The Garden of Memory

I woke up on the longest day of the year knowing my friend would be taken off life support. After spending the morning rock climbing, I checked my email. “Fwd: THE BEST THING IS TONIGHT.” Chapel of the Chimes, a columbarium in Oakland, hosts an event called The Garden of Memory to celebrate the Summer Solstice. After looking up the word “columbarium,” I agreed to go. Events with people who are comfortable talking about death are my thing. In fact, the first person I recognized at Chapel of the Chimes hosts You’re Going To Die, another great event with people who are comfortable talking (and singing) about death.

Spectators gather in Chapel of the Chimes’ Garden of St. Matthew to listen to Probosci, a collaboration between violinist, Timba Harris, and guitarist, Gyan Riley.

The email promised 75-100 musicians, so my housemate recommended earplugs, but as soon as I passed through the courtyard and into the building, noise turned to music and I was in an environment unlike any I’d seen before. Part–greenhouse, part–library, part–church: my friends and I explored the space, following sounds and getting lost along the way. Oakland’s columbarium was redesigned and expanded in 1928 by the first licensed female architect, Julia Morgan, who attended my alma-mater, UC Berkeley, and L’École des Beaux-Arts in Paris. As an Architecture student, I was taught to set constraints for my projects because more creativity happens within fixed boundaries. Not only guitarists, pianists and violinists were tucked into the vaults: performances included a magnet-controlled water organ, a Theremin, and a parrot serving as lead singer.

Zola drawing crowds and cheers while playing the Theremin.

Stepping around gothic fountains, squeezing single-file up staircases and through archways, we found walls lined with urns, stained glass windows, and bouquets of fake flowers. Solstice is derived from the Latin words Sol (sun) and sistere (to stand still). On the solstice, we filled the stone halls of this columbarium with movement and sound because grief is active and dynamic. It does not sit still. In the same way, memories are not fixed: they can grow and die like plants; stretch and distort like sound.

Memories of my hallucinations in the first weeks of my recovery are still with me. In addition to imagining conversations and visits from friends, somehow the sound of mylar balloons brushing against each other in my hospital room made me think from my fixed position in bed that my dad, sleeping on a cot, was frantically writing in a journal. I keep the memories that aren’t doing any harm, and try to weed out the ones that are. For 17 years I held onto fear and anger from my first cardiac catheterization. With perspective (and therapy), I know that the nurse who was unsuccessfully trying to stop my screaming with Disney’s, Aladdin, playing on a screen to my left, genuinely wanted to help me, and the surgeon stabbing my right leg didn’t want to hurt me, and everyone in the room was just upset as I was that a 6-year-old heart was recording pressure values that solidified a diagnosis of Pulmonary Hypertension. The memory isn’t exactly erased, but reframing it diminishes the trauma.

In May, after three huge doses of steroids (500mg IV Solu-Medrol per day) to treat my rejection, I felt like a lab rat. I had no choice but to accept the chemicals and wait to see what would happen. My mind became a maze with thoughts racing, getting diverted and eventually lost. I filled several notebooks with lists and messages to myself, convinced that writing something down by hand would preserve it in reality. On clearer days, I struggle to make sense of the fragments I managed to record, which include the singular word “ache.” The chemicals made my body sore in a way that Tylenol cannot fix. They wiped out my white blood cells and increased my anxiety. They made me hermetic, afraid to socialize with tears threatening to escape at any moment. The chemicals also cleared my rejection.

Maddie visiting Basil and me in San Francisco, March 2016.

Maddie’s life was fixed to 24 years, but her awareness of the brevity of life made it richer and more dynamic. She chopped all her hair off two years ago and dyed her pixie cut blonde the following year. “Life is too short for a boring haircut,” she reasoned. When a bronchoscopy sent her to the MICU on a ventilator, I was certain she would pull through. Maddie is a fighter. She conquered leukemia, Pulmonary Hypertension (PH), a double-lung transplant, and a single-lung transplant. We met when we were 9 years old and convinced that the best use of our time was riding escalators up and down again and again at the fancy hotels PH Conferences are held in. The stares we got and the laughs we had were certainly worthwhile. Last year, I reflected on her strength as I entered the operating room for my transplant. Maddie’s snapchats and memes about being on Prednisone put a smile on my puffy face during my hardest days after surgery. “I can feel my cheeks jiggle,” she tells me after her first dose of IV Solu-Medrol, a.k.a. Mega-Prednisone. I finished my course the week before and the steroids are starting to affect my mind so “Amazing,” is all I manage to text back. Five weeks later my organ rejection was gone, and so was Maddie.

Among the gifts Maddie left me (including this letter she sent me in 2002 that makes us best friends), was her last text to me: “You gotta take the wins when you can!” Sometimes it’s easier to find bits of light in dark times. Millennial digital photographer that I am, I am still learning how developing happens in a darkroom, but I’m pretty sure it’s a good metaphor for this. The harder my life gets, the more gratitude I have for anything that runs smoothly. I rejoice when I find a space that makes parallel parking particularly easy, or when it only takes one attempt to gain IV access (can’t remember when the last time that was).

