The Taste of Air Read online

  Had the world always been like this, this alive? I vowed never to forget this moment. I could feel every joy and sorrow and goodness and sadness and sweetness and beauty and hope and past and present and every perfect thing. Silence might allow this moment to last forever, which would still not be enough. It was like God had flipped on the switch of the world and everything is just now on. The “episode” gave ground and a million switches were turned on, my motherboard energized and euphoric. I know that such delicious intensity can not last, but I will remember. I will remember what it was like to be reborn. I took a deep breath, a pain-free breath of fresh air. Had air ever tasted this good? I looked back at DUKE Medical Center, and up to the sky. In the space between was my whole life.

  I am afraid that such delicious intensity cannot last, but I shall remember. I shall always remember what it was like to be reborn.

  Donor, we have become each other’s air,

  Karyn

  Dear Donor,

  When the soft swish of the automatic door at Duke closed, I knew another door was opening. A breeze washed over us, like the hands of you, our donor, caressing us. The air felt so good, so soft and comfortable. Karyn and I stared at each other for long moments, and in those moments, all of our time together and to be passed between us. A memory I wanted to keep whole and recall again and again. God, if that wonderful rush of the senses could be bottled, it would be worth a thousand times its weight in gold.

  I stared at Karyn and could not stop smiling; her smiles felt like sun on my face. The sun made her look tinged with gold, as if she was lit up from the inside. This girl was drunk on 100 per cent proof air. There is red through her cheeks, like mercury rising in an early summer thermometer over the North Carolina triangle. The gratitude she feels to you and DUKE is indescribable. A sigh of relief, one deep breath, says it all. I am standing very close to her, and my head is buzzing, like those many years ago when she had written her phone number on my binder cover.

  Karyn is on full blast and I along with everyone else am on mute. Seeing her in daylight is like switching the channel to high-definition. Karyn is tasting the sweetness of the spring air, and gulping it into her living, breathing heart-beating body of hers. Just like her playfulness with the IV tag, everything was new to her, which made it new for me. I feel like a teenager, flushed and eager for my first date. Can I click a magical stopwatch and exist in this moment forever? A butterfly alights nearby, and inside my heart I feel the lightest flutter in my chest, delicate little butterfly wings beating in sync with my own heartbeat. Now when I see butterflies I shall smile. Maybe this is what Karyn saw in the hospital.

  Donor, Karyn does nothing halfway. She found something fascinating in the tag, in every experience and her enthusiasm was infectious. When she listens, it is with a rapt attention, and an unwavering gaze. It is as if the world is suddenly in sharper focus with brighter colors. Karyn gave me leave to discard my insecurities and buoyed by her wake, every sensation was heightened.

  Every minute is right now and every minute lasts forever and ever. There are so many words, but no words for what I am feeling, for what I am seeing. If I was going to allow myself one cliché today, I’d have to say I felt as if the weight of the world had been lifted from my shoulders.

  For the first time in a very long time, I relaxed. I could feel the slow breathing of the earth beneath us. I tipped my face upwards towards the sun, feeling I had wings and could fly. Above me pigs are flying and beneath our feet hell is freezing over.

  My hand at once clasped hers, almost hungrily. I could feel her joy right away, the hair on my arms went straight out; she was like the electricity that lingers after a thunderstorm. I hugged her body to mine. There should be a bumper sticker, “When was the last time you hugged your lungs?” Kiss me, I thought, and she did, a kiss, gentle like we had all the time in the world.

  I am feasting on life, and thinking of you and your family.

  Thank you for the gift of your lungs,

  Richard

  Friday June 5th – D Day,

  The Longest Day, A Day Later

  The Other Side

  I loaded up the car with all our equipment, Karyn’s clothing, and the many photographs that had adorned the walls of her room. Hospital rooms are so sterile-looking with their bare, white-flat-painted walls. Some of us are just like that, dipped in flat, while some of us get dipped in gloss or satin, but every once in a while, you find someone like Karyn who’s iridescent and when you do, nothing ever will compare. On the walls, I had placed photos of our granddaughter Avah, our children, our dogs, and Karyn and me. Photos to encourage, to inspire, to move Karyn through the other side.

