Pre-Op

On Transparency

Cackling, my classmates point at my face. “You look like a ghost!” one sneers. Confused, with no access to a mirror, I ignore their taunting and turn back to my work. When I feel the nausea creeping through me, I know something is wrong. Instinctively, I reach down to feel the tubing through the fabric of my shirt. Wet. Uh-oh.

Later, I would learn that I turned ghost-white when my intravenous Flolan wasn’t getting through my Broviac catheter to my heart. That afternoon, way back in second grade, a connection in my tubing had broken, and medication was leaking out of it.

The drug has a six-minute half-life, so I start to feel the effects of withdrawals quickly. My mom rushes to the school to replace the tubing, our house conveniently – and intentionally – located only a couple blocks away. We sit in an empty classroom until I start to feel better.

The event set off a lifelong tradition of transparency about my condition. My mom and I gave presentations about pulmonary hypertension to my class every year after. We explained how the disease affected me, and what they could do to help in the event of an emergency – namely, inform someone who could get ahold of my parents. In middle school, I began presenting to all six of my classes myself. The process was intimidating, but always warranted a positive response.

I’ve been trying unsuccessfully to think of a time when educating my peers paid off – when one of my classmates really helped me out. Perhaps they never did – I knew better than anyone what I needed and how to get it. But these presentations took a lot of stress off me. They transformed my illness from an invisible secret to a topic of discussion. My candor eliminated any imagined need to hide my pump. I took the questions all at once, and told my classmates to ask my mom if they had more.

November is PH Awareness month. Raising awareness is a form of survival for me. In college, I needed my roommates to know about PH. Of course, it was pretty conspicuous when I pulled out a tray of supplies and began using needles and syringes to prepare the medication for my pump. Between midnight trips to emergency rooms and frequent deliveries of oxygen tanks, my disease inevitably factored into my living situation. Now that I am immunosuppressed to protect my transplanted organs, it’s critical that my friends understand my susceptibility to infection so they won’t come over to my house when they’re sick, or take bites of my food.

When an inebriated young man with a charming European accent blocks my path at a party to ask me about my mask, I politely explain the reason. Honestly, I’m taken aback that he cares about my flimsy filter mask at a party where a space helmet and inflatable T-Rex costume are universally accepted. The young man insists, to his companions’ dismay, that he can’t understand what I’m saying. He starts repeating, “I can’t hear you. I just asked you your name.” Friends come to my rescue and echo my explanation. They encircle us, trying to protect me and keep me moving toward the rest of our group. Gratitude for my friends eclipses my annoyance with the man’s drunken behavior.

Involving my friends in my disease strengthens our bond. They’ve shown up for early morning fundraisers, and visited me in the hospital. Reactions to my medical emergencies have come along way from mocking my ghost-like appearance.

“Team Kathleen” represented at San Francisco’s 02 Breathe Walk one rainy morning in March, 2016.


Originally published by Pulmonary Hypertension News.

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Pre-Op

On Being Transparent

Cackling, my classmates point at my face. “You look like a ghost!” one sneers. Confused, with no access to a mirror, I ignore their taunting and turn back to my work. When I feel the nausea creeping through me, I know something is wrong. Instinctively, I reach down to feel the tubing through the fabric of my shirt. Wet. Uh-oh.

Later, I would learn that I turned ghost-white whenever my intravenous Flolan wasn’t getting through my Broviac catheter to my heart. That afternoon, way back in second grade, a connection in my tubing broke and the medication was leaking out. The drug has a six-minute half-life, so I start feeling the effects of withdrawal quickly. My mom rushes to the school to replace the tubing, our house conveniently — and intentionally — only a couple blocks away. We sit in an empty classroom until I start to feel better.

That event set off a lifelong habit of transparency about my condition. My mom and I gave presentations about pulmonary hypertension to my class every year thereafter. We explained how the disease affected me, and what classmates could do to help in the event of an emergency — namely, inform someone who could get ahold of my parents. In middle school, I began presenting to all six of my classes myself. The process was intimidating, but always warranted a positive response.

