The Taste of Air

by Richard Schad

  She looks so good. Finally okay to say it. “You look so good.” Her fingertips were pink and her face looked flushed. The highlight of my morning was my wife’s glance over to my side of the bed and her hand reaching up and rubbing my shoulder. Love conquers all. Her breathing is so steady and natural that for a moment, I think, it’s hard to believe there is anything wrong with her.

  Her eyes, so trusting as she looked at me, for some type of reassurance that I would always protect her. I serve as a healing balm and help her stay calm and centered; underneath I was a paddleball, a thin rubber band held me together and I was ready to snap. I am not sure I understood how hard it would really be, like standing at the edge of a cliff, thinking it was just a short drop until I started to fall.

  I am using my own BiPAP this morning to force out all those things that are eating away at me, never forgetting how precious the air we share among all of us.

  Another long wait in ICU. My sister, Pam, and I just saw Karyn and she was resting comfortably. Karyn was vented last night, so she cannot speak to us. A ventilator breathing tube connected to a machine snaked down inside her, creating a strong smell, antiseptic air, and machines beeped. One machine lets off random unpredictable pings like sonar checking for enemy submarines. Her CO2 levels remain high. Many different teams, thoracic, pulmonary, hematology, are doing workups as staff hones in on the cause of her episode.

  The GJ feeding tube procedure was delayed by radiology as Karyn’s blood levels are working so hard, and 2 units will be given this morning. The platelet drop is also being checked. The major anti-rejection drug, Prograf, is being strongly looked at, as the cause of the episode, and a possible replacement, Cyclosporine, is being considered. These are among the primary medicines that trick the body into thinking the new lungs are Karyn’s.

  The trach is back in play, and there is the strong likelihood that Karyn will be trach’ed which is a short surgical procedure done at bedside so that the venting can be done through the trachea. It will make it easier for Karyn to sit and begin walking. Sitting up and walking are very, very important for your lungs to gain strength. The trach will also make it easier for the bronchostomies to be done. The trach is near the top of Karyn’s Hate list. I know from before surgery, the trach (and the GJ tube) are not wanted by her. Not wanted? Hated is a third cousin to the actual word.

  Karyn’s left side remains weak. She did move her toes and feet up and down this morning. Her left arm remains weak but she was able to move her left hand and arm without looking at them. The best thing today is Karyn is at rest and showing no signs of pain.

  It is so very hard to see your loved one, your partner, your best friend, in pain. I hope to God, you, our donor, did not suffer in pain. I wish I could switch places with my wife. I love her more than oxygen. Karyn is my hero for knowing that the other side would be dangerously hard, but never fearing the jump. Here’s to better days ahead, and the lifting of the daze.

  Day 6—Karyn had a busy day today. Every time I looked out the ICU door, I saw Karyn on the gurney coming and going. The surgeon gave me the option of the trach, the sort of option that really isn’t an option at all. Her intubinator was removed, she was trach’d, given two pints of blood, had her platelets checked, had her GJ tube put in, another MRA, and a bronch. The trach brooch is Tiffany silver, not the cheap plastic kind. Maybe one day Karyn will look at the scar on her neck, like it’s a tattoo; she can look at it, and say there is a history here, a story to be told.

  Pam and I just visited Karyn and she was alert. I can now sense that Karyn is in there. Her eyes no longer haunted; she is watching everything with hawkish intensity. Karyn searches my face like I have the answers to everything. Pam and I showed her photos of the family, and when she was shown pictures of her granddaughter, Avah (who we call Avah Lava), her smile was sooooo big. Maybe we call her Avah Lava because Karyn’s mouth exploded like a volcano into a gigantic smile. The nurse was “quizzing” Karyn on what month, who is the President and other questions, and Karyn mouthed all the correct answers.

  Karyn now knows she has had a transplant and smiled a smile only second to Avah, when I said she was breathing on room air, and her oxygen level was at 93%. I asked “Karyn Unplugged” for her first dance, and another smile laced her lips. My brain avalanched to my heart.

