Nothing will stop me,
Karyn
Sunday
Dear Diary,
Going through so much anxiety and anger at not being listed, and this week had been incredibly hard breathing. When my breathing gets hard, I question if my disease has worsened, or is it allergies or am I merely sick? So two days ago the answer came. I am sick and need antibiotics. I am doing much better today and Rich and I walked the nearby mall. Hopefully soon, I will be listed.
Getting my breath (if I can call it that) back,
Karyn
Tuesday
Dear Diary,
I AM LISTED! I AM LISTED! Can you see my smile in writing that sentence? The average wait time for lungs is 19 days. Yes, I know that is an average. So let us hope that God finds the right lungs for me very soon. Let’s also pray for the Donor and the Donor’s family, who will make this incredible decision as they save a life and lose their loved one.
Bye for now,
Karyn
We Are All In This Together and We Are Here To Do Our Best
Both Sides
DUKE requires 23 full days of rehab in order to be listed and DUKE also requires 23 full days post-transplant of rehab, at the Center for Living.
Before transplant, Karyn suffered from shortness of breath, and increased oxygen needs. Her activity level, if I can call it that, had decreased to almost nothing. Her respiratory, postural, trunk, arm, and leg muscles had wasted away. There was fear and anxiety due to breathlessness. There was cardiovascular lack of condition.
The lung transplant improves shortness of breath and oxygen need, but only a comprehensive rehabilitation program can improve the other issues. There just is no substitute for exercise and activity.
Rehabilitation not only improves cardiopulmonary function and quality of life, but also counteracts some of the side effects of medication. The lungs are the body’s oxygenator and what exercise does is train your muscles to use the oxygen that is available most efficiently.
The Center for Living rehabilitation program strengthened her body in preparation for specific tasks and activities. Before transplant, the simple act had become not so simple. Just picking up something from the floor was a challenge because bending had been compromised by the over-crowded conditions in her chest caused by the expansion of her diseased lungs. End-stage lung disease made the easiest of tasks seem like the stairs to the top of the Statue of Liberty.
The Center provided a specialized and personalized exercise program which prepared Karyn for her surgery and recovery. The sessions were every Monday through Friday, from 12:30 to 3:30, and several times each week at transplant school for an hour lecture after work-outs.
Getting the most out of the least prepared Karyn for the transplant and, I truly believe, saved her life after the “stroke-like episode.”
May 4, 2009
Dear Diary,
I feel myself winning back my body. The workouts at the CFL may not be the workouts you see on the Biggest Loser, but I and all the others at the Center are all winners.
I trudge up the hill to the Center each day. Just opening the heavy door takes so much of my strength. Sometimes, I just wait for someone to come outside. God, thank you, someone is leaving and opening the door for me. I feel like I am suffocating and cannot take another step. I check in and shamble over to the milk crates on the table, pulling out my clipboard and pencil. I swap out my oxygen tank for the Big “E” green monster cylinder critter. I use a walker/seat combination for stabilization and for my oxygen anchor. One day on the other side I will talk and not push my tank burden in front of me.
One of the trainers goes over questions with me, checking my blood pressure, O2 level, pain number, and weight. Even though all of us at the CFL have a lung disease, we are all different. Each disease is different and even people with the same disease are at different places. No two people experience the same thing or are on the same level. I try my darndest not to compare myself to others and what they can do. (But I do anyway).
After the trainer finishes his or her questions, I shuffle over to the center gym floor. I lie on the mat and do arm and leg raises. I strap on leg weights, which weigh from 1to 3 pounds. These weights and the therapy bands provide resistance during leg lifts and ankle rotations. I use dumb bells to increase my arm strength. The trainer guides me through a solid non-stop forty-five minute workout.
The trainers rotate and teach different regimens. Each of the trainers is very helpful. They are knowledgeable and determined to help me have a successful operation and recovery. No pain, no gain. I must be making huge gains. The trainers watch us, watching without hovering, helping with equipment, giving me lots of smiles and encouragement. Courage is wrapped in Encouragement.