The worst and best thing about grief is the growth that happens after the loss. That other lives continue after one ends is both a comfort and a burden, a fact accentuated for transplant recipients with deceased donors. I mourn friends I’ve lost most severely when I’m unable to talk to them about important changes in my life. But the passage of time that brings these changes also brings changes to the grief, and the loss itself can spur positive change. My closest college friendships were borne out of and strengthened by bereavement. My willingness to talk openly about death has made for more meaningful conversations with many people in my life, and lots of cathartic tears. “When grief develops and grows,” hospice chaplain, Kerry Egan, writes in On Living, “it somehow becomes diffused across the memories that surround the loss at the heart of it. It seems less concentrated, and therefore more bearable.” The loss of Maddie still feels concentrated and unbearable, but reflecting on the happy memories we made helps develop my grief. Rock climbing, riding trains, and walking over 3 miles to be a part of filling a columbarium with life, keeps me (and my grief) active.

Cornelius Boots playing a shakuhachi (Japanese bamboo flute).

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All photos © Kathleen Sheffer Photography

Confronting Rejection

When I started becoming more independent after my transplant, I thought it would be funny to try to going on dates coordinated through Tinder while wearing a mask. “You can’t kiss me, and I don’t drink alcohol so I’d rather not meet at a bar, but let’s get some coffee and I’ll only wear a mask for part of the time.” For reasons unrelated to my mask and immunosuppressants, my love life has been fairly bleak lately. I’d like to say I’m single by choice, but I won’t pretend I haven’t gotten hurt. As I am still in a key period of the healing process from surgery, I have focused on avoiding stressful relationships, romantic or otherwise. Following each romantic rejection, I think, “Could be worse – at least it’s not organ rejection!”

Well, Thursday’s bronchial biopsy came back with a diagnosis of Mild Acute Cellular Rejection (Grade A2). Acute cellular rejection, mediated by T lymphocyte recognition of foreign major histocompatibility complexes, commonly occurs in the first year after a heart-lung transplant. Basically this means my immune system is waking up to the fact that we, uh, switched out my heart and lungs for someone else’s and hoped it wouldn’t notice.

It noticed.

Last May my family and I were told I needed to be listed for a heart-lung transplant. The need for a transplant had been one of our greatest fears for sixteen years, but when we finally faced it, we felt a sense of calm. We focused on the actions that needed to be taken, and not on what might go wrong. Well, okay, we are human and definitely wasted our fair share of energy on worrying.

The Pulmonary Fellow I saw on Monday seemed nervous when he told me he wanted to schedule a bronchoscopy because my Pulmonary Function Test (PFT) showed a 7% decline in the numbers they use to evaluate my lung function and screen for infection and rejection. He appeared to be asking if I was willing to have the procedure, to which I responded, “of course!” Bring it on. My team has been conscientious and understanding of how distressing the diagnosis of rejection may be for me. I’m focused on doing whatever needs to be done to get through this. It’s a bump in the road that may slow me down, but challenge breeds creativity, and it was all feeling a little too smooth anyway.

Infection and rejection have been my family’s greatest fears post-transplant. I caught Coronavirus (common cold) at the end of February and treated the infection with rest, fluids, some prophylactic antibiotics and was still able to go hiking! Now we get to see how I conquer the first round of our second fear, rejection. I say first round because, though this is the first time I have been diagnosed with rejection post-transplant, it probably won’t be the last time.

So now I get some huge doses of steroids and we wait and see what happens. I had my first of three outpatient infusions of 500 mg of Solu-Medrol (basically mega-Prednisone) this afternoon and the only change so far is that things are flying out of my hands more frequently – my hands are even shakier today than they were yesterday on 10 mg of Prednisone. In anticipation of side-effects including insomnia and mood swings, I got plenty of sleep last night and finished writing my Mother’s Day card while I am still a relatively loving daughter.

I can’t help but notice the similarities between getting an infusion and handling a stick insect. (Photo taken by David Weaver, lighting and processing by me)

Cheesy quote time.

“He who has a why to live, can bear almost any how.” – Friedrich Nietzsche

Last summer, high doses of steroids had me convinced that life was not worth living. But I have lived so fully this past year as a result of the challenges and causes for celebration that my transplant brought. I now have mechanisms in place to remind me that pain is temporary and I can move past suffering.

For my infusion today, I proudly wore the T-shirt from yesterday’s Touchstone Climbing Series competition at Mission Cliffs. I speed-walked the 1.6 miles to the gym about an hour after the results of my biopsy came in. My nurse coordinator was probably curious about the noise coming from the DJ and crowds in the background while she told me over the phone to check in at Admitting before going to the Infusion Center, but she didn’t say anything.

I won’t recommend going rock-climbing with a healing sternum, and my last discussion with a doctor ended with him advising I avoid upper-body exercises for the first year after surgery. But indoor rock climbing makes me feel strong and happy. It’s something many of my friends enjoy and I love incorporating socializing with exercise because I’m all about multitasking. The gym is an environment where I can be heard through my mask (loud bars are tough) and instead of giving me dirty looks, other climbers ask me where I got my mask, assuming I am wearing it to avoid the chalk in the air or to train for high-altitude! I take safety seriously: my climbing partners include EMT’s, transplant and ICU nurses. I wear a filter mask the whole time, know my limits and am careful to avoid climbs with portions that would be dangerous to fall from. With my climbing harness double-backed, my belayer’s carabiner locked, Band-Aid’s and Neosporin in my bag, and constant awareness of my own mortality, “climbing on” is a risk worth taking – for ME.

Climbing is just one of my “why’s” to live – most of the other “why’s” are proper nouns, not verbs. I’m entering what may be a painful and pessimistic time knowing I will survive it and return to a new normal, living life with the people who make it full.