  I drove to Walgreen’s to have all the prescriptions filled, a very busy Friday night and a wait of over an hour for Karyn’s medicines and drugs. Friday night at Walgreen’s was very crowded and all the waiting chairs were taken. Jaws dropped when they saw our load of drugs and paraphernalia, which overflowed the shopping cart.

  Then back to the Residence Inn. I unloaded the car, and brought everything in to our home. Karyn sat on the couch resting. I assembled the pieces of the IV tower together, and readied the feed for her nightly dinner. I gathered up the pills and worked to unify the lists from the post-transplant coordinator, the diabetic pharmacist, and the doctors. I was running around chasing my tail, flop sweat on my face. Finally after setting up the GJ tube, I drove to Wendy’s down the road for dinner. I ordered and paid for my food and then drove home. My whelm was so over’d, that I forgot my order. Peanut butter and jelly. Just what the doctor ordered. The hours, instead of inching along, seemed almost too short.

  We meet tomorrow afternoon with rehab at the Center for Living to set up a program for recovery. The doctors have prescribed all the right medications; it is up to Karyn to do the healing

  And for you history buffs, the first insulin shot that I gave Karyn tonight is now the answer to the Shot-Heard Round the World. How many times did I say, I’m sorry?

  When I go to sleep, I say one of my special prayers, which I have been saying for years. God bless you Karyn. I love you Karyn. You are my air.

  Saturday June 6th

  7:00 AM—Karyn’s day starts. It should be restful days after a most invasive surgery but for post-lung transplant patients, there is no rest for the airs. Karyn takes her temperature first thing in the morning, and then weighs herself. Blood pressure must be checked thirty minutes later.

  8:00 AM—Prednisone, baby aspirin, multi-vitamin, Citracal plus D, Protonix, Septra (with food), Nystatin, Buspar. Before breakfast, blood glucose must be checked (the first of four checks during the day), and then breakfast (which is a thickened fruit drink). Karyn also can take by mouth such foods as applesauce, mashed potatoes, and scrambled eggs.

  10:00 AM—Karyn checks her Pulmonary Function Test—the first of two times taking anti-rejection drug, cyclosporine. Before lunch, check blood glucose.

  We went for a walk around the complex. Each lap is about a ¼ mile. Karyn did almost a half-mile.

  12:00 PM—Rinse mouth with Nystatin, to prevent thrush

  2:00 PM—Appointment at DUKE’s Center for Living: rehab evaluation, so Karyn can start rehab Monday. She passed all the tests with strength equal on both right and left sides. She also rode the bike for 15 minutes. Rehab on Monday starts at 12:30 and runs to 4:30. Rehab is Monday through Friday

  5:00 PM—More pills—Citracal plus D, Valcyte (with food), and Nystatin. Before dinner, check blood pressure, and glucose level.

  Karyn’s feeding schedule is to take via the GJ tube 960ml of “food” at a rate of 80ml per hour. 12 hours of being hooked up. Yum. No seconds.

  10:00 PM—More pills—Protonix, Nystatin, Imuran, Pravachol, and Buspar. Check temperature. Last check of blood glucose.

  11:00 PM—Last check of insulin level, 24 hour shot given.

  Info
rmation on weight, blood pressure, temperature, PFT’s, insulin, are all recorded.

  It should be that after surgery, your schedule is easy, you sleep a lot, get some strength back, and then add more and more, as you recover. The challenging course for Karyn starts now. Rehab begins Monday. There are also clinic days, where she has to balance everything in her schedule, plus rehab at the Center for Living. First clinic day is Wednesday.

  Karyn had her hair washed and blown out at the hair salon this afternoon at 5:15. The birds have left their nest. BTW, this was the first call she had me make when we received the final word that she would be discharged from the hospital on Friday. That’s a very good sign.

