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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Recovery

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.

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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.

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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.

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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.

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Recovery

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. 

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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

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Recovery

Volume Boost

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.

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

 

 

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