Not Done Yet: A Tale of Transformation Through Transplant Surgery

Not Done Yet

A Tale of Transformation Through Transplant Surgery

Sharon Lamhut Willen

Asheville, North Carolina

Not Done Yet: A Tale of Transformation Through Transplantation

Sharon Lamhut Willen

Copyright 2014 by Sharon Lamhut Willen

Smashwords Edition

Smashwords Edition License Notes

Thank you for downloading this ebook. This book remains the copyrighted property of the author, and may not be redistributed to others for commercial or non-commercial purposes. The only exception is brief quotations in printed reviews or for use in programs encouraging organ donation, as long as permission is requested from the author. If you enjoy this book, please encourage your friends to download their own copy from their favorite authorized retailer. Thank you for your support.

Disclaimer: Any legal and healthcare information contained in this book is offered as a resource and not intended as a substitute for the advice of qualified professionals.

The reader should regularly consult a physician in matters relating to his/her health and particularly with respect to any symptoms that may require diagnosis or medical attention.

The author and publisher have made every effort to ensure that all content in this book was correct at press time, including Internet addresses. However, the inclusion of Internet addresses does not endorse them or vouch for their content or permanence.

Events, locales, and conversations in this narrative have been recreated from the author’s memories and notes. In order to maintain the anonymity of people involved, in most cases, they are identified by first names or last initials only.

Dedication

To all the generous organ donors and their families who make miracles possible,

and to all the courageous caregivers who step up afterward.

May your numbers increase and the blessings you’ve given fall gently back upon you.

For Michael, a miracle everyday.

Preface

I feel very blessed to have survived end stage liver disease by receiving a liver transplant. I began writing this book because it’s a story of miracles, and I wanted to help others realize that miracles still exist. As I continued to write, I realized it’s also the story of how our minds can work against us—when we rely on familiar assumptions and comfortable habits—and how flexible and creative we can be when we need to. Part One-Before includes anecdotes that serve as examples of both. In the Resources at the end of the book you’ll find practical tips I believe may be of use to anyone in this stage of a serious health crisis. In Part Two-After, you'll read the story of how I found out about my donor. You’ll also see why the insights I gained during the post-op experience were as transformative for my character as the transplant operation itself was for my physical being. Reading Part Three will help you understand why I say, I'm not done yet (and neither are you.)

I hope you discover something worthwhile in each part of this book and will be inspired to trust that you are worthy of miracles and are yourself a miracle worth sharing.

***

Prologue

I won’t take credit for saving my own life, though my friend Barbara likes to say I did. I know I fought hard and made a lot of good decisions. But there’s no denying that a helluva lot of what happened could only have been managed by divine intervention. Clearly the devil started out with the advantage. I was fifty-nine years old and diagnosed with end stage cirrhosis of the liver. There is no known cure for this disease, except organ transplantation, and the odds against that are staggering. Based on the latest statistics available from the Centers for Disease Control and Prevention and the American Liver Foundation, Approximately 31,000 people in the United States die each year from cirrhosis.

-Every 10 minutes another person is added to the national organ transplant waiting list.

-There are currently more than 108,000 individuals waiting for organs.

-Approximately 18 people die daily while waiting for life-saving organs.

-Success rates for vital organ transplants average between 80 and 90 percent.

-Only one in four people will receive a lifesaving organ in time.

In April 2006, though, it wasn’t simply my health that was careening out of control. A cascade of terrible changes—physical, marital, and emotional—seemed to put my life suddenly on the skids. With the clarity of hindsight I can see that, in fact, symptoms of distress had been trying to reveal themselves for quite some time. I just wasn’t paying attention. Likewise, all the resources I needed not simply to stay alive, but literally to begin again in a brand new way were well within reach. All I had to do was listen, look, and ask.

This is a story of miracles—big and small, but never insignificant—being told by a spiritual realist. I am no one special, and I hope once you have finished, you will conclude as I have that you don’t have to be special to be worthy of miracles.

I think of this story as a tale of continuous beginnings, because I know now that there was no one point in time when the miracles began, and they are ongoing, in my life and yours. It’s up to us to energize them with our attention, that’s all.

Spirit Brings Me Home

Sunday night, November 19, after 10 p.m. my husband Michael and I finally parked in front of my folks’ house on Long Island at the end of an arduous two-day journey from Asheville. I’d fought hard to stay remarkably upbeat during the previous few months of more and more serious health challenges and ever-decreasing strength. That night I had to admit I was about at the end of my rope. All I could do was sit there while Mike and my dad moved the entire contents of our overpacked Subaru into the living room. There would be time to sort it all out on Monday after my first radiotherapy procedure for supposed liver cancer.

