Recovery

Saying Thank You: Writing to My Donor Family

For months, I agonized over how to offer my condolences to people I’d never met for a loss about which I had no details. I imagined different scenarios: how different it might be for a parent to receive the letter, compared to a child or a sibling. Because organ donation is an anonymous process, my doctors gave me no information about my donor after my transplant ― not gender, not age and certainly not cause of death. My social worker told me I could write a letter to the family of my organ donor and I might be able to learn more about my donor if someone responded.

After reading a few sample letters other recipients had shared online, I decided all I could do was write about myself. Thinking the letter’s recipient(s) would want to know who I was and how I was doing, I described my life before the transplant, and why I needed a new heart and lungs. I wrote about how my life has changed since my operation, and my goals for the future. I thanked them for saving my life.

With my 24th birthday in mind as a soft deadline for my letter, I delivered a hand-painted watercolor card filled with my best condensed handwriting to my social worker near the end of April. A weight lifted when I had finished, as if I’d just turned in a final paper. Now, when people asked if I knew anything about my donor, I could say I had taken steps toward knowing more.
In July, after celebrating a full year with transplanted organs, my thoughts returned to the letter. I’d heard I would be notified if and when the letter was delivered to my donor family. On a whim, I emailed Donor Network West, the organ procurement organization involved in my case, to check for an update. A call the next morning informed me the organization had not received any correspondence from me. To my dismay, the letter was lost, adding another item to my list of disappointments in my transplant team. I wrote again, this time in an email, promising future handmade cards. Still nothing.

I believe it’s important that my donor family knows how often I think about them and my donor, and how hard I work to care for their gift. As I return to a routine that isn’t entirely dictated by my health, I can see more friends, some of whom I lost touch with while in the throes of medical drama. At coffee with a friend from college, I was taken aback when she asked if I feel better now than I did before my transplant. Admittedly, she doesn’t know much about pulmonary hypertension, and I was pretty good at hiding my symptoms when we lived together.

When my team was listing me and I was forcing myself to picture best-case outcomes, I didn’t imagine the life I have now. My transplant changed my life in truly unimaginable ways. Not only can I breathe easier, but my whole circulatory system is healthy now! I’m thriving, and I want my donor family, in addition to my family and friends, to grasp just how transformative this has been.

With the holidays approaching, I am writing again. I delight in celebrating birthdays and other occasions with my family, but recognize the inherent unfairness. My donor family spends their holidays without the person who saved my life. I know that I didn’t cause or hasten my organ donor’s death, and that putting their gift to use is the one thing I can do to help some good come out of their loss. Still, I understand that their family might not be ready to rejoice with mine.

It was surprisingly painful for me to write my first thank-you letter, and I went through several drafts. I had to reflect on my life with PH and how close to death it brought me, in addition to empathizing with my donor family’s grief. I cried a lot more than I ever expected I’d cry while writing a thank-you card. Everyone has to go at their own pace, but I encourage other recipients to start writing as soon as possible.

Even though my donor family has not responded, writing to them has brought me closer to closure. The act of describing one’s life before and after transplant is an important step in processing the amorphous mass of emotions involved.

Some of the resources that helped me write my donor family include guidelines from Gift of Life and from UNOS. Sample thank you letters worth consulting include ones published by Los Angeles TimesSharlie’s Angels Blog and Bob’s New Heart Blog.


This post was originally published by Pulmonary Hypertension News.

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Recovery

Redefining Self-Image

The best product of my teenage angst was a series of abstract paintings entitled, Attached to a Machine I through IV. During my junior year of high school, I was particularly upset that my doctors had switched me from a tiny pump that fit into my pocket (CADD-MS™3) to a tiny pump that fit in my pocket (Crono Five) with a syringe that stuck out a bit. Truly catastrophic.

The new pump meant that I could receive medication at a lower concentration and faster rate, putting an end to a series of hospital stays caused by clots that formed when my medication was accidentally stopped for too long. Each time my Broviac catheter clotted, surgeons had to replace it. The operation required general anesthesia and often came with additional complications, like blood infections I spent weeks fighting, with caustic medication tearing through my peripheral veins.

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Oil on canvas.

Foolishly, I fought hard to keep my cute, pager-sized pump, only recently freed from the brick-sized pump (CADD-Legacy™1) I started on in first grade. Introduced to the market by an Italian manufacturer, the Crono Five pump came in a snazzy green color. At the time, I had a Samsung flip phone with a megapixel or two, and I started taking close-up pictures of my pump, printing them out, and then painting them. The results made me more comfortable with my latest attachment and earned me an A in my high school art class.

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Acrylic on canvas.

My pump—whether it was the CADD-Legacy™1, CADD-MS™3, or Crono Five—gave me life. Or rather, kept me from death. Any interruption to the medication brought on nauseating symptoms of withdrawal, even in the few moments I discontinued the delivery to change out the pump, syringe, and tubing. In my more dramatic moments, I thought I shouldn’t be alive—that only a series of tubes and beeps sustained me, and that a machine defined me. Painting was a physical outlet for my rage, the brush strokes therapeutic. Abstracting the machines that administered my treatment gave me control over the image of my illness.

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Chalk and graphite on mat board.

Now I have life because of another human being. My tissue stitched to my donor’s and not to a tube, my life has new meaning. When I’m flying down a hill on a bike, sweaty and exhausted from the climb, I exalt for both of us. I take this healthy heart and lungs where my organ donor cannot go in death, and where I was never able to go in life with PH. In December, I traveled to the south rim of the Grand Canyon, at an elevation above 7,000 feet—my first trip post-transplant, after a lifetime limited to altitudes below 4,000 feet.