  Pam visited again with one of our fellow lung people—a woman whose husband was also transplanted last weekend. Karyn beamed at seeing her buddy, and I think also felt, that even though she remains in intensive care other people who are not immediate family, can visit. Relief, and more conversation mouthed.

  Day 7—Ragged clouds fringed the bluest of skies this morning, and a sweet breeze blew, rustling the leaves in the trees. Visiting Karyn today is like breaking through the clouds and the fog. It was as if the sun came right into our room, clearing the fog from her brain.

  Did I tell you her eyes are beautiful? Her lovely peanut butter eyes sparkle brighter with traces of tears of joy. Her eyes scan the room, back and forth, looking for blips on her radar; that another procedure is in the offing.

  We have met this morning with the social worker, nurse, chief pulmonologist, and anesthesiologist—their chorus reaffirms our thoughts that Karyn’s internal needle has re-centered, and we are enjoying the coming back of the smooth sounds. Karyn’s heartbeat, her lung beat, your lung beat, pulsing, remembering, awakening. Donor, I can hear you sigh.

  I hate to sound like a Hallmark card, but I just like being with her. She is as comfortable to me as shoes without laces. Sitting and waiting for my next visit, hearing every single tick of the clock. Together, I feel our hearts beat as one. Yesterday, I leaned my cheek against her temple, inhaling her scent as if I could fill myself with it.

  Karyn will be weaned off the vent slowly, over the next day or two, and we will meet with all the different therapy teams to work on improving her strength. Pam and I gave her a grease board this morning to write on, and the first missive was, “When will the trach be removed?” Her mouthing went from sleepy to irritation faster than a Ferrari. Vroom. Vroom. Vroom. If her tongue could have come out of her mouth then, she would have been a viper ready to strike. I can smell her fury.

  For the trach, I was dressed down like I was a little toddler about to put my fingers in an electrical socket. Karyn’s face looked like a kid who did not get what she wanted for Christmas.

  Karyn can still not drink water, and her mouth is so dry, like she had wandered in the Sahara Desert for weeks on end.

  Each day, I can see the lights being turned back on, one by one. As bright as the sun, my Karyn is back. Letters are being replaced, and the daze is becoming days.

  What will it be like when Karyn is no longer tired of being tired? What will it be like to not feel like you are walking through mud? What will it be like to not walk the halls like she’s sweeping the floors, a human Swiffer? What will it be like to again take a shower? What will it be like to go for a walk hand-in-hand along with our pooches? What will it be like to take a drink of water and eat solid foods? What will it be like to hold and truly play with Avah? What will it be like?

  I can’t stop looking at Karyn breathing, her nose naked, without a cannula and tubing. Karyn stares at me so hard that I am afraid I will stop breathing. I realized how much a part of me she is.

  This may seem like an insignificant moment, watching Karyn breathe, inhaling through the nostrils, exhaling through the mouth, she feeling the taste and tickle of her own life. But to me this is my world, and Karyn is my universe. You have given Karyn life, and this shall be Karyn’s life and Karyn is alive, and she is my life. When I was fourteen or so, my Grandpa Harmon teased me that he would give me a miniature abacus for my birthday. I looked at him puzzled and Grandpa told me, it’s the little things that count. You are so right Grandpa. Sometimes the little things are so big. God bless you donor.

  Day 8—Karyn had the IV tree r
emoved from the room. The femoral artery plug has been removed. With assistance, she moved from the bed to a reclining chair. Her goal is to sit in the chair for three hours, then move back to the bed. The ventilator will not be used this evening, and if not used for 48 hours, Karyn will step-down from ICU to a regular hospital room. Step-down? Sounds like a step-up. Karyn took six steps to the chair. She is much stronger than the staff thought. Who would have thought the big accomplishment of Karyn’s day would be sitting in a chair?

  I knew yesterday that Karyn was back both physically and mentally. Her strength, ever-increasing on her left side, and she can move her toes back and forth, effortlessly.

  One of the doctors on call walked by her cubicle very early this morning on his rounds, and as he passed, He said “Good Morning” as he walked with a purpose down the ICU hall to another cubicle. Karyn waved back to him with her left arm, smiled, and said “Good morning.” The doctor reached the end cubicle, and then walked back and asked Karyn, if she had waved at him. Karyn picked up her left arm, and said, “I guess I did.” Later in the day, she could move her left leg.