Now I’m going to stuff myself with some potassium-rich dinner and hope I don’t consume every last bit of chocolate in my house – apparently Solu-Medrol can increase my blood sugar, deplete my potassium, and make me a “Cookie Monster” (technical term) with intense cravings.

How Donor Registration Helps Me

Now that National Donate Life Month has ended, I realize I did not keep my commitment to posting daily to promote organ donation. This was in part because I realized that most of my friends are already registered organ donors, and if any unregistered followers still haven’t taken the 32 seconds to register online (I just redid mine and timed it), 30 aggressive posts probably won’t make the difference. The other part was that I got busy doing things like photographing a two-time heart transplant survivor, sending a card to the family of my organ donor, getting tests done at Stanford, celebrating my birthday, having a wisdom tooth removed, and collecting jumping spiders. In other words, I’ve been busy living the life that was donated to me.

While I was waiting on the heart-lung transplant list, a few of my friends let me know that they registered to be organ donors because of me. Now that I am lucky enough to be a recipient, I continue to promote organ donor registration for a number of reasons. I’m going to try to focus this blog post on the rational and self-interested reasons I do so, rather than obsess over how helpless it makes me feel to know that innumerable vibrant and deserving people won’t get the second chance I did, and will die waiting for a match.

My theory is that more money and interest will go towards studying transplantation if more people register to be organ donors. More research is imperative to my long-term survival. In the 13 years between my first and second evaluations, tremendous progress was made in terms of the way patients are treated after transplants, and how surgeons perform the operations. Prograf, one of three key immunosuppressive medications I take twice a day, was approved for use just 20 years ago. The Organ Procurement and Transplantation Network (OPTN) recorded only 1,202 heart-lung transplants, 0.17% of total transplants performed in the United States since 1988.

The data set I’m compared to is so small that most trends have little statistical significance. This became a problem when my severe gastroparesis persisted six months after surgery. Gastroparesis affects the muscles in the stomach, causing it to empty slowly. It’s a common complication from nerve damage during lung transplantation and usually resolves itself. Two rounds of endoscopic botox injections and probably a hundred (low fiber) original PowerBars later, I’d had only marginal improvement. Quoting the latest nebulous data, my doctor didn’t expect any significant change after the first six months. He recommended a Pyloroplasty, warning this complication leads to chronic rejection (the kind where my body irreversibly attacks my transplanted organs)–eek!

Psyching myself up for a new scar, I met with a surgeon in March who explained that the surgical option would only treat the symptoms of gastroparesis, and comes with a 3% risk that I would end up on a feeding tube indefinitely. He was hesitant to operate on me, noting that I am hiking mountains instead of being admitted to emergency rooms with respiratory infections from silent aspiration. I bounced out of his office, hopeful that I might delay surgery long enough for my stomach delay to recover on its own.

Failing to satisfy my parents and physicians with promises to chew well and eat small meals, last month I had my fourth gastric emptying study at Stanford’s Nuclear Medicine and Molecular Imaging clinic. The five-hour exam begins bright and early with radioactively-labeled Egg Beaters, toast, jam and the smallest paper cup of water a fast-breaking tech can find. A one-minute scan monitors the radioactivity in the stomach at hourly intervals. The decrease in radioactivity over time reflects the rate at which food empties from the stomach. My study in April revealed that my stomach now empties at a whopping 58% of the normal rate, a heartening (puns always intended) improvement from 15% recorded in July and 19% in November. 

At this point, I won’t bore you with details of the myriad issues I’ve had because my transplant team compared me to a population instead of seeing me as an individual. In the case of my gastroparesis, I was lucky to meet with a surgeon who gave me his email address and direct line instead of a slot in his operating room schedule, allowing time for my nerves to heal at their own rate. 

There is still so much to learn and that lack of certainty is stressful for the perfectionist in me who wants each step rendered in tidy capital letters with (Pilot G2 Ultra Fine) black ink on white paper. No need to study the image below in detail or analyze what it says about me that I saved my personal record of input, output, suppositories, enemas and bowel movements from days before hospital discharge, then photographed it 288 days later and published it online. 

Luckily (or unluckily for my neglected blog, jigsaw puzzles, and oil paintings), now that I am feeling healthy, I can release some of my frustration with uncertainty by marching full speed ahead of my mom to greet fellow hikers with my tear-stained face and histrionic outbursts of “nobody knows anything!”

Being one of 18 heart-lung transplant recipients in the U.S. last year means that my individual journey is statistically significant and will shape that of other recipients. Sure, it’s exhilarating to be special (my preferred term for complex), but that’s a lot of pressure, and I’d like to be a smaller portion of the data set. My mother, wiser and one-eighth of an inch shorter than I am (ignore her claims to the contrary), insists on recognizing the hope that comes with knowing future organ transplant recipients will help me as much as previous recipients have.

So that future recipients get their second chance at life, and that medical advancements continue to improve our long-term care, I need your help in promoting donor registration. Not only does one’s family make the final decision, my research suggests it’s actually pretty difficult to die in a way that makes organ donation possible. Here’s a good place to start if you, too, are looking for some light reading on brain death. Even if you never become an organ donor, registering signals to physicians and patients like me that you support the work we are doing to increase the survival statistics and quality of life of transplant recipients.

Here it is again: registerme.org

Volume Boost

UPDATE 4/17/2020: You can now listen to the story I told at The Moth on their podcast at The Moth | The Moment of Truth.

