Pre-Op

5 Things I Wish I Knew Before My Transplant

Knowing transplant was my plan when all else failed, I lacked curiosity to gather information before making a decision. I focused on survival: more information only increased my anxiety. During my training class, I scribbled in a sketchbook and relied on humor to gloss over the enormity of what I was facing. I still don’t wish I had known that my transplant would come with unanticipated and persistent complications, or that it would involve more physical pain than I had ever experienced before. I could not prepare for those aspects, and knowing they were coming would only have drained my energy to fight them.

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Some notes I took during transplant training. “Grapefruit sucks” comment courtesy of my friend, Max. (Photo by Kathleen Sheffer)

Friends who are looking ahead to a possible transplant in their future often ask me for advice to prepare. With that in mind, I’ve listed a few things I believe I would have benefitted from knowing before my transplant:

1. Transplant comes with permanent dietary restrictions.

When I had pulmonary hypertension, I did not appreciate that I could eat anything I wanted (probably because I rarely wanted to eat anything at all). I no longer battle nausea or struggle to maintain a healthy weight, but chronic immunosuppression does come with restrictions. Grapefruit interferes with immunosuppressants (and many other medications), but that was easy to give up since I don’t regularly encounter grapefruit in restaurants or friend’s homes. Not until after my surgery did I learn that all meats must be hot within an hour of consumption. That means no sushi. No cold cuts. Ever again. Had I known this before, I would have found a nice spot to park my oxygen concentrator and started pigging out on spicy tuna rolls and deli sandwiches.

2. Chest tube scars heal.

While listed for transplant, one of my main preoccupations was the impact chest tube scars would have on my body image. I already had a chest tube scar from one open-heart surgery, and I wasn’t fond of it. Chest tubes would be better labeled chest hoses–they’re huge! But my chest tube scars healed, and they look more like an awesome tattoo than six additional blemishes to my already scarred torso. Honestly, I think I should have more impressive scars to show for the battle I fought.

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3. It takes a full year to recover. Don’t kid yourself.

Imagining myself younger, stronger, and more determined than most patients, I assumed I would recover quickly and surpass expectations. But it was a year before I tapered down to the lowest dose of Prednisone. A year before my doctors felt comfortable spacing appointments months instead of weeks apart. A year before my health stopped being my number one focus and I could find other things to talk and dream about.  

4Patients are surviving.

Going into transplant, I had a few friends who had received heart-lung and double-lung transplants, but the longest survivor I knew lost her battle after 12 years. I had less of an optimistic outlook on survival rates than I do now that I know more about the statistics and their inaccuracy. There are recipients alive today who had their transplants when centers first started performing heart-lung transplants (over 30 years ago), so doctors truly cannot determine a limit for how long these transplants can last.

5. Quality of life does improve.

Oxygenation had far-reaching effects that make me able to say with confidence that my quality of life after transplant is immeasurably better than before transplant. Simply by virtue of spending more hours a day awake, I get more done, appreciate life more, and have more experiences with the people I love. The best part? Joining my parents on hikes and sensing their joy as I speed ahead.

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Hiking with my parents in Sedona, Arizona, six months post-transplant. (Photo by Monica Sheffer)

This article was originally published to my column, Life After PH through Pulmonary Hypertension News. Since then, I’ve gotten feedback from other transplant patients adding to my list, and patients pre-transplant determined to savor the foods they can still eat. Still others have asked questions only their doctor can answer. I have a hard time empathizing with those who obsess over certain sacrifices necessary for transplantation. No, I’m not another voice in transplant support groups chanting, “But you can breathe!” as if that fact eases every trial for a lung transplant patient, despite its inefficacy on the rest of the oxygenated world. What I keep going back to is that transplant is a choice between life and death. One does not receive donated organs otherwise. Most will choose to live, and find ways to adapt to whatever life brings.

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Pre-Op

The Wait That Helped Me Heal

The Hard Part

I’ve heard that waiting for the transplant is the hardest part. Every day after my transplant, I heard, “This is the hardest part,” leaving me a firm believer in relativism and forever poised for future “hardest parts.”

When I went on the heart-lung transplant list, I didn’t know if I would survive the wait for donor organs. My health was declining at a rate I’d never experienced in my 17 years with severe Pulmonary Hypertension (PH). I woke up knowing each day might be my last and fell asleep questioning whether I would wake up.

