Kathleen Sheffer

@kathleen-sheffer | contributor
Kathleen Sheffer received a heart-lung transplant on July 1, 2016 at age 23. She started blogging at rosecoloredmask.com as a way to process the transition from life with Transposition of the Great Arteries and Idiopathic Pulmonary Arterial Hypertension to post-transplant life with chronic immunosuppression. Kathleen spends her days reading memoirs, photographing medication and going for long walks on the beach with her dog, Basil. 

Parents of Kids With Disabilities, Raise Survivors, Not Victims

The cover of New York magazine’s Nov. 27-Dec. 10, 2017 issue features a child with cystic fibrosis (CF), whose mother, Jen Gann, is filing a wrongful-birth lawsuit. Her midwife failed to deliver the results of genetic testing that revealed she was a carrier of CF. Rather than bring a child with CF into the world, Gann says she would have had an abortion. It’s heartbreaking to see this woman focusing all her energy into fighting something irreversible, victimizing her family because of a test that wasn’t available a few decades ago. I worry her attitude toward the condition will damage her child, and that she’s blind to all the good things about her son’s diagnosis, including their close relationship and awareness of the brevity and unpredictability of life, a truth healthy families may ignore. I asked my mom to read the article and tell me what she thought about it. Somewhat empathic, my mom tells me when I was diagnosed, she asked the chaplain, “How will I raise a kid who is going to die?” The response: “She’ll teach you.” I cry silently on one side of the phone as my mom details some of the unexpected ways my illness and I changed her life: “Her kid will overwhelm her with his ability to adapt and persevere.” There’s no handbook for raising a child with an incurable illness, 24/7 IV treatments, a younger sister, a competitive drive and a fiery temper, but my parents did an excellent job muddling through. These choices my parents made had a significant impact on my future. 1. Seek an optimistic community. Early on, my mom spoke to a mother at our preschool whose son had a different disability. “Find the people having success,” she advised my mom. She had regretted speaking with a parent who had no hope for her son’s future. My mom connected with other parents through the Pulmonary Hypertension Association. Email correspondence led to lifelong friendships with families we met at biennial PH conferences. 2. Be a source of shelter. My parents kept my life expectancy between them and the doctors. They encouraged me to get ready for the homecoming dance with my friends instead of attending the funeral of a younger kid with PH. They persuaded the social worker to let them watch the scary transplant video without their 9-year-old. When I turned 18 and my doctors started having more serious conversations with me, I was grateful my parents had shielded me from unnecessary information and disheartening statistics. 3. Lead by example. When my parents wondered how their 6-year-old would handle IV Flolan, my doctor told them, “If you handle it, she will.” My parents spent countless hours diligently using sterile technique to fill cartridges with precise amounts of highly concentrated medication and diluting solution, a daily process we called “mixing.” With plans to move away from home to attend college, I started learning the same method, gradually taking on more of my own healthcare. Miraculously, I had no infections after taking responsibility for sterile bandage changes and mixing. I felt obligated to take the same level of care they had when I was too young to help out. 4. Stay hopeful. My parents shunned negative information about PH after my diagnosis. Focused on the possibility of a cure, they saved money to help me attend college without a single doctor predicting I would live that long. When my mom read Gann’s article, she pointed out that “they could find a cure” for CF. Hospice physician and author Ira Byock writes in “Dying Well:” “Possessing a future — not only hopes and dreams but also immediate plans and expectations — is …vital to feeling whole.” When faced with a terminal illness, one must hold not only onto hope for a cure or other medical advancements, but also find a way to make plans while knowing the disease may disrupt them. For the most part, our family lives in the present, a tenet my mom emphasized last week when she rejected a salesperson’s suggestion that I buy a rock-climbing harness I can grow into. We let go of regret for medical errors and my belated diagnosis. We celebrate the extraordinary ways the challenges we’ve faced have changed our lives for the better. A version of this post was originally published by Pulmonary Hypertension News. We want to hear your story. Become a Mighty contributor here .

