Recovery

Always an Adventure

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

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

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

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

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

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

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

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

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

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

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Recovery

A Day in the Life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Recovery

Thanksgiving

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

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

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

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

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

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

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

 

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

 

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Recovery

Inside Acceptance

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

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

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

I wrote this in the ICU:

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

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

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

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

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

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

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

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

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

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

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

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

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

All photographs by Nick Otto: nickotto.net

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Recovery

Unpacking

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

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

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

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

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

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

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Recovery

To My Donor

I took your heart and lungs to Half Moon Bay and I walked through the sand like there was nothing to it. My body remained unfazed as I sunk my feet into uneven mounds of heavy sediment. Lacy white layers of foam flowed across my path and eventually flooded my sneakers when I was caught trying to photograph the hundreds of pelicans that were attacking the surface of the water. The sky was that deep blue color you only get on perfectly clear days and the breeze was strong enough that I didn’t mind the warm weather that greeted my fog-hunting hiking companions and me. I took deep breaths, letting the fresh air fill your lungs and then I began to cry. This will sound platitudinous, but in that moment I realized I would not be standing there without your gift. The realization of how close I came to death hit me again with new power. Because of your generosity, I stood in my soggy running shoes, the sun warming my tear-stained face as I stroked one of several vaguely heart-shaped rocks I hoarded in what became a very heavy purse in the short time it took to walk along the tide pools.

Your heart and lungs and I have spent a lot of time irritable and in pain. I have felt ungrateful and unworthy. Transplant inherently comes with tremendous loss, but it seems that every day now I discover something beautiful made possible only by our surgical merge.

I realized childhood dreams one afternoon when I took your heart and lungs running across several stretches of perfectly groomed lawns on Welch Road. My sister and I kept pace with Basil, my crazy short-legged dog who gets bursts of frantic energy after urinating on patches of grass. I kept going and going, busting through my own outdated expectations of my body’s limits.

I’m convinced Chris Martin sang Adventure Of A Lifetime directly to me on the night I took your heart and lungs to watch Coldplay perform in a stadium of 70,000:

Now I feel my heart beating
I feel my heart underneath my skin
And I feel my heart beating
Oh, you make me feel alive again
Alive again
Oh, you make me feel
Like I’m alive again

It’s hard to top watching a band I’ve loved for fourteen years put on an outstanding show, but I was pretty stoked to realize your heart doesn’t pound painfully against my chest in the presence of loud music like mine used to. It felt incredible to be able to sing and dance without exhausting your heart and lungs; to stand without immediately getting pain in my feet; just to be alive to accept my uncle’s invitation and add the show to the bucket list I’ve formed entirely of already completed items because I was supposed to die when I was 9 and have lived on borrowed time ever since.

I took your heart and lungs to the Strawberry Canyon Fire Trail and I made a joke at my beloved sister’s expense, thankfully catching her in a moment of tolerance for my abrupt humor. I doubled over, shrieking with laughter at my own hilarity. This behavior is more common than I’d like to admit, but the ability to speak while climbing a hill and continue climbing at the same pace, even as I cackled for far too many lonely seconds, was all new.

My mom and dad took turns calling out the number on each elevation marker we passed along the winding stretch of CA-41. I sat in the back seat, nervously filing down my nails as I waited to feel a change in my breathing. But all that changed as we passed the 5,000-foot marker was the width of my grin. After a morning climb to 5,390 feet I danced with your heart and lungs at a wedding no one expected me to be able to attend. I was embraced by a stream of people with intimate knowledge of what I’m going through. Ten years ago the bride’s youngest sister, Rachael, and I sat on a sandy wall preoccupied with illness and our own mortality. At age thirteen, her greatest wish was to live to see both her sisters get married. On September 17th Rachael and I sat on dainty upholstered chairs at a true fairytale wedding. She hooked up an infusion over her salad plate and I periodically returned to my table to swallow handfuls of pills throughout the evening. We teased each other: me telling her how proud I had been when I learned she wasn’t the source of the mid-ceremony medical scare and her demanding to see my puffy cheeks and wherever else I could be hiding Prednisone fat. A mutual recognition of the magnitude of this moment went unspoken. By living to celebrate the marriage of her eldest sister, a woman who kept me laughing and dancing through every summer camp heartbreak, we confounded doctors’ predictions and checked off a bucket list item.