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In January my name was drawn at a live storytelling event hosted by The Moth. I spoke about the hours leading up to my heart-lung transplant and when I came off stage, my friend teased me for leaving the audience confused about my splinted hand. At that point it wasn’t story-worthy.

Days after breaking my fourth metacarpal I started to notice that my heart and lungs feel like, well, my heart and lungs. With as much trust as I have in the power of the mind, I developed a fear that my risk of rejection would increase if I failed to believe strongly enough that these organs are mine. Despite conscious efforts to convince myself of synchronicity, immediately after my operation I had an overwhelming sensation of segmentation. Even after my scars healed and swelling decreased, the soreness in my chest persisted. Recently I’ve found I can breathe more deeply without being limited by pain. The amount of air I can exhale in a single breath has increased dramatically (and I have beautiful numbers from the Pulmonary Function Lab to prove it)!

Now my heart and lungs respond how I expect them to when I exert myself. Or rather, I’ve learned what to expect. Learning how my body works—as an infant might, but instead at my advanced age of 23—continues to be surreal. I am gaining trust in my new abilities, as well as my mood. That’s why I put my name in a “hat” (folder) at The Moth, stood up when called, told a story on stage, and only shook for 5 minutes after I finished.

When public speaking with Pulmonary Hypertension, adrenaline overtook linear thought. Now I get plenty of oxygen to my brain and don’t find myself gasping for breath at the end of a loquacious sentence. I’ll admit I still tend to lose my train of thought when I’m speaking, but not to the extreme that leaves me standing silent in front of an audience for a full agonizing minute…like that one time in elementary school. Not that it was the least bit memorable. I’ve totally moved past that trauma.

Accustomed to a life replete with emergencies that put everything else on hold, I assumed I would have to cancel my flight to Seattle when I broke my hand. Instead, I kept my plans and enjoyed a transformative trip. I was able to go hiking with the friends who last saw me tethered to continuous oxygen and IV therapy at University of Washington Medical Center, and even addressed 75 Valentines by (left) hand while I was there!

I can overcome obstacles more easily now that I am not pushing myself to my absolute limits just to get through a single day with Pulmonary Hypertension. Tripping on a sandal may not be the epic drama I envisioned for my first broken bone (not counting my sternum, which surgeons have broken twice on my behalf), but with one limb out of commission, my body revealed its strength as a unit. Appreciation for this strength overshadowed my frustration with my injury and its banal explanation.

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This morning Facebook reminded me of the last time I gave a speech with PH. I used to dismiss comments on my purple lips, preferring to hide my illness. Now photos like this leave me in awe of the remarkable effects my transplant has had in such a short time. I’m pictured below with some of the wonderful people who support me rain or shine, Pulmonary Hypertension or immunosuppression.

Team Kathleen at PHA’s O2 Breathe Walk – March 13, 2016

 

 

Fall Risk

Providers regularly ask whether I’ve fallen in the last 30 days. Last year a nurse insisted that everyone on the floor was considered a fall risk, handing me bright yellow slipper socks with tread on both sides and wrapping a band of the same color around my wrist. Since then my dismissal of this particular question has become increasingly emphatic. I take pride in my ability to extricate myself from lengths of oxygen tubing more gracefully than the average geriatric patient.

Snapchat is a great coping mechanism…definitely don’t miss those dark purple lips!

Having procrastinated on blogging, today I can affirm I have not fallen in the last 30 days. It has been 47 days since my last fall, and oxygen tubing is inculpable. I tripped on uneven concrete walking in flip-flops intended to make changing into my indoor rock climbing shoes less of a hassle. I fractured a bone in my right palm and had to wear a splint.

I felt particularly unfocused in the weeks leading up to my fall (probably a contributing factor in retrospect). Performing tasks with one hand instead of two slowed me down and made me more mindful. My morning breakfast routine involves a bowl, a box of Cheerios, a banana, a knife, a spoon, and a quart of milk. I had to retrieve each item individually and arrange them on my dining room table for proper combination.

While I’ve experienced astounding benefits from getting my body moving early and often, I’m finding it equally important to make time for stillness. Prednisone makes my hands shake, increases my anxiety and gives me bursts of manic energy. Unwilling to stop moving my feet, even with a camera in hand, I missed opportunities to capture beauty—hours glued to Adobe Lightroom revealed shots marred by motion blur, compositions one permutation away from success. Photographer Minor White famously urges,

When you approach something to photograph it, first be still with yourself until the object of your attention affirms your presence. Then don’t leave until you have captured its essence.

Since I normally swing my camera body around in my right hand, I thought I’d have to stop taking photos entirely while my hand was splinted. Instead, I used my left hand to hold the camera and two right-hand fingers for pressing buttons and turning dials. Each shot took time and effort, forcing me to pay attention to what I included in the frame.

During a portrait session, I strive to make my client feel comfortable with me and my camera. A lot of people, myself included, are intimidated by a giant lens pointed straight at them. The moment I know I am being recorded, my face and limbs stop behaving naturally. If I can get my subject to relax and forget about the camera for a moment, I can take a photo that captures genuine emotions. In order for them to be calm in front of my lens, I need to be calm behind it.

The factors that make me impatient in the aftermath of my operation are not all chemical. Long-term goal setting has always been tenuous in my chronically ill state. I’m struggling to convince myself that making the most of my second chance at life does not mean being in the greatest number of places in the shortest amount of time possible. While I don’t want to lose my reverence for the gift of life, I want to find stability and allow for relaxation. I do not have to accomplish everything today—just some of the things. The challenge is living every day like it’s my last without being completely panicked that it actually is my last.