5 Ways I Manage the Reactions From Strangers About My Face Mask

I bought into the whole, “invisible illness/disability” thing until my condition became visible, but even less recognizable. Outside the clinical environment, few people guess that I am wearing a mask because I recently had a transplant. More common assumptions are that I have allergies, I’m training to exercise at higher elevations, or I am simply making a fashion statement. We make all sorts of incorrect assumptions when we recognize the presence of a disability. Offer our arm to someone using a white cane. Shout or mouth words to a deaf person. Keep students with wheelchairs in special education classes. When I wore supplemental oxygen in public because of my pulmonary hypertension, strangers would sometimes offer me their seat on the bus, but other times they’d ask me for a cigarette; the level of understanding was inconsistent. I’m unable to think of a so-called visible disability universally understood by the public. When I think about the times I was bullied as a kid, I tend to think of instances when I was teased for the ways pulmonary hypertension made my physical appearance different from the norm. I’d let comments from my peers slide off, chalking them up to youthful insecurity, or ending the conversation by using big words like “intravenous” and “vasodilator,” the other kids nodding wide-eyed, pretending to understand. But adults teased me too — for wearing a helmet ice skating while on high doses of blood-thinning medications, for carrying so many bags (a backpack for my IV pump, another for my school books, and a bag for backup medication), and for the rash they assumed was poison oak, but was a side-effect of a medication. As an adult, I’m still getting teased for doing what’s necessary for me to stay healthy. Last year, I wore a black face mask every day during the month of October. People stopped me on the street to guess my costume. I wasn’t posing as Hannibal Lecter, Batman’s Bane, or Darth Vader, though passing strangers delighted in rasping, “I am your father.” I wasn’t trying to look like a ninja or a Mortal Kombat character either. Three months post-heart-lung transplant, I had no interest in drawing attention to myself. Having undergone a life-altering procedure that would remodel my ribcage for several months, I already felt like I didn’t belong in my own body. Now I didn’t belong in the neighborhood I called home. I live in the vibrant Castro district in San Francisco; locals and visitors alike don all sorts of costumes without ever getting a double-take. One man hangs around with nothing but a gold sock covering his genitals, often enough for my Lyft drivers to shrug and say, “Oh, yeah. That guy.” And yet, I had someone shout, “Boo!” at me, a barista roll her eyes telling me a cup of coffee would be “hard to drink with that mask on,” and a homeless woman point toward the Wells Fargo suggesting I would “feel better if you go up there and rob them.” Though my sister and I laugh about the time a man stumbled when he passed me on a hike, and the time another man tripped down a few stairs when he took a second look at me (Really, men are falling for me all over the place!), wearing a mask adds to my already robust social anxiety. Misconceptions make illness — invisible or otherwise — that much harder to battle. But I’m not about to let presumptuous comments stop me from living my life fully and safely. And neither should anyone else. I’ve settled on five ways I manage reactions from strangers. My hope is these strategies will work for others who have visible components to their disability. If you have some tips of your own, I’d love to hear from you! 1. Smile. It makes you feel better and seem more approachable. People can tell from my eyes when I’m smiling behind a mask. 2. Prepare a response. Have a short explanation for frequently asked questions so you aren’t caught off-gaurd when you get them. For instance, “I have a lung disease that makes me short of breath.” 3. Treat it as an educational opportunity. If you’re getting stares or questions about your disability, chances are, the person asking has never seen anyone like you. If the goal is to make illness a less taboo subject, we have to be open to sharing with outsiders. This is a chance to raise awareness for your condition. I also like to think that by taking the time to educate someone, I’m saving the next girl in a mask from dirty looks. 4. Simplify your response for children. Kids will ask the questions adults won’t, but you may need to revise your prepared response so they can understand. “I get sick easily,” works better than, “I had a heart-lung transplant and my immune system is suppressed so I won’t reject the donor organs.” 5. Laugh about it. Interactions with strangers are worth taking notes on. Whether you blog about them later or share them at cocktail parties, you’ll have stories to tell. No matter how painful the experience, I can always find a friend with whom to laugh about that clueless jerk. Now, if you’re the one staring, don’t feel bad. I know it’s not normal that I’m wearing a mask. But I do see you staring, so let’s discuss! On the bus one morning, a little girl was staring and pointing at me, asking her nanny why I was wearing a mask. “I don’t know why she’s wearing it,” her nanny said. “You should ask.” The woman’s response allowed me to explain, smile, and spread awareness to everyone in earshot. “THIS is how you raise kids without fear of diversity!” I wrote on Facebook that afternoon. My mask comes with a good story, and I’d love to satisfy your curiosity. Though aspects of a condition are sometimes physically visible, there’s always something beneath the surface, or rather, behind the mask. Originally published by Pulmonary Hypertension News. We want to hear your story. Become a Mighty contributor here .