You gave me your heart and lungs when you could take them no further. To honor your gift, I take your heart and lungs where mine could not go. Thank you for making me feel alive again.


www.donatelife.net

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Recovery

Uncharted Territory

I was told that transplant meant trading Pulmonary Hypertension for immunosuppression with lifelong medication and monitoring. Medication and monitoring? I’ve got that down. I severely underestimated how difficult it would be to learn all new medications, tests, terms, risks and necessary precautions. I am well equipped to address any issue that might come up with a pump I will never be attached to again, but I can’t explain why my transplant team does not want me to spend a night alone. What could go wrong? No, actually. What could go wrong? Friends keep asking me simple questions to which I have incomplete answers. My confusion in this adjustment period is frustrating for all parties—probably especially for the waiter I dismissed three times as I tried to decide if heated Gorgonzola is safe for me to eat before choosing not to risk it and substituting Parmesan.

This week I met with a new Primary Care Physician in Santa Rosa. Although I’ve already completed several New Patient Intake Forms since my transplant, they don’t seem to get any easier. Which parts of my medical history are relevant? The stress test I had last November won’t be very useful, but they’ll care about my last Pap smear. My history of asthma no longer applies, but I probably have the same seasonal allergies. I’m used to meeting with a new doctor and having a list of standing orders and medications I need prescribed, and a whole lot of educating to do. Now I encounter doctors who are more familiar with how my body works than I am simply because my transplant body is more similar to a normal body than my PH body ever was. It’s at once refreshing and confounding. All the Prednisone I’m taking hardly allows me to stay seated on the exam table, let alone answer the question “what do you need from me?”

“I don’t know yet” is the best I can manage—to answer my doctor, my waiter, and my friends. I spent sixteen years amassing information that pertained to my PH body, learning so much through trial and error. Now here I am, 23-years-old, in a body that looks much the same on the outside—a little pinker—but still feels foreign to my muddled brain. Years of practice prepared me for the myriad of things that could go wrong with my PH body. There seem to be even more things that can go wrong with my transplant body, but at less than eleven weeks post-op, I am still learning what those things are and how—or if—I can prepare for or prevent them.

Several hilarious animated YouTube videos and a couple peeks at scary medical articles later, I have a basic understanding to share with you. Things that can go wrong with my transplanted body mainly fall under the categories of rejection and infection. I am taking three medications (Prograf, Cellcept, and Prednisone) to suppress my immune system so that it does not attack the donor organs—a response known as rejection. There are two types of rejection that apply to my transplant. Acute rejection generally occurs within the first year after the surgery and can be treated with steroids and immunosuppression. Chronic rejection is a slower and progressive response that involves irreversible damage to transplanted tissue. I skimmed over the description of hardening arteries and focused on the part about it being further down the road. Not a concern for today. Today I am not showing signs of rejection and all I can do to potentially prevent it is to keep taking my medications exactly as they are prescribed. I can do that.

The other player in this game of immunosuppression is infection. I am at a higher risk for life-threatening infections because I have fewer pathogen-fighting white blood cells, thanks to my lifelong accomplices, Prograf, Cellcept, and Prednisone. To combat infection I have a battalion of antimicrobials: one antibiotic, one antiviral, and two antifungal medications. I only need to take thirteen additional drugs to treat the side effects of the aforementioned seven. My labs are drawn weekly and include tests for common viruses. I record my daily vital signs and symptoms, and check in with the transplant team regularly. I wear a filter mask outdoors and in areas where people may be sick. Apparently there’s some nasty stuff in dirt that I don’t want to inhale directly into my brand spanking new (and forever fragile) lungs so my gardening days are over. I hope the plants on my porch that have been dead for a year won’t spend too much time mourning my green thumb. For the most part, I’m left to my own devices to defend against infection. After years battling frequent pneumonia I’m already in the habit of refusing shared food. “No thanks, I promise I do not want any of that tantalizing flourless dark chocolate cake you just took your second bite of.” I’ve been practicing slightly more incessant hand washing since my transplant, but germophobia is nothing new to our family whose hermetic Thanksgiving tradition grew out of the necessity to stay healthy for winter travel to a specialist in New York.