 

Always an Adventure

We arrived in Sedona a day late. On Tuesday, my dad and I picked up a rental car and headed south to Phoenix, in direct opposition of our planned itinerary. Stanford’s Lung Transplant Team wants me to report any abnormal symptoms without making my own judgments—a fact my mom reminded me of when I tried to blame a hypoallergenic dog for my itchy eyes, stuffy nose and raspy voice. So I called them, and they advised that I go to an ER at a facility that does lots of lung transplants. Driving 50 minutes out of the way to spend six hours in a hospital gown was not what I pictured for this family vacation, but I could hardly complain, especially when all the tests came back clear.

Every day I think about my donor. I fought back tears as I dressed for our Christmas Day hike. The intensity of my joy to be alive to spend this holiday with my family is probably a good indication of how intense his or her family’s grief is right now. For me, this trip is about honoring the gift I was given. I want to use my second shot at life to do activities and see beauty I wasn’t able to before. But honoring the gift means protecting it, so before I could take my new heart and lungs to Sedona, I had to make sure I hadn’t picked up a nasty virus that might attack them.

The first question I was asked was whether I was carrying any weapons. I knew right away that this would be an interesting experience. If you have spent any time in an ER, you have probably overheard some quality conversations. My favorite, relayed by my dad, went as follows:

Nurse: How much have you had to drink?
Patient: Plenty.
Nurse: How much is plenty?
Patient: Beer and vodka.
Nurse: How much beer and vodka?
Patient: Not enough.

I was happy to be a drama-free patient for once. My dad was scolded for silencing an alarm on my monitor, but our stay was otherwise uneventful.

The familiar feeling of guilt surfaced when we checked into our charming motel a day late and selected two Sedona hikes instead of three. My family constantly makes sacrifices for my health and this trip is no different. My compromised immune system dictates which restaurants we eat at—my mom checks local health department ratings and I scout out what I’ve dubbed “loner tables,” where I can remove my mask without fear of being coughed or sneezed on by other diners.

The inconvenience of an ER visit and a few necessary precautions melted away when I was able to complete a 7-mile hike with my family—at elevation, no less. The four of us are acutely aware that our vacation was made possible by the generosity of others—friends who eased the financial burden of my transplant and my donor whose heart and lungs helped me do the longest hike of my life to date and have the energy to stay up late typing this.

I believe my family’s accustomed proximity to death makes us especially empathetic to my donor family’s grief. In the past few years we have lost a bewildering number of friends—to chronic illness, accidents, suicide, cancer, and so on. My sister and I have been greatly influenced by our dad’s work as a nurse and clinical manager for Hospice and our mom’s loss of both her parents when she was younger than I am.

Just before my dad started plugging my blog to a friendly group of hikers we met at the end of the trail, my mom tearfully explained to them the magnitude of my accomplishment and the paradox of the tragedy that made it possible. I began stress-eating crackers and tuna from embarrassment. Even though it mostly goes unspoken, my family’s most joyful moments are accompanied by a sense of sadness knowing every day I spend with my new heart and lungs is another day my donor family spends without their loved one. We welcome the reminder to honor the gifts we have been given—not just my gifted organs and new abilities, but also the gifts of togetherness, natural splendor, time off work and school, safety, friendship, love, rainbows, unicorns, and so on.

Since my last post I have stopped taking a medication that was intended to counteract steroid psychosis. I was scared to go off it. I often make jokes about the studies linking the steroid I take with homicide so my roommate was scared too. I survived the titration, with only a couple nights of insomnia, and now I feel much more energetic and clear-headed. My roommate survived as well. This medication change seems to have stabilized my mood swings, making me more confident in my ability to make plans and have coherent conversations. Having fewer chemicals in my body has restored some of my trust in my own emotions. I am ecstatic to simultaneously ring in the New Year and six months with new organs. That might have something to due with the fact that I can take fewer steroids after the six-month mark, which happens to be January 1^st. 2016 has been one hell of a ride, but I wouldn’t trade it for anything. Now I’m off to the Grand Canyon to close it out!

A Day in the Life

It’s 2pm and I’m curled up on the couch with my dog, Basil, trying to wait it out. “It’s not real. It’s not real. It’s not real,” I type over and over again in a note on my phone. I wish I were being productive. My head hurts and I can’t focus on words on a page. Nothing interests me. I have no motivation. Organizing anything is impossible. If I am able to respond to a friend, it’s only to say that I will have to respond later.

“Why is this happening to me?” I type into the same note. I don’t want to live like this. This is not who I want to be. What if this is who I am? What if it will always be like this? No one will ever like the person I am right now. I need to sit here and hide from the world. I should ask someone to do something with me so I can get out of my own head, but I don’t want to see or talk to anyone. I don’t want them to see me in this state and I know I will be mean and nothing they can say will make it better.

I put on a TV show to distract myself. It’s not enough to keep the anxiety at bay so I also play Tetris on my phone, but I’m still sobbing through the commercials. I wonder if this will ever end. I don’t want to live like this.

I rock back and forth repeating, “It’s not real” aloud, which only makes me feel more insane and sob harder. I try telling myself that this will pass. My thoughts are drug-induced and not my own. But I question that assertion—maybe this is really who I am. Maybe it will never go away. I decide that no one will ever like the person I am right now and I worry that maybe I am that person at my core. Why can’t I function and contribute to society? I start believing this life is not worth the effort.