What It Was Like Writing to My Organ Donor's 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 (PH), 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 Times, Sharlie’s Angels Blog and Bob’s New Heart Blog. This post was originally published by Pulmonary Hypertension News. We want to hear your story. Become a Mighty contributor here .

How Usage of Cosmetic Products Changed After Heart-Lung Transplant

“What’s with the nail file?” my sister asked, her eyes failing to conceal her amusement. Still grinding my nails down, and with two backup emery boards in my purse, I explained my new habit, one of many recent changes she bore witness to. Nail Files My nurses gave me a present when I was discharged after my heart-lung transplant. They included a set of nail files, explaining that filing my nails down was safer than using clippers, which could lead to open wounds and infection. I think this applies more to infants who could lose an entire toe to adult nail clippers. I’ve had no issue caring for the cuts I get while rock climbing (this makes me sound way more hardcore than I am). Still, I latched onto the idea and started bringing nail files everywhere. Filing helped pass time in waiting rooms and gave me something to do instead of building anxiety. Makeup Expired products can harbor bacteria, so I trashed lots of cosmetics after my transplant. A drug-aided identity crisis contributed to my desire to dispose of relics of my life before transplant. With the promise of three months living near the hospital, away from my friends and career, I struggled to imagine a future resembling my past. A year later, I still don’t own makeup. It doesn’t make sense to apply concealer right before I put on an N99 mask. I welcome any stranger to point out my lack of eyeliner instead of the far more obvious feature distinguishing me from my peers. Applying makeup can be fun and make me feel good, but newfound confidence and an appreciation for naturally pink lips, cheeks and fingernails makes me less interested. N99 respirator mask worn to protect against infections. Mupirocin ointment I didn’t trash Mupirocin, an ointment prescribed by an otorhinolaryngologist — a specialist concerned with diseases of the ear, nose and throat — to prevent nosebleeds caused by drying supplemental oxygen and high doses of blood-thinning Coumadin. One New Year’s Eve, I spent six hours bleeding into a trash can of tissues until it finally stopped. Other nights I went to an emergency room. I haven’t had a nosebleed since my transplant, but I still apply Mupirocin when dry environments like airplanes irritate my nose. Deodorant When my body was fighting pulmonary hypertension (PH), I hardly ever broke a sweat. In fact, I felt colder with exertion. Now, I look down in the middle of an exercise class 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 this had an impact, but it gave me a sense of control over my healing process. I apply it to all my scars (including scars from Broviac catheter replacements) and wish I had done so before my transplant. Applying the cream forces me to touch my scars and become more comfortable with them. Scars healing eight months after surgery. I’m fascinated by how the change from life with PH to life after transplant with chronic immunosuppression manifests in my life every day. What I lost, kept and gained in the transition was more tangible and far-reaching than I anticipated. This story was originally published on Pulmonary Hypertension News. We want to hear your story. Become a Mighty contributor here.

Facing Organ Rejection After Heart-Lung Transplant

When I started becoming more independent after my transplant, I thought it would be funny to try to go on dates coordinated through Tinder while wearing the filter mask I wear to prevent infection. “You can’t kiss me, and I don’t drink alcohol so I’d rather not meet at a bar, but let’s get some coffee and I’ll only wear a mask for part of the time.” For reasons unrelated to my mask and immunosuppressants, my love life has been fairly bleak lately. I’d like to say I’m single by choice, but I won’t pretend I haven’t gotten hurt. As I am still in a key period of the healing process from surgery, I have focused on avoiding stressful relationships, romantic or otherwise. Following each romantic rejection, I think, “Could be worse – at least it’s not organ rejection!” Well, Thursday’s bronchial biopsy came back with a diagnosis of Mild Acute Cellular Rejection (Grade A2). Acute cellular rejection, mediated by T lymphocyte recognition of foreign major histocompatibility complexes, commonly occurs in the first year after a heart-lung transplant. Basically this means my immune system is waking up to the fact that we, uh, switched out my heart and lungs for someone else’s and hoped it wouldn’t notice. It noticed. Last May my family and I were told I needed to be listed for a heart-lung transplant. The need for a transplant had been one of our greatest fears for 16 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, OK, 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 percent 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. “He who has a why to live, can bear almost any how.” – Friedrich Nietzsche Last summer, high doses of steroids had me convinced that life was not worth living. But I have lived so fully this past year as a result of the challenges and causes for celebration that my transplant brought. I now have mechanisms in place to remind me that pain is temporary and I can move past suffering. For my infusion today, I proudly wore the T-shirt from yesterday’s Touchstone Climbing Series competition at Mission Cliffs. I speed-walked the 1.6 miles to the gym about an hour after the results of my biopsy came in. My nurse coordinator was probably curious about the noise coming from the DJ and crowds in the background while she told me over the phone to check in at Admitting before going to the Infusion Center, but she didn’t say anything. I won’t recommend going rock-climbing with a healing sternum, and my last discussion with a doctor ended with him advising I avoid upper-body exercises for the first year after surgery. But indoor rock climbing makes me feel strong and happy. It’s something many of my friends enjoy and I love incorporating socializing with exercise because I’m all about multitasking. The gym is an environment where I can be heard through my mask (loud bars are tough) and instead of giving me dirty looks, other climbers ask me where I got my mask, assuming I am wearing it to avoid the chalk in the air or to train for high-altitude! I take safety seriously: my climbing partners include EMT’s, transplant and ICU nurses. I wear a filter mask the whole time, know my limits and am careful to avoid climbs with portions that would be dangerous to fall from. With my climbing harness double-backed, my belayer’s carabiner locked, Band-Aid’s and Neosporin in my bag, and constant awareness of my own mortality, “climbing on” is a risk worth taking – for me. Climbing is just one of my “why’s” to live – most of the other “why’s” are proper nouns, not verbs. I’m entering what may be a painful and pessimistic time knowing I will survive it and return to a new normal, living life with the people who make it full. This post originally appeared on Rose-Colored Mask. We want to hear your story. Become a Mighty contributor here.