I’m still sorting through which parts of my pre-transplant life can be carried over into my post-transplant life. Some things are just a matter of time: I can drive again in October; I can live on my own when I no longer need the assistance of my caregivers (whenever I decide I want to do all my own cooking, cleaning and laundry in addition to managing twenty new medications); I can wear a mask less in a year, but I will always wear one in crowds and around sick people. I’m ditching my stash of oxygen tanks for some new companions—running shoes and deodorant. What could go wrong? The list is long enough to propel me headlong into a tailspin of despair and paranoia. That’s chronic illness for you. Fortunately I was allowed to carry my collection of coping mechanisms with me into this new life. There are lots of things I don’t know yet, or that I may be wrong about, but my familiar friends, Trial and Error, seem to be here to stay, and we’ve done pretty well together so far.

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Recovery

More Than a Wristband: Care from Exceptional Nurses

“This will be one of the bad days,” I had told myself when I pulled my mask over my face that morning. It seems my team really gets a kick out of putting foreign objects down my nose and throat. In the hospital I was on a ventilator and on three separate occasions I had an NG tube threaded through my nostril and down my throat to empty my stomach. I don’t remember much about the Endoscopy-guided Pyloric Botox injections for Gastroparesis, but I was incredibly aware of every “bite” sampled from my airways during my first bronchoscopy. Let’s just say there’s been a lot of Lidocaine and amnesia-producing drugs with varying efficacy. Next up was an Esophageal Manometry and 24-hour pH Probe study. I made the appointment for a Monday when I had a Cytogam infusion. May as well spend the three hours of chair-bound monotony with a tube down my nose and throat, right? It would be a test to see if I could incorporate my natural tendency to multitask into my new medical environment.

Having survived 30 minutes of singsong directions from a nurse who shoved a 47-inch plastic tube down my nasal cavity and then told me not to swallow, I returned to my apartment sporting the second “flexible tube” of the day and created a link to a clock that would count down to 12:45 on Tuesday. I packed my infusion survival kit—headphones, hand sanitizer, my Kindle, the seven-slot pill box of the day, an external battery and cable—and trudged back to the hospital, waving to the same construction workers I’d passed an hour before.

During my stay in the hospital my veins were terrorized by Vancomycin, a caustic medication that is not traditionally delivered peripherally. Every night for a week I had a fresh IV placed. The morning dose would go smoothly and twelve hours later I would begin the second infusion hopeful that the heating packs and saline flushes I’d used to care for my vein in the interim would prevent another infiltration. Then I would watch as the surrounding tissue swelled up with fluid and my fingers intuitively found the plastic clamp and then the buttons to pause the infusion and call my nurse. I grew to love a PICC nurse who used an ultrasound machine to place the most beautiful extended dwell catheters in my arms, but even those could not withstand this drug. One afternoon the PICC nurse stepped into the hall outside my room to have a heated phone conversation with my doctor and, mercifully, the preventative Vancomycin therapy stopped immediately.

The abuse of my veins has had a lasting impact so I was instantly comforted when this man, my advocate, walked into the infusion lab that Monday. It took three attempts and a crisis nurse to get IV access for my last infusion, but he placed the IV in one try. It wasn’t an easy stick, he admitted afterward, as if I hadn’t noticed. Knowing he would not damage my vein kept my anxiety at bay. I had suppressed my standard impatience and waited as he carefully searched for the vein because he had earned my trust—and I knew from experience that he would sass me right back.