We are taught breathing guidance, diaphragmatic breathing. Breathe in through your nose for 2 counts and exhale for 4 counts through pursed lips. I place my hand just below my rib cage and past my belly button. I make my hand rise when I inhale deeply through my nose and then drop it, when I exhale through those pursed lips. Mouth breathers use auxiliary muscles in the neck and shoulders and invite shallow breathing, which can lead to shortness of breath.
It feels like I work one solid hour. We turn our heads left and right, up and down, raise our trembling arms and legs, and march while lying on our back with our feet up in the air, raising our butts.
After floor exercises and stretching our muscles we get a short break, and the snack in my lunch box is waiting.
Then walking, weights and the bike.
We pre-transplant people are easy to spot. When we walk, we are just so busy concentrating on walking, there is little or no talk. Just trying to breathe is hard work, and we do not have the breath to chat with those sitting or walking next to us. The post-transplant people, do they EVER stop talking? I wonder how many words I have saved up, when I will be unencumbered by shortness of breath?
All of us at CFL are each other’s biggest fans and supporters. I don’t think I ever walked a lap without seeing a smiling face. I also save up some of my breath to encourage others. It takes just a moment of time, but I know it can provide all the difference for someone struggling. As Richard’s grandma always said, we all got here on a different ship, but we are all in the same boat.
I save the rest of my talking for when break time comes, for the before and the after, when my O2 comes back to earth.
After the short break, we are rotated to a different station. Weights today, bikes tomorrow, and reverse.
I have my lap counting rope, a cord of about 30 little plastic colored beads. Trainers set a timer for a 20 minute walk, except on Tuesday and Thursday and then, ugh, we have to walk 30 minutes. We sound like a steam engine, with our oxygen pumping. Each time I walk a lap, I move a bead. I feel like my body is getting that second wind. My eyes itch and my airways close up—who has violated the no perfume rule in the CFL? Certain synthetic chemicals compromise lungs and airways. I gasp for more oxygen. My throat swells and I have an uncontrolled coughing attack.
I move onto the weights. On alternate days, I work upper body and lower body. Physical therapy has evaluated my ability, and developed a weight plan for me to gradually build my strength up. There are four or five different machines for the upper body and other challenges such as lifting hand weights and squats. I stretch my muscles in my legs. I look around and notice that no two plans are alike. The workout is a process, a balance for my condition. The process, always changing, to get the most out of me, so I will be at my strongest when I have the surgery.
Next comes the bikes, which are actually called Nu-Step. I am seated in a recumbent position, just like sitting in a car. My feet are extended onto foot pads. Instead of rotating my feet in a circular motion like on a bicycle, I use stepping motions to apply pressure on the steps. The bike measures my distance, level of resistance, watt
s produced, and steps taken. Some people, I see, use the two handles to strengthen their arms and assist with the force requirements. Want me to use my feet only? Look ma, no hands. No hands to help supply some of the energy needed for rotations. My legs do all the work. What level am I on? For sure, the level will be increased tomorrow or the next day by the ever-watchful trainer.
Once or twice a week, after the workouts, there is an hour lecture. Transplant School shows us the many different phases of what we will see, hear, feel, encounter, as well as some of the more difficult subjects to bear, like what could go wrong, tubes stuck in our bellies, diabetes and shots, speech therapy, caregivers support, medicines and pills, stomach wrap, and the list continues. I soak up all the information. The more Richard and I know, the more we won’t be scared or startled when a nurse or doctor tells us what is next.
I swap out my oxygen tanks, throw my dirty towels in the bin, gather up my lunchbox, and make my way outside through the heavy door to my awaiting carriage for the ride home, and much-needed sleep. The door feels a little lighter. I am the biggest winner.
Can’t keep my eyes open,
Karyn.