Heart-Lung Transplant: Importance of Organ Donor Registration

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. In writing this, I’m going to try to focus 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 percent 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 percent 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 percent of the normal rate, a heartening (puns always intended) improvement from 15 percent recorded in July and 19 percent in November. Photo by Kathleen Sheffer At this point, I won’t bore you with details of the myriad issues I’ve had because my transplant team compared me to a population instead of seeing me as an individual. In the case of my gastroparesis, I was lucky to meet with a surgeon who gave me his email address and direct line instead of a slot in his operating room schedule, allowing time for my nerves to heal at their own rate. There is still so much to learn and that lack of certainty is stressful for the perfectionist in me who wants each step rendered in tidy capital letters with (Pilot G2 Ultra Fine) black ink on white paper. No need to study the image below in detail or analyze what it says about me that I saved my personal record of input, output, suppositories, enemas and bowel movements from days before hospital discharge, then photographed it 288 days later and published it online. Luckily (or unluckily for my neglected blog, jigsaw puzzles and oil paintings), now that I am feeling healthy, I can release some of my frustration with uncertainty by marching full speed ahead of my mom to greet fellow hikers with my tear-stained face and histrionic outbursts of “nobody knows anything!” Being one of 18 heart-lung transplant recipients in the U.S. last year means that my individual journey is statistically significant and will shape that of other recipients. Sure, it’s exhilarating to be special (my preferred term for complex), but that’s a lot of pressure, and I’d like to be a smaller portion of the data set. My mother, wiser and one-eighth of an inch shorter than I am (ignore her claims to the contrary), insists on recognizing the hope that comes with knowing future organ transplant recipients will help me as much as previous recipients have. So that future recipients get their second chance at life, and that medical advancements continue to improve our long-term care, I need your help in promoting donor registration. Not only does one’s family make the final decision, my research suggests it’s actually pretty difficult to die in a way that makes organ donation possible. Here’s a good place to start if you, too, are looking for some light reading on brain death. Even if you never become an organ donor, registering signals to physicians and patients like me that you support the work we are doing to increase the survival statistics and quality of life of transplant recipients. It only took me 32 seconds to repeat my registration at registerme.org. Please make sure you and your friends are registered. We want to hear your story. Become a Mighty contributor here.