Painting allowed me to create beauty from the trials of my disease. My organ donor created beauty through the trails I’ve hiked, walls I’ve scaled, photos I’ve taken, hugs I’ve given, jokes I’ve told (they’re wildly funny), and the life I’ve lived because of their gift. Every impact I make builds on the impact my donor made in their selfless decision. Owing my life to another human being, rather than a pump, is a responsibility I am increasingly honored to have.

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Hiking at altitude in Sedona, Arizona, with my family.

Author and hospice chaplain Kerry Egan observes that the hard things we go through define us, but that we decide how they define us. She writes in “On Living” about finding a way to let her hard thing be kind to her. My ugly syringe led me to paint, and my transplanted heart and lungs led me to write and climb rocks. I never wanted a pump, or a disease, for that matter, and I never wanted a transplant. I often wish I had a normal childhood or could hope for a normal future, whatever that means. But at the same time, I wouldn’t want to miss out on the (sometimes fuzzy and abstract) beauty that defines my abnormal life.

Originally published by Pulmonary Hypertension News.

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Recovery

Life with More Spoons

My sweet friend Teresa has stopped asking me if I have enough spoons to hang out with her. With my health stabilizing, appointments fewer and farther between, and my oxygen saturation at a steady 100 percent, I have a lot more spoons to work with. If you’re sitting there wondering whether heart-lung transplants come with a surplus of cutlery, let me explain The Spoon Theory.

Christine Miserandino originally coined the metaphor to explain what it felt like to live with lupus. At a diner with a friend, she used spoons to quantify the total supply of energy she had between rests, and the amount of energy (number of spoons) needed to perform daily tasks like getting out of bed and taking a shower. Borrowing from nearby tables, Christine gave her friend a bouquet of spoons and had her friend list the activities she did in a day, taking one or two spoons away for each. To her friend’s dismay, her bouquet quickly dwindled.

Spoons were a useful symbol for me to explain my limitations to friends and family. When I had pulmonary arterial hypertension (PH), I was tired from the moment I rolled out of bed at 10 a.m., tearing my oxygen cannula from my nose, and heading to the bathroom for my first round of diarrhea for the day. I almost never made my bed because all the reaching and tugging involved was exceptionally depleting. After cooking a meal, I would struggle to clean the dishes I had used, creating tension with roommates. Thinking about each activity in terms of the number of spoons it required helped me budget my energy with more intention.

Since my transplant, I’ve gained an appreciation for how hard my life was with PH. Everything is easier now, and I feel kind of guilty because many of my friends (and readers) continue to battle health issues. It’s impossible as a healthy person to fully understand life with PH, but I battled the disease for 23 years, and now I’m learning what life is like with a healthy heart and lungs — what it feels like not to use all my spoons in a day.

The cashiers at my local supermarket tease me because I come in a few times a day to purchase one or two items. I can go to the store as many times as I like without experiencing fatigue. It’s a privilege not to have to plan as much of my life in advance.

More than a year with my new heart and lungs, I still budget an inordinate amount of time for certain activities, like showering, which used to take at least half an hour with a sterile bandage change. My mind has not quite caught up with my healthy body, and I surprise myself when I’m able to exercise, do household chores, and work on my photography business all in one day.

Experiencing life with more spoons, if you will continue to indulge this metaphor, has made me fearful I will lose them again. I’m protective of my newfound health to the point of paranoia. I feel I cannot delay any of my goals, and that I owe my energy to those who have less.

In high school, Teresa waited patiently for me to catch my breath every few minutes while I attempted to hike with a group of friends. After college, she’d understand when I didn’t have enough spoons to meet her at a bar. Last month, we went hiking after I had spent the morning rock climbing. This time she didn’t have to wait for me — I even carried her water bottle. With ample spoons left, we went to dinner, and I drove her home. My therapist tries to tell me that just because I can do more now, doesn’t mean I have to or can do everything. I’ll let you know when I figure out how to slow down.

Though I’m afraid my health might decline again, and transplantation comes with myriad risks and unknowns, every day I accomplish more than I ever imagined doing when I had PH, and even find myself with extra spoons to spend doing silly things like brushing my dog’s teeth before bed!


Originally published by Pulmonary Hypertension News.

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Pre-Op

5 Things I Wish I Knew Before My Transplant

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

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

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

1. Transplant comes with permanent dietary restrictions.

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

2. Chest tube scars heal.

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

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

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

4Patients are surviving.

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

5. Quality of life does improve.

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

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

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

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Pre-Op

The Wait That Helped Me Heal

The Hard Part

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

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

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

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

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Feeling sick and tired and sick and tired of waiting.

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

The Transformation

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

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

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

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

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

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

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


Originally published by Pulmonary Hypertension News.

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Recovery

The Waiting Rooms That Give Me Community

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

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One week’s worth of the medications I take.

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

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

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

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

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

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

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

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


Originally published by Pulmonary Hypertension News.

Photos © Kathleen Sheffer Photography

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Recovery

How My Cosmetic Products Changed with My Chronic Illness

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

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.

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N99 respirator mask worn to protect against infections.

Mupirocin Ointment

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

Deodorant

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

Acne Treatment

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

Hair Removal Cream

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

Sunscreen

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

Antibiotic Ointment

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

Cocoa Butter

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

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Scars healing eight months after surgery.

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


Originally published by Pulmonary Hypertension News.

Photos © Kathleen Sheffer Photography

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