My phone alarms at 4pm and I get off the couch to take pills and eat a snack. I make use of inertia and force myself out the door to take Basil on a walk. I feel miserable. Everything hurts. I want to turn back, but I keep going. I am angry and I hate all humans. I wish I could move somewhere remote and live alone with Basil and never talk to or see anyone. I decide that for now, I will just spend all my days going on walks alone. “I will get through this by myself,” I think, fully aware of how dependent I am on the support of others. I start walking faster.

“This feels pretty good, actually.” I look around and realize I no longer recognize where I am. I walked further in this direction than I ever have before. I’m seeing a view of the city I’ve never seen before. “Breathing can be fun,” I tease, referencing the inscription on a hat my friend gave me.

The hat-giving friend picks me up at 5:45pm to take me to the climbing gym. She already knows it’s been a tough day so I confide in her. Talking helps. Things start making sense in my head. I ace my second belay test and I feel like I am climbing stronger than ever before. My confidence soars.

I take the last medications of the day at 9pm. It feels like an enormous accomplishment so I throw my fists in the air and shout “freedom,” interrupting my friend who is trying to tell me about her life. Oops.

I work my way through the crowded room as quickly as possible, pausing when I see someone I know so I can hug them and shout a few words through the mask. “So good to see you!” “I’m doing great. How are you?” “It’s so crowded! I hope we can catch up sometime when you can hear me.” I keep moving. People I’ve never met find a way to ask about my mask. “Are you the Grinch here to steal Christmas?” “Excuse me, can I ask you a random question?” I try to answer efficiently, but for some reason they continue asking questions, even though it’s impossible to carry on a conversation over the loud music. I realize I’ve been at the party way longer than my 20-minute goal. Time to go, I think, but then I see another person I want to say hello to.

Finally home, I bounce around the house, shouting and laughing at my friend who is already receiving texts from a cute guy we met at the party. It turns out that the manic side effects of Prednisone make me the ultimate wingwoman. I get in bed feeling fulfilled and ready to do it all again tomorrow.

As the highs get higher, the lows get lower. Because I know what GOOD feels like, feeling BAD is all the more tragic—even when I’m feeling GOOD, memories of past BAD can make me mournful. I am developing a routine and it’s easier when I am expecting it to hit, but the anticipation of future BAD can make me anxious.

Every day feels like a race against the poison. I know I will become irritable and mean, but I can’t seem to prevent it. I still burst into tears and snap at people I love. I hate not being able to control my emotions and I find it frustrating and heartbreaking to know that so much of it is chemical.

When there has been more time since taking the toxic drugs, I feel good and positive and clear-headed and happy. I know that the person I am in the middle of the day, when I am the most medicated, is not the real me. I jumble my words and can’t seem to communicate what I intend to. I am quiet, shaky, forgetful and confused. I get overwhelmed and have to leave events that I would normally be enjoying.

I will be taking less of the toxic drugs after January 1^st and even less after July 1^st. So there is hope for the future, but it’s over 4,000 hours away and I am not totally sure how I am going to get through this one. Send hugs and funny videos!

Thanksgiving

I can’t fathom anyone in the world ever having more to be thankful for than I have this year. No offense, but I’ve got dibs on Thanksgiving 2016. I’m pretty sure that’s how these holidays work.

How can I thank each nurse, doctor, surgeon, social worker, family member, friend and stranger who made it possible for me to wake up this morning? The list of things I’m grateful for is quite literally endless.

I gave it a shot, though, and began filling a notebook with things I’m grateful for. Alongside the huge, miraculous, and unassuming items like “organs” and “financial support” were lots of little items, scrawled in the same handwriting. These are just a few of the little things that make me smile: quick showers with no bandage changes, loads of clean laundry with no dizziness from carrying it upstairs, suitcases without IV supplies, comfortable sports bras, pasteurized soft cheeses from Cowgirl Creamery, the purple and green quilt draped over my bed, a particularly special bag of LA-roasted Blue Bottle coffee, transplant pickup lines, my first belay test tag, and power bars.

In listing things that make me smile, I realized that I am most thankful for the ability to smile. Last month a nurse gave me some Lidocaine liquid to swallow before a procedure. Watching my face as I chugged the viscous medication, she started to explain how much better the rest of the process would be because of it. I turned to my mom with a look of utter disgust. Unable to maintain her sympathetic composure, she burst into laughter and I immediately joined in. Another nurse peeked around the curtain and asked to have some of whatever we were drinking. I would have happily obliged, had I not already polished off the Lidocaine. I was still giggling when they took me back.

I owe my ability to smile and laugh through struggle to the people who laugh with me. Sometimes having someone to swap NSFW scar selfies with can make all the difference.

This Thanksgiving I get to go to “Slippery Acres,” a property that has been in my family for three generations. We have spent each of the last eight Thanksgivings there and have established some of my favorite family traditions around the holiday. Things will be a little different this year. For the first time ever I will hike up the driveway between our cabin and the main road without having to stop to catch my breath. We will not be bringing a 100-pound cylinder of liquid oxygen, nor will we be running the generator for nebulizer treatments. We will be laughing (new lungs makes that easier too) and celebrating being together. And we will be thinking of all the people who made this celebration possible.