Overcoming Obstacles and Living Life After a Heart-Lung Transplant

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 at The Moth, stood up when called, told a story on stage, and only shook for five minutes after I finished. When public speaking with pulmonary hypertension (PH), 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. 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 with my 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 PH. 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. 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. Follow this journey on Rose-Colored Mask. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: berdsigns

Learning to Slow Down, Practice Mindfulness After an Injury

Providers regularly ask whether I’ve fallen in the last 30 days. Last year a nurse insisted that everyone on the floor was considered a fall risk, handing me bright yellow slipper socks with tread on both sides and wrapping a band of the same color around my wrist. Since then my dismissal of this particular question has become increasingly emphatic. I take pride in my ability to extricate myself from lengths of oxygen tubing more gracefully than the average geriatric patient. Having procrastinated on blogging, today I can affirm I have not fallen in the last 30 days. It has been 47 days since my last fall, and oxygen tubing is inculpable. I tripped on uneven concrete walking in flip-flops intended to make changing into my indoor rock climbing shoes less of a hassle. I fractured a bone in my right palm and had to wear a splint. I felt particularly unfocused in the weeks leading up to my fall (probably a contributing factor in retrospect). Performing tasks with one hand instead of two slowed me down and made me more mindful. My morning breakfast routine involves a bowl, a box of Cheerios, a banana, a knife, a spoon and a quart of milk. I had to retrieve each item individually and arrange them on my dining room table for proper combination. While I’ve experienced astounding benefits from getting my body moving early and often, I’m finding it equally important to make time for stillness. Prednisone makes my hands shake, increases my anxiety and gives me bursts of manic energy. Unwilling to stop moving my feet, even with a camera in hand, I missed opportunities to capture beauty. Hours glued to Adobe Lightroom revealed shots marred by motion blur, compositions one permutation away from success. Photographer Minor White famously urges: “When you approach something to photograph it, first be still with yourself until the object of your attention affirms your presence. Then don’t leave until you have captured its essence.” Since I normally swing my camera body around in my right hand, I thought I’d have to stop taking photos entirely while my hand was splinted. Instead, I used my left hand to hold the camera and two right hand fingers for pressing buttons and turning dials. Each shot took time and effort, forcing me to pay attention to what I included in the frame. During a portrait session, I strive to make my client feel comfortable with me and my camera. A lot of people, myself included, are intimidated by a giant lens pointed straight at them. The moment I know I am being recorded, my face and limbs stop behaving naturally. If I can get my subject to relax and forget about the camera for a moment, I can take a photo that captures genuine emotions. In order for them to be calm in front of my lens, I need to be calm behind it. The factors that make me impatient in the aftermath of my operation are not all chemical. Long-term goal setting has always been tenuous in my chronically ill state. I’m struggling to convince myself that making the most of my second chance at life does not mean being in the greatest number of places in the shortest amount of time possible. While I don’t want to lose my reverence for the gift of life, I want to find stability and allow for relaxation. I do not have to accomplish everything today – just some of the things. The challenge is living every day like it’s my last without being completely panicked that it actually is my last. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Paul Sutherland.

Getting the Call for a Heart-Lung Transplant

The phone rang at 7:50 a.m. As soon as I heard the first words, I knew the man on the phone was calling to offer me organs. I eagerly confirmed I didn’t have any cold symptoms and hadn’t eaten since the night before. He told me they would have a bed ready for me at 10 a.m. By 8:40 a.m., we were in the car. We were breathless and jittery and convinced we’d forgotten the most important item on the packing list we never finished making. The drive to the hospital 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 30 it was consistently between 100-130 beats per minute. Once admitted, I leaned back in the bed that would transport me to the operating room 10 hours later. I closed my eyes, breathed steadily and relaxed. But still, the screen read 122 beats per minute. My heart couldn’t ignore the adrenaline pulsing through me — however much I tried to trick myself into staying calm. Somehow it knew this was our last hurrah: My heart was giving me every bit of strength it had left. I have a such a deep 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 the entire world had great lungs they squandered 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 10 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 learn 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 grief. 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 I forwarded my mom the informal list of final wishes I had written as a junior in college. It included 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 for 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. I waited hours in the glacial operating room, 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’d had enough of staring at the machine that would be trusted to keep me alive long enough for my surgeon to scrape out my chest cavity and sew in a new heart and set of lungs left behind just for me. I began rapidly sketching the scene, channeling my focus to record the details on a page that would be taken from me without warning. With useless worries welling up around me, I sought images of strength and wisdom. They 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 guardian angels. I sensed their presence and allowed their voices to echo through my head. The clock to my left read that it was time to start the infusion that would rob me of all awareness of the interventions done to my body. I knew I would have no memory of the hours that would pass slowly for my family and friends. I felt lucky to be the patient and have nothing left to do. Trusting my body to fight for me without the help of my mind, I embraced unconsciousness with confidence. We want to hear your story. Become a Mighty contributor here .

What Great Nurses Are Like and How They Help Patients

“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 lung transplant 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 12 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 20 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. We want to hear your story. Become a Mighty contributor here .