Waiting for Transplant

Transplanting tulips or irises feels bright springy earthy.  Transplanting vital organs feels dark and mysterious.  Vital.  Organs.

            Sharing my travels on this dark mysterious journey sometimes seems excessive, but I'm encouraged to write this by believing that some want to share my journey--some of the not-too-gruesome details.  Some have asked when.  Nobody knows.   

            Zeliha, my transplant team nurse, whom I've never met face to  face, has called with team orders  for me to stop taking Plavix.  When I've been off that blood thinner for a week (keeping my ten-month old coronary artery stent open) I can be "listed."

            Nevertheless, they continue retesting me.  Last Thursday I had to prove I could maintain same speed on my six-minute walk test that I had three weeks earlier.  At 8:30 am on Thursday, April 12, I meet with another thoracic surgeon and have more tests.

            "Listing" means being on an official national list of patients eligible for the organ needed.  The greater the need the higher you are on the list.  In order to be called for a transplant, you must be a fit with the donated organ in terms of size and compatibility of blood type.  Duke has a good record of short time (14-19 days average) from listing to the call.  Once I'm listed I must be glued to my cell phone. 

            Please send prayers and peace to the generous person who agreed to donate their organs upon death and to the family who make the decision in the midst of their grief.  

            When a donor organ that fits me becomes available, someone from Duke calls me to come to the hospital in no less than two hours.  Before then, a recovery team has been harvesting all usable organs for several hours.  This must be marvelously gratifying work--to bring out of someone's death several new lives for people who would die without those Vital Organs.  

            At Duke the transplant surgeon examines the lung thoroughly while I'm prepared for surgery (chest x-ray, blood tests, more anti-rejection drugs by IV).  The surgeon may not accept the lung, as happened to two people in my group two weeks ago.  They were sent home disappointed but hopeful of receiving another lung soon.  Both of those people have since received new lungs from one donor.

            Surgery takes about 5-9 hours.  We're told that patients have no memory of  anything the first 12-24 hours after surgery, but your family make view you in ICU.  

            Waking up from surgery, I may have a nose tube draining stomach content, chest tubes draining my lungs, other tubes draining other orifices, and a large IV catheter in my neck monitoring heart function.  I may have a breathing tube in my mouth or nose and thus be unable to speak.  I may be fed through the in the nose for days or weeks.

            When I've reached an acceptable recovery stage after surgery,  I'll be taken from ICU to a step-up room where the nurses will begin to get me out of bed standing and walking as soon as possible.  Average stay in hospital after surgery is about two weeks depending on complications.  Many get released but return when new complications arise.  Almost everyone can expect some rejection of the alien organ.

            You can contact Doris: 505 463 1679 or dorburk@hotmail.com.    

Greening of Carolina Hills

           Belated Equinox blessings.  For most of March, Doris and I have been dazzled with early spring bursting alive like a symphony of greens as we drive the swooping hills so reminiscent of the Ozarks.  First the brilliant yellow forsythia rush at me with memories of walking a mile to St Jerome  School in Rogers Park in April 1940s with sudden surprising hope. 

            Before that yellow weaves into green here in the Carolina hills red bud branches appear with their mauve delicacy deep in the forest.  These give way to big waxy white magnolias dipped in ruby and pear trees as white as communion dresses.  For a week now fresh dogwoods and pink flowering trees I can't identify dot the roads.

            Every chance we get we take drives in different directions.  Last Sunday we discovered UNC-Chapel Hill campus.  Yesterday we spent a couple of hours inside a Verizon store getting me a Droid with keyboard and internet access. I'm determined to figure out how to access email from my new larger heavier multi-task phone.

            If I'd had the transplant in March and if spring hadn't come early, I'd have missed all this luscious color and palate of greens.  Today I celebrate ten months since my heart attack when I'd always thought I'd pass a safe threshold with my heart healed enough to come off Plavix, the blood-thinning drug that's making my skin so fragile for bruises, so they can do surgery.   

            Waiting requires patience I've never really had.  Last week waiting to see the doctor in clinic took an hour in the outer waiting room and another two hours sitting on the uncomfortable metal chairs in the examining room.  If we'd known how long we'd wait, one of us could have stretched out on the examining table and taken a nap.  I took pulmonary function tests at 8 am, and we left the clinic about 12:30.  By then we were ravenous.  They want to do a few more tests.  I'm trying to be grateful for their caution.

            I continue my daily three hours at Duke Center for Living in order to keep up my muscular and aerobic strength in this Olympic-style prep for transplant.  Never have I pushed so hard.  

            One rare day the therapist leading the floor exercises started a brief meditation.  "Relax and deepen your breathing," she droned in that come into alpha state voice.  "Go to a place that makes you feel happy." 

            The old guy on the mat next to me growled faintly, "Hardee's."

            His eyes popped open as he rolled in my direction. "Did I say anything?" 

            "Hardee's," I growled faintly.

            "Oh no," he rolled back on his mat.  I don't even remember who he is, but I've been pondering Hardee's as a happy place ever since. 

            Please send healing calming energy to me and all who need it now.  I'm eager to cross the bridge into my new life so that I can give back to communities here by doing what I love--teaching, reviewing plays, writing my memoirs, performing, and joining in political action.  I'm also eager to be walking and breathing fresh air without needing oxygen, driving places on my own, getting my own groceries, and doing my fair share of everyday tasks.

Doris & RK on new/used recliner

Doris arrived eleven days ago . . .