In my 23^rd year I experienced a dependence on others that rivaled my experience as an infant. I made it through and I am slowly regaining my independence, but each and every thing I do now is only possible because of the assistance others have given me. Keeping me alive in 2016 was a shared effort. Now my success can be shared. I see it giving hope to other patients and bringing joy to my loved ones. As my family celebrates being together around our table this year, we know my donor’s family has an empty seat at theirs. All this leaves me with an immense responsibility to make use of the heart and lungs I was given. So I’m going to stop making lists and get back to doing that. Happy Thanksgiving!

 

P.S. “Blog readers” is also in the notebook. Thank you for reading!

 

Inside Acceptance

The room grew even more disproportionately large as my radiant symbols of support—mother, father, sister and family friend—let the door close behind them. I raised my eyebrows innocently, hoping that pulling my lips toward my cheeks would reassure the social worker I had nothing to hide. Now she had me alone with no family to augment or smooth over my answers. We sat across from each other at a table on an elevated platform skirted by individual chairs arranged dejectedly in what must have once been an intentional formation. What could be more comforting than the intimate setting of a stale lecture room? I waited for the questions that would indubitably reveal evidence disqualifying me from a coveted spot on the heart-lung transplant list. Our united front fractured, I would surely spoil all that my care team had worked for in the three-day evaluation period.

To my surprise, my anti-depressant prescription and weekly therapy sessions did not set off any buzzers. Instead of opening a trap door under my feet, the social worker gave me a routine referral to a transplant psychiatrist. With no questions remaining, she advised that I ruminate on what it would mean to have someone else’s organs inside me. Then she let me leave, victorious, to greet my fellow contestants.

This social worker was concerned with how new organs would affect me emotionally? “Big deal,” I scoffed, and ignored her. “If I ever get a transplant, I’ll have plenty of more pressing issues to distract me from any existential crisis about my insides.” Three months post-transplant, and after dozens of existential crises managed to prevail over pressing issues galore, I’ll admit that we were both right.

I wrote this in the ICU:

I feel invaded by cocky, perfect organs that the rest of my body can’t make sense of. I don’t know how to use them to their full potential, nor do I feel worthy to do so—I’m scared my formerly sick body will infect and tarnish this newfangled heart and lungs.

Though I now feel bonded to my cocky, perfect organs (and my formerly sick body is becoming increasingly cocky itself), I have not fully accepted the loss of my old organs and pre-transplant life.

Nineteen days after my operation, hospitalized with the last stubborn chest tube still draining, I had the opportunity to visit the aptly named Gross Room in Stanford’s pathology lab. Because I donated my original heart and lungs (the ones pulled out of my body before the cocky ones moved in) to the lab, the researchers offered to show them to me when they were done with them. I could even bring a photographer to document the visit.

If you prefer to read this post without the interruption of images of preserved organ remains, please CLICK HERE.

Nervous excitement mixing with Prednisone shakiness, I squeezed my sister’s hand for stability as we waited to enter the Gross Room. My family put aside worries that had plagued us throughout the day, determined to honor the hardworking heart and lungs that took me as far as they could, an assertion that would be solidified moments later.

A metal tray covered in green linen separated me from the young pathologist assigned to introduce my newly outside insides. I looked at him expectantly, wondering what he was waiting for. “That cloth isn’t fooling anyone,” I thought. It all seemed a bit overdone. The series of hallways and doors we were guided through had been enough of a grand reveal for me. Judging by the facial expressions Nick captured when the pathologist finally lifted it, the covering had been appropriate.

Three tidy piles rested before me. An apparently medically unremarkable layer of bright yellow fat encased what was left of my hardworking heart. Beside that were unequal conglomerates of gray lung tissue. I was pleased to see they were not the disturbing black color I had prepared for. Contrary to the cute analogies in my Biology textbooks, they were decidedly dissimilar to sponges. The damage done by 23 years of Pulmonary Arterial Hypertension was refreshingly clear.

Chunks of abnormally thick heart wall fell back onto the cloth as I tried to piece together the mutilated remains into something resembling a human heart. “You’ve heard the words Pulmonary Hypertension,” the pathologist correctly presumed. Adrenaline coursing through my veins, I hardly had time to complete a full eye roll before demanding he point out physical evidence of the Senning procedure I had at birth to correct Transposition of the Great Arteries.

“I’m gonna have a hard time with this, to be honest,” the underprepared pathologist hastily confessed. My mask concealed my disappointment: this wasn’t exactly the psyched-about-transposition expert I’d hoped for. I was forced to pardon his inability to locate the surgical intervention upon learning that the atria (where the intervention was made) were not included in the wreckage I was given to view. That meant that the sections I held—one in each gloved hand as if I were double-fisting Grande Caffè Lattes—constituted only 60% of what used to be my tangled heart. My heart was massive. The calcium and fibrin deposits we saw in my butchered lung tissue drove home the message: my cocky, perfect organs had not come a moment too soon.

Not content with photographs as my only souvenir of the vital organs I had grown up with—and apparently not content with how insane I already sounded—I began a quest to find a mortuary that would cremate the remains from the pathology lab. Sitting at the dining room table in our small apartment, I called every funeral home in a ten-mile radius. I wish I could share the reactions I got, but I only left voicemails, and only one was returned.