Born with a prognosis that I wouldn’t live to attend high school, I always struggled to plan for a limited life, balancing the temptation to accept medical expectations with my desire to set similar goals to my peers who weren’t battling chronic illness. When college became particularly demanding, I considered giving up. “If this is my last year alive,” I thought, “do I really want to spend it shut up in a concrete tower of architecture studios?” Instead, I graduated with a degree in a related field that allowed for fewer dizzying all-nighters.

Waiting for a transplant was a new version of my indeterminable life, with additional limitations and unanswerable questions. The four-hour radius my transplant center gave me was less limiting than the nasal cannula tethering me to my oxygen concentrator. Walking a block made me light-headed and climbing the stairs to my room left me gasping for breath.

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Feeling sick and tired and sick and tired of waiting.

After cancelling several trips I’d scheduled before my hemoptysis event, I was hesitant to make new plans, however small. I met a friend for coffee the day before I got the phone call offering me my new heart and lungs: we discussed meeting again soon, but I couldn’t commit. “Maybe I’ll have the transplant tomorrow. Who knows!”

The Transformation

I kept a journal during this period: “Now I’m in purgatory waiting for transplant and no one has any idea when I will get the call,” I wrote. “Could be tonight; could be two years from now.” My phone was always charged with the ringer at full volume. Knowing it might never ring, I had to consider how I wanted to spend my last days and the legacy I would leave.

While coughing up bright red blood into my friend’s toilet bowl in Seattle, I was quite sure I would die on the cold tiled floor. In that moment I cared little about the places I had yet to visit, and the milestones I had yet to reach. I cared about the impact I had made on other people and words left unsaid.

Immobilized by an unknowable future, the wait for transplant gave me time to cover emotional distance. I sorted through past traumas to get to the root of my fears about going into surgery. I had candid conversations with my caregivers about what I wanted in the event of my death. Most importantly, I expressed my love for my family and friends.

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A cartoon of my internal organs celebrating a transplanted heart and lungs. that I drew 8 hours before my call for transplant.

Though I moved in with my parents and away from my local friend circle while I waited, friends from all over the country began reaching out. A friend with whom I’d only spent one week at summer camp quickly became my closest confidant, our friendship existing only through text messages and care packages until five months after my transplant.

Reading and writing were chores I did just to get by in school. Unable to do much else, I embraced the two as a distraction and creative outlet. I started reading memoirs with the idea that I might write my own during what I imagined would be at least a year spent waiting for a donor.

28 days after listing, I got the call that ended my wait. In the almost 14 months since my transplant, I read 29 books, started a blog, and had my writing published by The Mighty and Pulmonary Hypertension News. Watching my health improve for the first time, I can plan for the future like I never dared before.


Originally published by Pulmonary Hypertension News.

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Recovery

The Waiting Rooms That Give Me Community

When my alarm goes off at 9am in clinic and I pull out my bright green pill organizer, others around me start to do the same. “I’m glad she did that because it reminded me,” I hear one woman say as I leave the room to find a space where I feel safer taking off my mask for the five seconds I will breathe unfiltered air and drink sips of water.

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One week’s worth of the medications I take.

Lung transplant clinic days begin when I take a seat in a line of patients waiting for the Pulmonary Function Lab to open at 7:30am. Next, we race to complete chest x-rays and blood work before we can get our name on the list to see a physician. Some days I spend five hours at the hospital leading up to a five-minute meeting with my doctor. This isn’t unique to transplant clinics. Hospice physician, Ira Byock, recalls his father saying twenty minutes into a wait at a cancer center, “They give you only six months to live, and then, little by little, they take it back from you.”

Masks make it easy to recognize my compatriots so I try to use time in waiting rooms to meet other transplant recipients. I carry business cards with a link to my blog to make it easier to stay in touch. I’ve met patients ten, fifteen, and even twenty years post-transplant, heard stories about overcoming rejection, and traveling internationally. Sometimes it’s just nice to not be the only person in the room taking Prednisolone, a drug that makes me pretty much constantly on edge, and that has lived up to my pharmacist’s initial advertisement: more side-effects than letters in its name.