I’ve been trying, unsuccessfully, to think of a time when educating my peers paid off — when one of my classmates really helped me out. Perhaps they never did — I knew better than anyone what I needed and how to get it. But these presentations took a lot of stress off me. They transformed my illness from an invisible secret to a topic of discussion. My candor eliminated any imagined need to hide my pump. I took the questions all at once, and told my classmates to ask my mom if they had more.

November is PH Awareness Month. Raising awareness is a form of survival for me. In college, I needed my roommates to know about PH. Of course, it was pretty conspicuous when I pulled out a tray of supplies and began using needles and syringes to prepare the medication for my pump. Between midnight trips to emergency rooms and frequent deliveries of oxygen tanks, my disease inevitably factored into my living situation.

Now that I am immunosuppressed to protect my transplanted organs, it’s critical that my friends understand my susceptibility to infection so they won’t come over to my house when they’re sick, or take bites of my food.

When an inebriated young man with a charming European accent blocks my path at a party to ask me about my mask, I politely explain the reason. Honestly, I’m taken aback that he cares about my flimsy filter mask at a party where a space helmet and inflatable T-Rex costume are universally accepted. The young man insists, to his companions’ dismay, that he can’t understand what I’m saying. He starts repeating, “I can’t hear you. I just asked you your name.” Friends come to my rescue and echo my explanation. They encircle us, trying to protect me and keep me moving toward the rest of our group. Gratitude for my friends eclipses my annoyance with the man’s drunken behavior.

Involving my friends in my disease strengthens our bond. They’ve shown up for early-morning-walk-in-the-rain fundraisers (pictured above) and visited me in the hospital. Reactions to my medical emergencies have come along way from mocking my ghost-like appearance.


Originally published by Pulmonary Hypertension News. (Still writing my weekly column!)

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Recovery

Bringing Illness Out Into the Open

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 Coumadin, for carrying so many bags (a backpack for my IV Flolan 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 Flolan.

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.

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Recovery

Not a Costume: Wearing Masks After Transplant

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 strangers delighted in rasping, “I am your father,” in passing. 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.”

I want to be able to write that after all that I went through – all the far more humiliating moments I had while hospitalized, with slowly draining chest tubes and constipation from a slowly emptying stomach – I am unfazed by comments from clueless strangers. But I felt robbed of normalcy each time. I told myself the experience would help me practice empathy, and that every tactless comment was fodder for my memoir.

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. I prefer going to gyms over parties because I don’t have to shout for people to hear me. Some people think I’m wearing an elevation training mask, or sensitive to the loose chalk that permeates rock climbing gyms. My mask may hide my smile at parties, but it also hides the unbecoming facial expressions I make when I’m struggling on a bouldering problem.

Now that my transplanted heart and lungs are a bit older (and a bit more mine), I wear masks less and less. I’m on lower doses of immunosuppressants and therefore less prone to infection, so I mainly wear masks on public transportation, in hospitals, and at the gym. I notice how different I feel leaving my house without fear of people stopping or staring at me, ordering my coffee or interacting with a salesperson without a physical barrier between us.

Last week underscored the reason I wear masks. They are one of few forms of protection I have in a life replete with risk. All the stares in the world are worth the peace of mind that I am protecting my lungs from infection. My P100 and N99 masks filter particles in the air, and have proved an effective way to train me to stop touching my face. With wildfires severely impacting air quality throughout California, and especially the Bay Area where I live, I’ve seen dozens of other people wearing masks around the city. I went from being an outsider to being a paragon of preparedness.

With the holiday falling on a Monday, I was in the thick of the Halloween festivities when I took my dog for a walk in the Castro neighborhood Sunday night. “I like your costume!” someone hooted. I grumbled thanks, but later it occurred to me that I should have said “I like yours, too,” since we were both in street clothes. I wanted so badly to pass for normal and efface myself from public view. My mask made that impossible, and rightfully so, as masks were not the norm.

This October, I’m not the only one wearing a filter mask. I wish deadly fires had not sparked this trend toward normalization, but seeing more education about types of masks and their applications gives me hope for refuting the misconceptions I’ve experienced. Once again, I find silver linings in the midst of disaster: learned empathy and, as always, writing material.


Originally published by Pulmonary Hypertension News.

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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.

Attached to a Machine IV

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.

attached-to-a-machine-i.jpg

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.

KronoFive I

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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