On that Sunday evening I didn’t even have the energy to put a pretend smile on my face to calm the fears I knew my parents must be experiencing when they looked at my emaciated and deformed presence. I just sat by the dining room table feeling the rush of cold air every time Mom held the storm door open to let Mike in with a carton or Dad in with a suitcase. Some part of my consciousness hovered over my head, looking down on my body—an inert part of an otherwise busy scene. I saw myself as the empty shell I’d become, like the old folks I used to avoid noticing when I visited Grandma in the nursing home. People just marking time until their time ends.

Our plan was for me to settle in under my parents’ care while Mike alternately worked at his job, hunted for an affordable Manhattan sublet for the unknown duration of our stay, and returned to Asheville to temporarily suspend our life there—at least through the winter, we expected.

Instead, the very next morning, Monday, November 20, at 4 a.m. only two weeks after my evaluation as a potential liver transplant candidate at New York-Presbyterian Hospital’s Center for Liver Disease and Transplantation, and only six hours after we’d arrived in New York, Mike’s cell phone played its jazzy little tune on the tiny table in the small room that used to be my brother’s. Every inch of my body froze as Michael answered groggily.

Hello?

I held my breath as he spoke in short bursts, OK. Yes, we’re here in Bellmore. Clearly it was not a wrong number or cell phone prankster.

It’s about a 45-minute drive at this hour, I think. Yes, I understand. OK. Where do we go when we get there?

Michael, who had been gazing intently at some vague horizon in order to make sure every detail was impacting his sleep-deprived gray matter, finally looked in my direction. The caller was Dr. Renz. His associate, Dr. Guarrera, was retrieving a type B liver they believed would be a match to replace my diseased and failing transmission. It was to be brought to the hospital within moments.

I think Michael and I were more together in that moment than ever before or ever since. Amazed. Elated. Frightened. Uncertain how to proceed. Only one thing was clear; we needed to move fast. How ironic, since everything about my liver disease had progressed so slowly until the last four months, the last two weeks, the last six hours.

There was still no sign of dawn outside. Just as he had parted the waters for Moses and the Israelites, God was allowing Michael and me to make this journey, possibly our last, before the New York rush hour got cranking. I reminded myself that sometimes a call to come to the hospital for transplantation can be a false alarm. A great deal can go wrong that might result in being sent back home to wait again. The organ could be the wrong size. It might have a defect that deems it an unacceptable risk. It might take too long in transport to the hospital or spend too much time in the prep process. I did my best to stay calm and look forward to a positive outcome.

I took a shower and washed my hair, which turned out to be a good choice. From our hodgepodge of personal goods, I collected a nightgown, bathrobe, my favorite flaxseed pillow, my journal, a crossword puzzle book, and the cozy lap blanket that had kept me comfortable across many road miles the past year. We took a big bag of my current prescriptions, though I had no real idea what was ahead or what I would need.

Once we had put microwaved hot tea into our carry-cups, Mike and I knocked on my parents’ bedroom door together to say our good-byes. As is their personal style, they were amazingly composed. We all told one another not to worry. Mike made promises to keep them informed. We crossed the lawn and got into the car. So began our most important trip.

We hadn’t had time to make any dry runs west from Long Island to the East River and across and up the island of Manhattan to the hospital on the Upper West Side. Do you know where you’re going, Mike? I asked.

Yes, but I’m going to call Neil (a lifelong New Yorker) just to double check the last part of the directions. He doesn’t live too far from there. I’ll wake him; he’ll understand.

The Long Island Expressway is accurately known as the world’s longest parking lot, but that morning we sailed through, no accidents, and no traffic to delay us. Mike was like a man taking his wife to the hospital to deliver a first child. In spite of help from his friend Neil, he made one wrong turn and we found ourselves looking up at the sign atop the hospital to our left as we headed south on the highway to who knew where the next exit would be. Me? Once in the car I had gone into a surprising Zen zone. I knew that everything would either work out for the best or it wouldn’t. I was powerless at that point to do anything more on my own behalf. The best I could do was reassure Michael.

Don’t worry. We’ll just get off at the next exit and take a side street to Broadway. We can take Broadway back up to 168th. We’ll get there. Just focus on the road. We’re here already, Sweetheart. Breathe.