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Fellow pulmonary hypertension status post-double-lung-transplant patients Mark Simpson and Mari Matsumura share stories in a waiting room at Stanford Medical Center.

The drug that kept me alive before my transplant was so uncommon I had to fly or drive long distances to find other patients (and doctors) who understood it. My mom and I attended a pulmonary hypertension (PH) Conference in 2000, a week after my diagnosis. A fire alarm went off in our hotel the first morning. Standing outside in our pajamas, we met other families attending Conference, who, unlike us, had thought to grab backup supplies for their pumps that, like mine, administered intravenous Flolan, a medication with a worrisome 6-minute half-life. Forever after, I had a dedicated “backup bag” that went everywhere I did. Biennial PH Conferences were one of few forums in which I met other patients and learned critical information, like how to conceal my pump under a dress. Now I have a built-in community I can recognize based on the time they have their labs drawn.

Barring a few exceptions, all transplant recipients take an immunosuppressant with the brand name Prograf (also known as Tacrolimus and formerly FK506) every twelve hours. Transplant teams have a target level for the Tacrolimus concentration in the blood based on type of organ transplant, time since transplant, and so on. You don’t want the level to be too low or you might reject your transplanted organ(s), but you don’t want it so high that you risk infection and toxicity. Since the level can fluctuate a lot while trying to find the right dose with a handful (literally) of other drugs, labs must be drawn frequently–twelve hours after the last dose and immediately before the next. For me, that means at 9am or 9pm.

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Two-time heart transplant survivor Corie Crowe models in a surgical mask alongside her medication.

Sometimes I’m just not in the mood to deal with needles in my veins right after breakfast. Luckily, a friend I met in a waiting room taught me the secret of the after-hours lab. When a father and son line up with me at 8:30pm, I’m certain they’re checking Prograf so I introduce myself and ask what the boy had transplanted. Forever a perfectionist, I have them check in ahead of me so I can wait to have my labs drawn a little closer to 9pm. Out in the hallway, I overhear the phlebotomist praising the boy’s bravery. I smile, transported to bittersweet childhood memories.

As a child with PH, phlebotomists told jokes in vain attempts to distract me from the needle piercing my skin, my parents had me squeeze their hands, and rewarded me with bags of chips after my blood was drawn. As an adult with a heart-lung transplant, I calmly pull down the arm rest, squeeze my fist, and take a deep breath. In a few moments hundreds of thousands of other transplant recipients will be silencing alarms and swallowing pills. I am not alone.


Originally published by Pulmonary Hypertension News.

Photos © Kathleen Sheffer Photography

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Recovery

How My Cosmetic Products Changed with My Chronic Illness

“What’s with the nail file?” my sister asked, her eyes failing to conceal her amusement. Still grinding my nails down, and with two backup emery boards in my purse, I explained my new habit, one of many recent changes she bore witness to.

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My nurses gave me a present when I was discharged after my heart-lung transplant. They included a set of nail files, explaining that filing my nails down was safer than using clippers, which could lead to open wounds and infection. I think this applies more to infants who could lose an entire toe to adult nail clippers. I’ve had no issue caring for the cuts I get while rock climbing (this makes me sound way more hardcore than I am). Still, I latched onto the idea and started bringing nail files everywhere. Filing helped pass time in waiting rooms and gave me something to do instead of building anxiety.

Makeup

Expired products can harbor bacteria, so I trashed lots of cosmetics after my transplant. A drug-aided identity crisis contributed to my desire to dispose of relics of my life before transplant. With the promise of three months living near the hospital, away from my friends and career, I struggled to imagine a future resembling my past. A year later, I still don’t own makeup. It doesn’t make sense to apply concealer right before I put on an N99 mask.

I welcome any stranger to point out my lack of eyeliner instead of the far more obvious feature distinguishing me from my peers. Applying makeup can be fun and make me feel good, but newfound confidence and an appreciation for naturally pink lips, cheeks, and fingernails makes me less interested.

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N99 respirator mask worn to protect against infections.