. . . after rolling along a well-worn groove across New Mexico, Texas, and Oklahoma and on into Springfield, MO, where she spent two nights with our old friends Tim and Terry.  She then drove to St Louis to see family.  A week ago Wednesday Terry routed Doris on alternate highways to avoid dark skies and funnel clouds which hop-skipped across her planned path.  Her silver Honda CRV, packed with our desktop computer, 22 inch TV, folding bookcase, folding table, a case of wine, clothes for all seasons, and whatever we need for six months chugged across Missouri before cutting across short corners of Illinois, Indiana, Kentucky, West Virginia, and Virginia, and rolling into North Carolina. 

When she knocked on my door just after dark, I melted on the doorstep seeing her standing there in my forest after nine months of living with most of North America between us.  North Carolina reminds us of the Ozarks, spring tree frogs and all.

            Doris has transformed an over-furnished two bed/bath apartment into a cozy but more spacious den.  She can’t move walls, but she has moved a plethora of faux greenery and other ugly stuff into the depths of closets.  She persuaded Forest management to remove the clunky old cathode ray TV: it might leak fumes harmful to fragile lungs—so she says.  

With the monster cabinet banished to the small bedroom to store my memoir files, we can forage for the recliner of my dreams.  Our new friend Pete, partner of Gene, who’s a friend of Victoria’s from the Wisconsin in Scotland program, gives us some hot tips about second hand furniture shops.  (Victoria and I taught at Dalkeith outside Edinburgh where I also lived in spring 2005 and fall 2007.)  Doris finds a gently used grey leather recliner at Collectibles and makes friends with owner Blake, who gives us a discount and promises to pray for me.

On Doris’s first Friday in Durham, I suggested we celebrate my completing another week of exercise by discovering the Food Lion near the edge of my forest, one supermarket Lisa and I had not explored.   Zipping around on their motorized cart I filled my basket with necessaries and treats such as ice cream—two recycle bags full.

When Doris went to start the Jeep, it clicked and went black.  Battery?  I thought not, but Doris thought it worth a try. Triple A came to give us a battery jump.  No luck.  Thus I had to start my AAA request all over.  Finally a tow truck arrived.  The starter needs to be replaced.  Symbolic of my life?  Meanwhile, Doris must follow the Jeep and meet the mechanic who’s holding his shop open awaiting our arrival.  

Need I mention that it’s raining, our ice cream’s melting (minor problem), we need a ride home, and I’m always in danger of running out of oxygen (potential major problem).  Lisa’s old friend Karen comes to the rescue.  She follows the tow truck and takes us home.

Doris makes friends with Ken the mechanic and shop owner; he writes my name down for his church’s prayer list and gives us 20% discount because of my lung condition.  She’s charmed all the good ol’ boys.  I’ve noticed the slightest southern drawl creeping into some of Doris’s vowel sounds.    The following Tuesday Gene picks Doris up and takes her to Ken’s shop to pick up my Jeep while I’m at the Fitness Center.

I made another new friend here in Durham through an online memoir writers’ workshop Feb-March 2011 led by Lisa Dale Norton http://www.lisadalenorton.com. Diane, http://www.bydianedaniel.com/, journalist and travel writer, wrote about her husband becoming her wife, a piece of her forthcoming book.  Diane and Lina’s story appeared as the feature in the Sunday Raleigh News and Observer a couple of weeks ago.  I met Diane for coffee between getting my nose tube removed at the hospital and rushing off to lunch and exercise.  I look forward to talking more with her about memoir writing.  I’m immensely grateful for these new friends.

Yowch! Nose probe pulled from stomach through nose

Living room with monster TV and cabinet

March 11 Health Report

Results of tests continue to give me the green light toward transplant.  The most surprisingly unpleasant of these was the Esophageal Manometry with 24 hour ph probe.  A lovely woman named Pam inserted a tube up my nose (yowch!) and down into my stomach where it remained 24 hours.  When she and another technician suited up in what looked like Hazmat cover-ups, I guessed I was in for more than I’d bargained.  Dangling the probe tube in front of me, Pam looked me in the eye and said rather solemnly, “I only ask two things: ‘Don’t hit me, and don’t vomit in my face’.”   I’m happy to report no blows or projectile vomiting, and I survived the 24 hours.  Results indicate acid reflux and probable need for stomach wrap surgery after transplant. 

            Last week, along with the usual labs, x-rays, and pulmonary function tests with arterial blood gas draw, I saw Laurie Snyder, MD, a post-transplant critical care specialist, who said that I am close to being listed. They’re pleased with my progress at the Duke Center for Living (DCL).  I’ve met all the fitness goals. If all goes well, I’ll complete my 23 sessions at the end of next week.   I’m expected to continue in the graduate program up to transplant—same exercises but self-monitored.  (Duke has the most fit transplant patients in the country.  Every day is training for the Olympics.)

When the transplant team deems me ready, they’ll take me off Plavix and list me a week later.  That could happen around the Equinox.  After I’m on the official list, I’ll know my LAS (lung allocation score) based on how bad my lungs are, how likely I am to survive transplant surgery, and my specific needs (small body and lungs, A- blood).  For more information about the lung transplant program, staff, stages, and process go to http://www.dukehealth.org/services/transplants/programs/lung/

            Don’t ask if I’ve been writing memoirs.  I can barely find time for morning journal, a bit of reading, and the luxury of writing this entry.  This week I must get my tax documents and calculations to my tax accountant—at least before I’m “listed” for transplant.  I won’t have time or energy to think about memoir writing until weeks after transplant.  I hope I sail through transplant without the complications we’re learning about.

If you must reach me during that time, I may be able to read email at rkeefe66@msn.com .  You can also email Doris at dorburk@hotmail.com.