me. The phone rang at 7:50am and as soon as the first words were out of his mouth, I knew the man on the phone was calling to offer me organs. He rushed through the script, stumbling over some parts. I eagerly confirmed I did not have any cold symptoms, and had not eaten since the night before. I informed him that I was a two hour drive away from the hospital and he told me they would have a bed ready for me at 10am. It went exactly the way my nurse coordinator had described it.

By 8:40 we were in the car—breathless and jittery, each convinced we’d forgotten the most important item on the packing list we never finished making. The drive to Stanford was less than two hours, but it felt like traffic moved slower than ever specifically to heighten my unresolved panic. I was excited, impatient, and afraid. My heart had not stopped pounding since the phone rang. Normally my heart rate hung between 60-80 Beats Per Minute, but on July 30th it was consistently between 100-130 BPM. Once admitted, I leaned back in the bed that would transport me to the OR ten hours later, closed my eyes, breathed steadily, and relaxed. Still the screen read 122 BPM. My heart could not ignore the adrenaline pulsing through me, however much I tried to trick myself into staying calm. Somehow it knew this was our last hurrah together and my heart was giving me every last bit of strength it had left.

I have an insane level of respect for the organs that kept me alive for 23 years, which is part of why this experience has been wrought with grief. Don’t get me wrong—I have railed against my tangled heart and poor excuses for lungs enough times to exhaust my most understanding confidantes. It appeared to me that the entire world had great lungs they took for granted and that it was my fate to watch them squander them, often at my expense. I noticed cigarette smoke more frequently when temperatures dropped. Cold air irritated my tight airways, making it harder to breathe and often triggering asthma. I would shed hot, angry tears as I gulped frigid smoke on my way to class, huffing and puffing up the unrelenting Berkeley hills. No matter how hard I tried to find some divine purpose for my illness, it was impossible for me to reconcile the injustice. My bitterness made me feel alone on a campus of 35,000—and all the more bonded to my deteriorating insides.

I waited in room B201 for ten hours. More and more friends arrived throughout the day: it was a festive occasion. We played card games, listened to music, drew henna tattoos on each other, and laughed a lot. The anticipation electrified us all. Amidst all the excitement, my donor was constantly on my mind. I knew that the hours I spent waiting were some of the worst hours in the lives of my donor’s loved ones. I smiled and celebrated new hope gifted to me by a stranger whose friends and family were simultaneously learning of a loss that will bring grief into their lives forever. I am intent on making use of that generous stranger’s most vital organs. I may never get to know who my donor was. Even if I never meet their family, I know we navigate the same waters. My ship has been rocked by grief more times in my 23 years than in some lifetimes. I know how a rediscovered handwriting sample can take your breath away and how a number on the calendar can spoil an entire week. I know that the pain can be just as strong five years after the initial loss. I will be forever indebted to my donor and their family for choosing to be selfless in a moment of intense suffering. Every breath I take for the rest of my life is only possible because of their gift. My hope is that someday I can share some fragment of the joy that gift has brought me with the wave-beaten voyagers my donor left behind.

I solicited my friends to witness the advance directive I filled out as I waited, and forwarded my mom the informal list of final wishes I had written as a junior in college. It includes important things like what kinds of trees to plant in my honor, instructions for how long to keep my Facebook profile active, and various demands for the party that will be thrown in lieu of a funeral. Waiting outside the doors to the Operating Room with just my parents, I apologized for some of the more outdated references. In the two years since I started planning this, much like my peers do their wedding days, my prized possessions have changed and friendships have evolved, along with my social media passwords. During what could have been our final moments together, my mom and I talked animatedly about where to direct donations in the event of my death. Organizing like this is one of our practiced coping mechanisms: our theory is that once we do everything that needs doing, we can return to a state of denial and escape our worries. I’m not going to pretend it’s incredibly healthy, but it works for us.

The whole experience of being in the operating room was surreal: I waited hours, watching as nurses, their backs turned to me, carefully arranged metallic-sounding instruments. Behind me, my gentle anesthesiologist tended to his assigned tasks, starting up conversations with me from time to time. He let me choose the Pandora station: after a few seconds of intense deliberation I settled on Blind Pilot and was pleased that the only complaints coming from our small group were about his lack of a paid subscription and not my selection. The idea that this might be the last playlist I listened to added a whole new level of pressure to a decision I normally left up to more musically literate friends. I asked for a pen and paper because drawing had lowered my heart rate while I waited upstairs. I sketched the scene before me, channeling my focus into the pen and away from the useless worries welling up around me. I sought images of strength and wisdom, and guardian angels appeared in my agnostic mind like deceased wizards from a connection of simultaneously cast spells. My silly grin went unnoticed as I convened with my wise, witty, and spirited angels: I needed Michelle’s charming practicality, Amelia’s stubborn assuredness, and Sarah’s fiery perseverance. I could feel their presence and hear their voices. I felt lucky to be the patient and have nothing left to do—just lie there and trust my body not to give up. My only concern as the team started the infusion to put me to sleep was for those who waited outside the room. I knew I would have no memory of the hours that would pass slowly for my family and friends. My body has an impressive record of defying odds without my awareness so I embraced unconsciousness with confidence. At that point I had no idea the extent to which my body was working to keep me alive, but two weeks later I would see just how far my organs had been pushed.

A note to my beloved readers: Thank you for following along, sharing my posts and sending encouragement my way. Stay tuned if you are curious about the state of my original heart and lungs when they were studied in Stanford’s Pathology lab. I am still piecing together the full experience of receiving “The Call” and would love to hear stories from your perspectives, if you are inclined to share them.

 

Photos by Monica and Kathleen Sheffer

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