Mupirocin Ointment

I didn’t trash Mupirocin, an ointment prescribed by an otorhinolaryngologist — a specialist concerned with diseases of the ear, nose, and throat — to prevent nosebleeds caused by drying supplemental oxygen and high doses of blood-thinning Coumadin. One New Year’s Eve, I spent six hours bleeding into a trash can of tissues until it finally stopped. Other nights I went to an emergency room. I haven’t had a nosebleed since my transplant, but I still apply Mupirocin when dry environments like airplanes irritate my nose.

Deodorant

When my body was fighting pulmonary hypertension (PH), I hardly ever broke a sweat. In fact, I felt colder with exertion. In the middle of an exercise class last week, I looked down to see my entire arm shiny with moisture. Disgusting. I’m regularly horrified by how much sweat my body can produce. It’s as if I’m going through puberty all over again, and it’s just as startling at 23 as it was at 13.

Acne Treatment

Thanks to prednisone, I have acne for the first time in my life. I’ve changed up my body wash and apply ointments prescribed by my dermatologist. I’m grateful to have the time and energy to wash my face every night. When I had PH, I was overwhelmed by the steps I had to take before I could get in bed: mixing intravenous medicine, changing pumps, taking pills, applying Mupirocin, and setting up oxygen, to name a few.

Hair Removal Cream

Many patients experience rapid hair loss or hair growth with large doses of prednisone after transplant. I gained a mustache and sideburns. Not ideal for a 23-year-old woman. A nurse practitioner told me patients “just deal with it,” but luckily, members of Facebook groups and my dermatologist suggested other options. Hair removal cream became my go-to fix once I moved past the nasty smell.

Sunscreen

Due to immunosuppressive medications, transplant patients are up to 100 times higher risk of developing skin cancer. I wear clothing with long sleeves, sport dorky hats, and embrace applying sunscreen before leaving the house, even in foggy San Francisco.

Antibiotic Ointment

When I hike or rock climb, I bring fresh Neosporin (it expires quickly) and bandages — an easy way to maintain peace of mind and an active lifestyle.

Cocoa Butter

A friend recommended dabbing Palmer’s cocoa butter with vitamin E on my chest tube scars after they started to heal. I can’t know for sure that this had an impact, but it gave me a sense of control over my healing process. I apply it to all my scars (including scars from Broviac catheter replacements) and wish I had done so before my transplant. Applying the cream forces me to touch my scars and become more comfortable with them.

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Scars healing eight months after surgery.

I’m fascinated by how the change from life with PH to life after transplant with chronic immunosuppression manifests in my life every day. What I lost, kept, and gained in the transition was more tangible and far-reaching than I anticipated.


Originally published by Pulmonary Hypertension News.

Photos © Kathleen Sheffer Photography

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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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Recovery

Valuing My Life With PH

I found a four-leaf clover, at last. I haven’t found one since my heart-lung transplant and I have been worried four-leaf-clover-finding was another part of Kathleen that did not carry over from pre- to post-transplant life. My memories of spotting four-leaf clovers go as far back as first grade when I would spend recess sitting in the field scanning the grass for those extra-special shamrocks. One summer day I collected 26 four-leaf clovers from the lawn in Verna’s backyard while my sister swam in the pool. To have gone more than a year without finding one seemed like a bad omen, since hunting four-leaf clovers became second-nature, continuing through college and long after I let go of the collection pressed between the cardboard backing and glass of an elegant frame Verna had on hand.

In gaining a healthy heart and pair of lungs, energy, and circulation, I’ve lost parts of my identity. Beyond spending less time sitting on lawns, I no longer have a Congenital Heart Defect or Pulmonary Arterial Hypertension (PH). During an O2 Breathe Walk, a fundraiser for the Pulmonary Hypertension Association, I was given a T-shirt that says “PH Survivor.” I debated whether I could still wear it. For a long time I thought that transplant meant I had given up the fight against PH; that I had failed to last as long as I needed to for researchers to find “The Cure.” Honestly, I didn’t wear the shirt outside even when I had PH, and it took some doing to take a photo that showed more than “URVIV.” When I reframed transplantation as a treatment for PH, I decided I am still a PH survivor because I was born with PH and fought it. I wore the shirt to bed last night (it makes a great pajama top)! 