  Mentally, Karyn was back. Pam and I received our marching orders last night. Karyn’s sentences spilled, falling over each other, and her words swept across me like a cool breeze. We were told in military-clipped fashion, that we needed to pick up a large fruit basket from the grocery store for the wonderful staff at Duke, a thank-you card, her glasses, magazines, camera, slippers! I sighed so heavily that papers on the nurses’ stand across the room wavered. How wonderful to hear her ticking off items. God that felt good. Who knew that receiving barking orders from one’s wife could be so heavenly? Her words linger like soft warm air that touches me. The voice was as familiar and as warm as curling up in my bed at night.

  Karyn kisses my hand and it sends a spark through me. Her kiss is soft and electric at the same time. Her fingers stroke the inside of my wrists and I burst into flames. Karyn’s breath is even now and mine falls in step with her. If anyone had been lost, it was me and I could feel nothing but gratitude at having been found.

  My sister knew things were on the way to better times, and left this afternoon for her home. She may be my sis, but she’s no sissy.

  As evening came, I told Karyn I cannot wait for each morning, to see what progress has been made. In the darkness, I take one of her hands and squeeze it. She squeezes back lightly. I love her hands, they are just the right size. I grabbed that moment and held it close to me, like an amulet, the warmth of her hand. Her eyes are round and brown and fierce and determined. She looked into my eyes, and I looked into hers. I saw so much there. I always would. My eyes would be a hundred years old and still want to keep looking and looking and looking at her.

  I told her I so miss being by her side at night, to press our palms together, holding our hands together as one, as we drift off to sleep. Listening to her breathing as she falls asleep, her snoring is a lullaby to me, that she is alive and breathing.

  My heart skipped a beat as I floated to the car. The sun is setting and the last pink crayon slashes of light color the sky behind DUKE. The last clinging tendrils of sunlight are slowly disintegrating into the evening sky. Each night as I go to sleep, and right before I fall asleep, I say Good Night Karyn and God Bless You. I say thank you, to you, our donor and May God Bless You. I take a deep breath and exhale a tornado.

  I give special thanks to God. Who says that God never gives you more than you can handle? God, we need to talk some more.

  Tonight I shall have the deepest, most sound sleep of my life, to sleep without dreams and without ever turning over. My thoughts as I fall asleep are soothing like waves lapping at the shore. I was lost and now I am found.

  From the bottom of my lungs,

  Richard

  INTO THE SECOND WEEK

  The Other Side

  Dear Donor,

  Monday May 25, 2009

  Karyn was awakened at 3:30 AM for a bath, a bronch and a walk—aren’t there laws against that?

  She moseyed about 200 feet in the wee morning hours, then tuckered out, sat in the recliner by her bed for three hours. Two more chest tubes removed and two drains to go.

  By tomorrow morning, Karyn will be off the dreaded vent for more than 48 hours and step-down may happen at that time. Accent on the “may happen.”

  In the afternoon, I was sitting in the ICU waiting room, decorated (and that is generous) like early Motel 6, but would look much better with the lights off. Just outside the door, stood Karyn, holding the two handles of the high boy Swedish walker. She invited me to join the caravan, and off we went, doing a circle of the ICU outside hallways, walking over 350 feet! Blood pressure was low, but not scary low, and no dizziness. Karyn was spent from her work-out, but full of smiles, spending the rest of the day in bed grabbing some much-needed sleep.

  Tuesday, May 26, 2009

  Karyn’s CO2 levels rose to 65 last night, and she had to be re-vented from 1:00 AM to 6:00 AM. She sat in the chair for the full five hours. Blood pressure remains low. Karyn went for a walk with the high boy walker, and reached 350 feet. I had the important job in the entourage; walking behind with a chair, in case she needed to sit down. (To leave the hospital from step-down, you must walk 5280 feet, a mile).

  Karyn may take a swallow test tomorrow, to see if she can eat regular food (Is hospital food regular?) She may also require an MRI later today.