I turned on my headphones and tuned out the unrelenting cacophony of alarms ubiquitous in a hospital setting. Nurses came in and out of the room periodically to check my blood pressure and adjust the settings on the infusion pump. For the most part I ignored them, focusing on my angriest alternative rock playlist and the witticisms of Sylvia Plath. A new nurse swept into the room and addressed the latest alarm. I was reluctant to acknowledge her attempts to start a conversation. We had the same oversized phone case, but mine was even more massive surrounding a 6 Plus. That should have been the end of our interaction, but for some reason I had the impulse to explain how much better the larger screen is for viewing photos and that I’ve decided the few times a month I find myself showing my portfolio on my phone are suitable rationale for toting an XL brick all day every day.

“You’re a photographer? I love taking photos—just for fun, you know?” Having piqued her interest, I slid the headphones down around my neck. We talked equipment, gigs, and Instagram until a distant alarm demanded her attention. She bounced back in twenty minutes later and we exchanged photos of our dogs, our friends’ dogs, and our parents’ dogs. Each time she came to my room we found another topic we could connect on. Our truncated conversations grew more sophisticated when we got to my medical history and her career path. Before I knew it she was hooking up the final saline flush. I had forgotten the needle in my arm and the tube in my nose, engrossed in our discussion.

I left what should have been three hours of pull-your-hair-out solitude feeling refreshed and upbeat. Some extra effort from two nurses brought joy and comfort to “one of the bad days,” reminding me of the power of individuals. It’s a lesson I’ve been taught before, but that has been thrown into sharp relief at a time when my concentration on my body makes me uniquely aware of the way my mood manifests itself physically. I track daily vital signs and weights, each beverage, meal, and medication that goes in, anything and everything that comes out—preserving oh so much dignity along the way (care to hazard a guess at which emoticon I use to log bowel movements?), my mileage and time spent exercising, the levels of a considerable number of chemicals in my blood, and any symptom I can’t chalk up to Prednisone. Developing this routine has made me feel more in control of the changes to my body. Despite my outpatient status, there will continue to be days when I have to relinquish control and on those days my providers can have tremendous impacts.

 

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Pre-Op

The Call

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

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

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

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

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

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

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

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

 

Photos by Monica and Kathleen Sheffer

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Recovery

I’m Doing Really Well

I’m doing really well. At first I believed that was just what my doctor told me to get me to stop asking questions. He is always in a rush to leave the room. “You’re doing really well,” he would repeat. “Okay,” I would think. But I am in more pain today than I ever was in the hospital. But I am constantly irritated and all my relationships are strained. But I wish I had my old life and poor excuses for lungs back.

I’m doing really well. I’m scared to admit it because I know how quickly things can change. I know there are other patients working just as hard as I am and not seeing the same benefits. Even as I write this I am not sure I will share it publicly. I’m still adjusting to this new life and every day is challenging.

I’m doing really well. My six-week bronchoscopy showed no signs of rejection. The numbers monitoring my lung function improve weekly. The Radiology staff can’t help but vocalize their satisfaction with my images. For the first time in sixteen years I am not taking Lasix, a potent diuretic that flushes nutrients from my body and can have long-term effects on kidney function. Stopping Lasix means I can delete the public restroom locator app from my phone. My doctor told me it is okay for me to move away from the hospital now—a full month sooner than predicted. I’ve been reticent to share all this good news; guarding myself from the expectations it brings.

I’m doing really well. Now I can feel it. I have muscle. I can hike and talk and catch my breath, all at the same time and without stopping. My Apple Watch tells me I walk more than five miles each day. I am hatching Pokémon like never before.

I’m doing really well. Last night I fought back a huge smile after a speedy post-workout shower. Sweating is brand new to me. So are showers that don’t begin with the application of Tegaderm dressings and end with a fifteen-minute sterile bandage change.

I will stay in Palo Alto for another week to pack and finish a round of appointments. Then I will begin the transition by living in Santa Rosa with my parents. I do not know when I will be ready to move back to San Francisco on my own. I do not know when I will start working again. I do not know how long it will take me to make sense of all that has happened in four months. I am still reeling from this experience: it has made me question everything I know about time and memory and rates of change. I hope someday I will find words to describe it all, but today I know I’m doing really well, and I can wait to ask the rest of my questions.

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