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Like others I tried over the years, this treatment option comes with major side-effects. When I tell someone I had a heart-lung transplant, I’m usually greeted with “congratulations,” unless they are particularly clueless and say, “Get well soon.” When I was dealing with intense postoperative pain and brain fog, it upset me to be congratulated on my “new life.” With multiple blood draws, tests, and appointments each week, it didn’t feel like much of a life in the beginning. Now when I meet recent transplant recipients, I have the urge to say the same, knowing how difficult and rare it is to survive the wait for a donor and the operation itself.

“Congratulations on your new life” does not acknowledge the value of the life before the transplant. I had 23 years of that “old life,” and I had grown fond of it. PH sucks (this super cool enamel pin by artist and PH survivor, Jenny Janzer, agrees with me). Life with chronic illness is not easy, but like most challenges, it can be an experience rich with unique opportunities. Everyone’s interests evolve with age, but many of mine developed because of my illness and the limited choices it gave me.

While my cabin-mates at summer camp swam in the pool, I did crafts. While I was at home with pneumonia, tethered to an oxygen tank, I did jigsaw puzzles and played board games. While my sister went to soccer camp, I took a web design course. Now that I need to exercise my new organs daily to maintain their function (and my sanity), I spend less time on art projects and board games. As frustrating as it was to be slowed by shortness of breath, I noticed more things when I moved through the world with PH, and would take photos on walks with groups, while surreptitiously catching my breath.

“Congratulations” does not acknowledge the spectrum of grief and celebration inherent to transplantation. It’s a continuous grief process that began with the loss of my organ donor. “The Call” offering me a heart and lungs en bloc, brought the knowledge that someone with A+ blood had died, that I might die in surgery, and that I might live to experience life without PH. Sixteen hours after my call, I lost the heart and lungs I was born with, and my pump, a machine that delivered life-prolonging medication to my heart for 17 years.

Recently I worried that, without refresher training, I could not perform the procedures I did while on the pump. Then I decided it’s OK for a 24-year-old with a liberal arts degree not to know how to mix intravenous medicine. Still, I miss having saline, gauze, and sterile bandages on hand, especially since my active post-transplant lifestyle seems to make me more prone to injury.

One night, while hospitalized after my transplant, I went for a walk with my dad and my IV pole. Stiff, cranky, and swollen from steroids, I was furious when dad said, “I am just so happy for you.” Like “congratulations,” his statement was an insufficient summary of complex emotions. What I’d prefer to hear as a transplant recipient, and say to others in my situation, is difficult to summarize in a few words. The closest I’ve gotten is this: “I am so happy you are alive, and I know it isn’t easy.” Those of us living with chronic illness often see ourselves as a burden to others and don’t want our complaints to make us appear ungrateful. We need to be reminded that our lives are valuable. We need others to know that the fight is not over after an operation; it is ongoing, never easy, but full of opportunity.

I love having the ability to chase after my dog, go on 9-mile hikes with my friends, and photograph 10-hour weddings with heavy equipment in tow. My post-transplant life is very much informed by my PH life, empowering me to appreciate falling asleep without an oxygen cannula, and changing clothes after showering, instead of sterile bandages. Last month, my sister and I took our bikes to ride along the same path we rode so often as children, and later as teenagers. The slopes I previously perceived to be mountains are now gradual hills, and the ride that drained a full day’s energy barely ranks as a workout for my new organs. When I catch my breath with ease, I cry for the little girl with blue lips who had to learn before other kids to shift gears on a bike to make it up hills. I cheer for the transplanted woman who now can race her younger sister up those hills (and win fairly, sometimes), even if it’s 20 years late. I cry for my donor, because my new life is only possible because they lost theirs.

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Relief washed over me when I saw it. As if it might run away from me, I hastily snapped the delicate stem and examined the stunted fourth leaf crowded by the others. I’m comforted to know there will be time in my new life to sit in the grass disentangling shamrocks until I find the elusive extra leaves that make me feel as special as they are. Now it will happen because I make the time to sit and look, and not because I’m too tired to stand.


Portions of this post originally published by Pulmonary Hypertension News.

All photos © Kathleen Sheffer Photography.

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Recovery

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.

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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. Partgreenhouse, partlibrary, partchurch: 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.

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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.

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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.

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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.

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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).

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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.

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Cornelius Boots playing a shakuhachi (Japanese bamboo flute).


All photos © Kathleen Sheffer Photography

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