  Wednesday May 27th

  The sky outside Karyn’s hospital room is griddled gray and orange, and a light wind moves through the trees outside the ICU window, so that the trees seem to dance. She is resting now after her 10:00 AM 800 foot walk. 3 laps and exhaustion takes her into sleep. Last night the evil CO2 levels again rose dangerously to 65, and Karyn was re-vented for 4 hours. The vent makes sleep hard, alarms going off, and breathing for her at a different pace, contracting harder against her stomach.

  Maybe one day soon, she will wake up feeling gooder as one Southern gentleman spoke of in the ICU waiting room this morning. An easy day, is like turning on the lights, one by one.

  No complaints from Karyn, other than if they try to re-vent her tonight, she’ll run away.

  Thursday May 28th

  Last night, while cramped in the ICU waiting room, longing for the space of a Southwest Airline seat, I looked up and Karyn was outside the door, ready to go for a walk. I joined the parade with her two attendants, and we walked for almost ten feet, when a chest tube came out. Out. O. U. T. That shouldn’t happen. The parade marched back to ICU, without me in tow, and I was back in the economy section waiting an hour and a half to again see Karyn. Surgery had been set for later that night to reattach the tube.

  Going back home last night wondering whether Karyn would be vented for the evening, Wondering how Karyn would be in the morning.

  Early Friday morning the 29th, the sky was a brilliant blue and endless. Why does everything have a different slant to it in the morning? Mornings are hopeful. Nights, especially the deepest part of the night after I awake suddenly, seem to intensify troubles and worries. Everything small become large, everything bad becomes worse

  This morning, in the shower lathering up and watching bubbles rise from my hands, one bobbles as it floats upwards. I imagined it growing larger and larger filling up the shower until Glinda the Good Witch of the North would come forth from the filmy shell in a quick pop to grant my every wish. To make everything perfect. Perfect lungs, perfect Karyn. Perfect.

  Rushing to get dressed and I can’t wait to get into ICU at 9, the good witching hour, when visiting hours start. Karyn looks great this morning. No vent last night, even though her CO2 level climbed to 60, but finally the staff agreed, to use the “look test”—if she looked good, leave her be. Her bicarbonate level in her blood and the alkalinity of her blood is compensating for the higher CO2 level. No vent, did you hear that? No vent—let me vent
my feelings. Thank you Glinda acting on behalf of God.

  I want smooth even roads without bumps, but I guess God just likes to go off-roading

  Karyn walked 1200 feet this morning. I listened so closely to her breathing that I began breathing in the same rhythm. In, fill your lungs completely and hold it. Exhale entirely and push out every drop of air with your diaphragm. A few stops—no pain while walking—no alarms going off on the blood pressure meter as her BP stays up

  Rumor has it Karyn will step down either later this evening or tomorrow and no, I did not start the rumor

  Mornings do look better.

  Friday May 29th

  Step down day—room 3316! Karyn has been moved to a regular room. T 3000 wing has the tiniest hospital rooms ever. How I long for the wide open spaces of the ICU waiting room. The noise and activity level on the wing are greatly reduced from the ICU. Tomorrow I will decorate her room with posters I made pre-transplant. Posters of photos of the family and our dogs, which are family. We will make the—little-room-that-could homey.

  Karyn has a weariness in her voice and lines beneath her eyes and nose that stretch to her ears seem sharper and deeper. Her eyes bounce around like popcorn, seeing everything in the hall and in her room, all at one time.

  Sitting in my chair by the bed for minutes at a time I felt removed from it all as though I was watching it from afar, and envying the man sitting with the woman. My breath coming out in steady streams like car exhaust

  Days in which time has been measured in a haphazard fashion; days in which unreal and unpredictable things have become common. Yesterday a new chest tube placed into Karyn, where one had fallen out. How does a chest tube fall out? X rays showed the new tube needed to be moved—twice—chest tube moves, x rays, repositioning—new catheter tube placed in upper right lung where there is a small pneumo-thorax. But as Karyn says, “Hey 98% of my lungs work fine.” A far cry from both lungs, equaling 8% pre-transplant. As we prepare for the last and third walk of the day, instead an X Ray.