My mom and I did our best not to giggle as I signed forms reserved for family members of the deceased. She handed her credit card to the empathetic mortuary worker, ready to pay to have the remains picked up from Stanford and cremated. But after the card was run, a call from the crematorium unearthed the insurmountable obstacle on my quest. I wasn’t able to find out if the acceptance I sought could come in an urn: my hardworking heart and lungs were now medical waste. This classification requires the crematorium to incinerate the remains at temperatures so high I might not even be left with any trace of the metal tray they went in on. Nope, not paying $200 for tray remnants. So we left the mortuary with a receipt from a cancelled charge and a story to tell the proverbial grandkids.

There is a reason you cannot be put on the transplant list without proof of a solid network of caregivers. This is hard work. My loyal support team has dried my tears and wiped my butt—sometimes with the same wad of toilet paper, but always in that order. They have stomached the sights of chest tubes, groin bruises, and embalmed organ scraps. Most miraculously of all, my caregivers have always returned to my side after I scream at them to leave it. They joined me on my quest to preserve the organs removed from my body and humor my alarmingly intense desire to commemorate my original heart and lungs. One friend gave me an art piece in place of a crematory vessel—the most beautiful hunk of iron with my birth date and surgery date carved into it; another reminded me of the copies of old chest x-rays hoarded in a keepsake box in my closet. Their encouragement keeps me hopeful for a time when the existential crises about my insides will come further apart.

Said existential crises have been less about having someone else’s heart and lungs inside me, as the social worker suggested, than about having lost my own. Attempting to accept the loss of my organs and pre-transplant life is like hitting a piñata. I’m putting the force of my unresolved angst into each stroke, trying to break through to the core of all that has changed. Most of the time the piñata is pulled just out of reach. I made contact the day I visited my organs—some candy flew out. But I wasn’t satisfied so I swung again with the goal of cremation. I don’t think I’ll ever get through and find every bit of acceptance I’m looking for. It is easier to keep swinging knowing that—in the same way they stuffed a colorful cardboard llama for my ninth birthday party—my friends and family will keep filling my life with morsels of hope.

All photographs by Nick Otto: nickotto.net

Unpacking

Somewhere in the 28 days between being listed for a heart-lung transplant and receiving one, I decided I would write a book. Something to keep me busy during what I assumed would be a year of loafing around my parents’ house on 3 liters of oxygen. I bought four novels I determined were relevant to my education as an author-to-be: Pat Conroy’s The Great Santini (fighter pilots and autobiographical fiction? Sold.); Girl, Interrupted by Susanna Kaysen; Sylvia Plath’s The Bell Jar; and Anatomy of an Illness by Norman Cousins. I finished the first and lost the other three. I spend a portion of each day furtively searching for these books. My mom laughs at me when she catches me staring at our bookshelf in vain, pouring over the rows of books from my childhood once more. I imagine they were lost in some transition from one hospital room to another, or from a car to a friend’s house.

I had hoped to blog about these books triumphantly upon finding them—perhaps as a device to talk about closure. But I haven’t found them and maybe I never will. Still, every time I come across an unpacked bag, I feel my heart rate increase with the fleeting expectation that it will contain the books, the words and the strength I need to make sense of this new life.

Earlier this month a 25% decrease in my Prednisone dose sent me spiraling back to a bitter and lonely state. My pain and confusion increased. I noticed myself losing track of chunks of time and joked that it was a good thing I had my dog, Basil, to ground me (her tiny legs keep her very low to the ground). I took her on walks around the neighborhood—to keep moving and have less time to say mean things to my mom—knowing she would tug me toward home if I spaced out for too long. I wanted to eat everything in the house. Mostly I craved junk food, but there was not much to be found, so I settled for a banana and then chips and salsa and then a smoothie and then pieces of dark chocolate and then a baked yam.

Thank you to my friends who told me to shut up when I compared myself to a certain gorilla whose life was taken far too soon, and insisted I wear the cute dress that didn’t do the best job of hiding the increasingly pronounced steroid-induced dark fuzz covering my body. This should be the least of my worries, but I’m startled every time I look in the mirror and see a puffy face, growing sideburns, and spots of acne—all side-effects of long-term use of Prednisone, a medication I will be on for the rest of my life. Most of the time it’s fine—I can rock the squirrel look just like I rocked an IV pump and oxygen cannula. I mean, how can I complain about a hairy neck when I’m rubbing sunscreen into it on my way to hike up a mountain? Oh, I find a way.

I’m distressed by how different my reality is from the one I see other people living in. Now that I am home, I feel expected to assimilate quickly. On June 30^th time began moving at a non-standard rate for me. In three months, my world has changed. Communicating is hard. I keep trying to find the words to explain all that came with this new heart and lungs: new perspectives, concerns, inside jokes and body hair. I lost parts of my identity in the transition, along with the missing books that continue to haunt me.

Back in Santa Rosa I have been doing a lot of organizing. It started with the heap of boxes and bags we unloaded in our living room. We had to unpack post-transplant apartment life along with bags from University of Washington and Stanford hospitalizations. Adding to my confusion were crates of clothes dating back to high school that were moved to my newly converted first-floor bedroom. And then there were boxes and cabinet drawers filled with obsolete medical supplies. As I unpack the relics of my old life, sorting them into piles to keep, give away or throw out, I hope you will join me in the process. I hope you will recognize all that has changed for me in my chubby cheeks, unpredictable calendar of appointments, and trash cans brimming with my old feckless medications to make room for eighteen new prescriptions. I am not going back to normal. My life is different now, and that’s okay. Thank you for giving me time to search for the words to communicate the changes. And if anyone finds my Clipper Card…still searching for that too.