June 5, 2009
On The Other Side
Der Tag
The morning we leave the hospital, Karyn idles in a chair several feet from the IV pole adjacent to her bed. There is a service tag dangling from the side of the pole. Karyn blows out air aimed directly at the tag, and the tag shakes.
A wild-west shoot-out, with Karyn’s breath her six gun, and the bad guy, the tag, falls back. A little kid’s giggles cross her face, and she covers her mouth. Karyn is again four years old, and just blew out all the candles on her cake. What a big girl I am. Her present to both of us is being able to blow out. Before transplant, Karyn could not blow out a single candle, even if the candle was right in front of her mouth. Her own life was on a short wick.
The sparkle has returned to her eyes, her eyes dancing around the room. I reveled in this moment watching my wife breathe, seeing the healthy color of her skin, hearing the sound of her breath in and out, tasting her air, and listening to her lungs purr like a well-loved kitten.
Pure delight washes across her face. Her brown eyes were holding mine. I could hear the grin in her voice. “Watch this.” “Look at me.” “Look at what I can do.” “Watch!” Karyn flashes me a smile, a smile brighter than an amusement park at night. More giggles. Her words curl around my heart and my mind dances a jig. Her laughter tinkles like chimes in the wind. I could see an imprint of every pleasing smile that had ever stretched across her lips in that deep laugh. I laughed with her, but mostly I wanted to watch her laugh, and a small part of me wanted to be Karyn at that moment.
Her smile is so warm, chocolate is melting in the vending machines down the hall. The most exquisite smile I have ever seen; I felt a shot of love so powerful it hurt my chest. Warmth crept up my body, landed somewhere near its center. A thousand suns rise from my chest. Karyn is breathing life in.
She flashes me the most adorable grin ever. I exult in the moment and my breath comes out like it had been trapped.
When Karyn took a break from blowing at the tag, I felt like we were the only two people in the world. I love you Karyn, more than I can tell you, more than I even realized until I understood I could lose you. I felt my heart swell with tenderness and love and an awesome thankfulness to the God who not only heard my prayers but also answered them. When you love someone, you can see all their mess and their brokenness, and you love them anyway. Just maybe, maybe, it makes you love them even more. I felt the truth as deeply as anything I have ever felt, and I could barely breathe.
Karyn blows at the tag over and over and over, “Hey, look at this, look what I can do.” The poor tag unfurls the white flag. Karyn again, “Watch me, watch this.” She giggles another smile that transforms her face and it seems somehow spotlighted from a heavenly light. Her smile is like a ray of sunlight, the kind that pierces clouds at an angle and makes you think about heaven.
I am buzzing from her smile, and being so close to her I feel light-headed and invincible, drunk on love. Can air be addictive? Even the paint is being charmed off the wall. I leaned my cheek against her temple, inhaling her scent as if I could fill myself with it.
Karyn is breathing air right in front of my face, exulting in her new lungs and the sheer joy of breathing. This is a miracle.
The air she is breathing, I am breathing. We are breathing it together, breathing life in. Thank you donor. I feel like I am sitting in the sunshine on a cold day, and I feel warmth coming from the barking of her laughter. She leans in so that her head is close to mine. I can taste her breath when she talks. Her words flow as naturally as her breath. Her eyes light up again and again, and her cheeks crinkle. Karyn is happier than a bird with a French fry.
Ah, this is one of those moments in life, when you know you are having one of those moments in life. My cheeks are wet and I do not even remembering starting to cry. Karyn is peeling back all the years, and I see the young girl at camp with lips of white-pink neon gloss. I felt the planet stop rotating for just the tiniest fraction of a second to pay tribute.
I take a deep breath in, a deep clear breath, and I hold it. I let it out. I do it again and again and again and again, the way one plays their favorite song, that they just cannot get enough of. Never gets old, the feeling, the rush of fresh oxygen spilling into my lungs and into my heart, racing through my blood vessels to feed me the life that I once so longed for. Each breath my system craves. Each exhalation my body rejoices. My heart and lungs, my body and soul, feel like new lovers that cannot get enough of one another.