  Karyn’s schedule

  Wake-Up

  Thermometer—temperature in morning before eating or showering

  Scale—weigh first thing in morning after toilet

  Thirty Minutes Later (30 minutes after wake-up)

  Blood Pressure Cuff

  8:00 AM

  Prednisone—Take 4 5mg tabs—DO NOT TAKE on clinic days until blood drawn

  Baby aspirin—Take 1 81mg tab HOLD FOR 5 days before lung biopsies

  Multi-vitamin—Take 1 tablet

  Citracal plus D—Take 2 315mg tabs

  Protonix—Take 1 40 mg

  Septra (with food)—Take one tablet

  Nystatin—Take 1 teaspoonful (5 ml) (Wait 15 minutes to eat and brush)

  Buspar—Take 1 5mg tab

  Before Breakfast

  Check blood glucose (insulin checked before each meal and before bedtime)

  After Breakfast—check PFT’s daily

  10:00 AM

  Cyclosporine—Take 1 100mg cap and 2 25mg caps

  Before Lunch

  Check blood glucose

  12:00 PM—Noon

  Nystatin—swish and swallow

  5:00 PM

  Citracal plus D—Take 2 315mg tabs

  Valcyte—Take 2 450mg tabs(time flexible—take with food)

  Nystatin

  Before Dinner

  Blood Pressure Cuff

  Check Glucose Level

  10:00 PM

  Cyclosporine—Take 1 150mg

  Protonix—Take 1 40 mg tab

  Nystatin—1 teaspoonful 5 ml

  Imuran—Take 2 50mg tabs

  Pravachol—Take 1 40 mg tab

  Before Bedtime

  Check blood glucose level

  Monday, June 8th

  Rehab – First Session

  The Other Side

  Dear Donor,

  What will it be like when things get back to their pre-LAM normal? Will there be one day when all of a sudden Karyn is fully healed? Of course not.

  But at some point, Karyn should start to feel like her old self, or mostly like her old self before. Before LAM.

  Karyn is at her first session of rehab. Her muscles are waking up, especially her back muscles and they are not happy. Her muscles atrophied during her hospital stay. It will take a while for the muscles to wake up. The doctors say recovery takes anywhere from four to eight weeks.

  I believe there will come a morning when she will wake up and feel strong. When she feels lousy, with her bloated stomach, feet, and ankles, when the pain electrifies her back, I think about that morning. It can’t come soon enough. I put that morning into her hip pocket of her workout clothes to cheer her up. Karyn pretty much cheers herself up, and the moments of sadness are very, very few.

  Slowly, Donor, Karyn is becoming Karyn. Simple pleasures like a shower (but she cannot bend down to shave her legs). The steps are tiny, and they pale in comparison to where Karyn saw herself at this point, but she simply modifies her expectations.

  Day Won,

  Richard

  February 4, 2009

  I Am a Glass Half-Full

  This Side

  Dear Diary,

  People often ask how come I’m always smiling and up. People think that if I might be dying, I would not be positive. Well, I think that’s just me. None of us know when the end is coming, but it comes for us all. So making the best of today is important to me.

  My son once pointed out to me that when someone would ask how I was, I would respond with a low-key “I’m okay.” My son suggested that if I say “I’m great” I would believe it. He was so right. It helped me live each day to my fullest.

  Diary, as you know, I have my good days and my bad days. I have cried, been angry, felt alone beyond words. I have my ups and downs. So even though I have those rotten, whiney, I’m feeling sorry for myself days, I know that with or without LAM every day is not a Disney movie with singing birds and frolicking animals.

  Anyone, diary, who has a chronic disease and is positive twenty-four hours a day, just does not have both oars in the water. In a perfect world we would all go around thinking only Pollyanna thoughts, but in a perfect world, there would not be LAM or lung disease. Hey, I know I have baggage. We all do. I just have a U-Haul truck.

