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.

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.

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.

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.

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Originally published by Pulmonary Hypertension News.

Photos © Kathleen Sheffer Photography

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.

Nail files

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.

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.

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.

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Originally published by Pulmonary Hypertension News.

Photos © Kathleen Sheffer Photography

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.”

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.

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.

Chest x-rays before and after transplant.

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Originally published by Pulmonary Hypertension News.

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)! 

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.

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.

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Portions of this post originally published by Pulmonary Hypertension News.

All photos © Kathleen Sheffer Photography.

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

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.

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.