A nurse watching Karyn blow at the tag, had never heard of LAM. She had read up on it, reading the information on the LAM Foundations’ website, thelamfoundation.org, and asked many questions about the disease. When Karyn explained just how rare the disease is, the nurse commented, “You must feel really unlucky.” Karyn replied, “No, I actually feel lucky—through LAM, I have met so many Lammies who are my sisters—I am the lucky one.” Karyn does make me feel like she’s the lucky one. LAM and lung disease are definitely not a gift, but to see the good through the bad, this is a gift.
We walked the halls of step-down one last time. Karyn leaned, entwined in my arm, as her balance was a little unsteady. As we walked out the door of her room to the long hall, my arms roped around her waist, I felt as-if we were newly married and heard in my head, a voice that proclaimed ladies and gentlemen, for the first time anywhere, I present to you, Mr. and Mrs. Richard Schad. I present to you Karyn Schad, who takes my breath away.
The universe hangs on a kiss, exists in the hold of a kiss. Richard, you may now kiss the bride. A kiss I could relive again and again, stored away in my memory like a DVD I can call up anytime, pause, rewind, fast forward and then slow motion to that kiss.
I could feel people’s eyes on me, feel them watching our every move, and not in a bad way, like they were making fun of me or something, but like I was Cinderella walking up the steps in a fairy tale with a prince.
The rest of the day blurs together. We are inundated by staff, one person after another after another after another came to sign off our leaving the hospital. Doctors and staff and pharmacists and psychologists, bumping into each other, “Oh I’ll just come back.” The stream of people turned into a flood. The psychologist came to check on us, the pharmacist came with prescriptions and changes in medications, the diabetic nurse came to check on us and make sure I knew how to give the shots, the oxygen company who also provides cleaning supplies for the trach came to show me how to clean the trach and to re-vent Karyn if necessary, and another person came to show how to set-up and use the IV tower for GJ tube feedings, and clean it. Phew! “Did I say, phew!”
Finally, the pulmonologist came and removed the last two drainage bulbs from Karyn and she was unchained.
The life game o
f Tag, You’re It. Ollie, Ollie Oxygen Free.
Leaving Hospital,
Friday June 5th – Tag You’re It
The Other Side
Dear Donor,
For the first time, I stepped outside the hospital after my double lung transplant. It was late afternoon, a beautiful late spring day, but beautiful is inadequate. The electricity in the air had changed, and I could smell the ions dancing. The colors that day were turned up, as if I had been seeing with blurred vision before. The scents in the air were almost over-powering—growing flowers, traffic rush, food smells. Even the time of day; late afternoon smells different from early morning or evening. I felt I had hit a pause button on life.
Everything was more three-dimensional, more alive than anything seen under the flat fluorescent indoor lighting of the hospital. I felt like I had been wearing ear plugs and they had fallen out and everything that was muffled is now so clear and vibrant. The sounds rushed at me. Voices, no longer filtered or muffled by hospital walls, had a different ring outside. I heard a dog bark, a horn honk, a child yell, shoes hitting pavement and multiple conversations going on around me. Even walking felt different than it had in hospital hallways.
There was a light breeze and I could feel my skin. My fingertips were pink and not gun-metal gray and my face felt flushed. My face had gone from tombstone gray to a serious scarlet. How wonderful the breeze smelled—it smelled like sunshine—like sunshine and freshly-mowed grass. I could not stop breathing it, filling my lungs again and again with the sweetest smell I’d ever tasted. The sky was the color of blue porcelain, and the air had texture, as it touched my face, my arms, and my new lungs. After ten years on supplemental oxygen, I can breathe on my own. The sun, it warmed me from the outside in. I felt like a flower blossoming in the spring, coming back to life. I turned my face to the sun and the shadows fell behind me.
The Taste of Air Page 8