  I remind people that none of us knows what tomorrow holds. Those good people working on 9-11 had no idea that this was their last day. I remind everyone of that, including myself. So just live, live today and then tomorrow, and then there will be, God willing, a yesterday.

  I believe that life will really find a way, that I will find a way. I cannot choose what obstacles I will face in life, but I always have the choice in how I deal with them. Sometimes, it is so hard to not let the seemingly endless flow of bad news overwhelm me and make me believe the worst. But even in the darkest of the darkest, when things seem the bleakest, I hold onto my optimism, even if it is a small piece, even if it is just a tiny spark, otherwise I would just give up. I strive, I really do, to be optimistic and uplifted by each day and its possibilities, but I also know there is the very real possibility of some dark days ahead. I do thank God I had a yesterday and hope for another tomorrow. Light, life, love, strength, the will to live, enhanced at each dawn. I feel each day, like when the music is on in the car, on full blast, playing one of my favorite songs, and I push down the accelerator just to do life at full speed. When you feel so hungry for life, you want it all, all at once, now. You want to drink it all up, breathe it all up, every last drop.

  I know some things just cannot be changed, some things are inevitable, and then perhaps the only thing that can be changed is me, and my attitude toward such things. There are times when I have no control over what is happening at that moment, but I do have control over how to react to it.

  Maybe there was a why and maybe not. It just doesn’t matter. Looking for an answer to” why me” is futile, but there are answers to the “what now.”

  I do recognize the dangers and risks. The beast of LAM is lurking nearby all the time and I prepare as best I can for it. I just do not assume things will turn out well, but I do believe, oh, do I believe, that I can make things turn out well. I do not let the darkness overshadow the light. I like to think that my negative feelings, the whininess, when they come, are merely guests who will visit and leave. Optimism is so dang important—it’s too bad doctors cannot give those that do not have it a big booster shot of it.

  I am a glass-half-full kind of person, so I can deal with whatever life dishes out, whether it’s half full or half empty. Without my bad days, the good ones would not be oh so sweet. I am forever optimistic that tomorrow will contain that moment of joy—that made it all worthwhile getting up. How I love to say tomorrow.

  I am a cup half full. I do not think about the what-ifs. I think about the possibilities. I drive a car every day and many more people die from automobile accidents each day than LAM, so would I stop driving? Heck no. Cuz it gets me to the next place. Just like my attitudes do.

  But now, Dear Diary, you’re thinking I’m not real. In denial. No, you have seen those awfu
l bad days, tears rolling down my face and prayers to God to help me get beyond those moments, and to give me another day. In Judaism, we thank God when we wake, for bringing our soul back to us each morning. I also thank God for allowing me to breathe one more day.

  I wonder who first spoke my mantra, yesterday is the past, tomorrow is the future, today is the present, that’s why it is called a gift.

  I am a glass half full. Top it off with optimism.

  Good night diary and thanks for listening,

  Karyn

  Tuesday, June 9th

  Rehab – Center for Living

  The Other Side

  Dear Donor,

  A short distance from the hospital is the DUKE Center for Living, a large workout facility, where Karyn must complete her 23 sessions of rehab.

  Each day I drive to rehab, I drop her off in the Center’s traffic circle. Cars are backed up, dropping off heart and lung people; all these people getting the most out of their physical conditions. No two alike. To me, it is like an elementary school drop-off zone, a hug and go zone, where I hand Karyn her lunch box (thermos with thickened juice and a soft banana).

  Have a good day at school. Play nice with the other kids.

  Yesterday was Karyn’s first day at rehab. Rehab is Monday through Friday from 12:30 to 3:30, and if transplant classes, to 4:30. Prior to doing the six minute walk (before transplant, it took Karyn ten minutes to do the six minute walk), Karyn had an EKG and when finished with the walk, another EKG. She walked three laps (Thirteen laps or so make a mile), then walked for another 3 minutes. Karyn also did a half hour of floor exercises, weight exercises for the legs (including stair walking) and 20 minutes on the Nu-Step bike. All the time, her vitals are being monitored. Her pulse/ox read 97.