He made it. We made it. The liver made it.

That part of the Presbyterian Hospital complex where Mike had been told to report was incredibly hushed at 5 a.m. He and I sat holding hands silently in a typical waiting room, as if we were there for the cancer-containment radiation I was supposed to begin receiving that very day. I broke the silence to encourage him not to wait by himself through the operation, if it was to happen.

For a typical transplant, the donor liver is transported from one hospital to another in a cooled saltwater (saline) solution that preserves the organ for up to eight hours. The necessary tests are then done to determine if there’s a match between donor and recipient. The new liver is removed from the deceased donor through a surgical cut in the upper abdomen. It is placed into the patient who needs the liver and attached to the blood vessels and bile ducts. The recipient will often need a large amount of blood through a transfusion. The operation may take upwards of twelve hours.

I made Michael promise he would let someone sit through the vigil with him. He could call our younger son, Douglas, or Neil. He agreed, and I prayed that he wouldn’t wait it out alone, and that he would be OK. No matter what happened.

I remember there was some hospital protocol to negotiate—a few final x-rays and scans and some internal staff push-pull about where my pre-op would take place. Just before they took me to the OR in a wheelchair, Mike and I exchanged our final expressions of love.

He pulled me close, though gently, and kissed me saying, You’re going to do fine.

I smiled and told him I knew I would. We were both being brave for each other. Then I pulled out the pack of Beeman’s gum I’d bought the previous July in an old-timey sweet shop during one of my last independent activities, a field trip with girlfriends to the annual Storytelling Festival in Jonesboro, Tennessee.

One of Mike’s all time favorite movies is The Right Stuff, the story of the original Mercury 7 astronauts and their journey through the fledgling NASA program and eventually into space. Every time test pilot Chuck Yeager climbed into a cockpit for another dangerous attempt to make history by breaking the sound barrier, he’d hand a pack of Beeman’s to his ground support technician. Each time he repeated the same superstitious phrase, Here, hold this for me till I get back, OK?

I didn’t need to say anything as I handed the Beeman’s to Mike, nodded, and waved.

I am suspended from disbelief by the power of the love of those I have known over the years—I cannot give up because people everywhere are offering prayers on my behalf.

Though the pre-op had included insertion of a port for intravenous into my arm, I was surprised that I was not attached to any tubes until after I had moved from the wheelchair and onto the operating table on my own steam. It was not as cold or bright in there as I expected. Again it was a hushed environment. What was for me such a momentous occasion, was just another day on the job.

I don’t know who was who on the operating team, other than Dr. James Guarrera, the most competent and pleasant surgeon I’d ever encountered to that date or since. Luckily, there was hardly time to wonder what all those nurses and technicians were doing around me or what the sounds of metal and cloth moving about meant. No time to become anxious. I just rested there on the white draped surface of the operating table enjoying a huge sense of relief that T-day was finally here. I was immensely confident that these professionals knew what they were doing. All I had to do was have faith.

I don’t remember going under the anesthesia—I have no conscious memory of getting woozy or falling asleep. Instead, as I took several relaxing meditation breaths, I had a vision that delivered me into the deepest, most peaceful state I’ve ever experienced.

I am lying in God’s palm. There is a large white angel behind me, comforting me with her soft, white wings. We are both under a halo of light created by infinite circles of visible and invisible well wishers. They are all holding hands around us. I close my eyes with confidence in my well-coordinated transplant team.

***

Part One–Before

Dying and Denying

In December 2005, it would be fair to say I was not a happy camper. I was debating the future of my twenty-three year marriage, and I thought the job I had once reveled in was killing me. Literally killing me. I desperately needed a change; anything that would relieve the internal strife that was causing me to struggle through even an ordinary day.

In the past whenever I felt a similar unrest, I had been able to dream up visions of new happiness, set plans, and manifest those dreams. That’s how I’d come to be living near Asheville, in the beautiful mountains of Western North Carolina, with Michael, the man I had long considered my soul mate, and was six years into an interesting, seemingly meaningful position in economic development at the Asheville Area Chamber of Commerce. But as 2005 was drawing to a close I felt too tired to do anything but deal with daily demands. I was uncomfortable with the status quo and yearned for a magical elixir to reignite my ability to dream big. Something was eating me alive, and I couldn’t put my finger on exactly what it was.

The dilemma in my marriage was not a crisis of love. I loved Michael as much as I had when I first described him in journal entries at age twenty-something (before we even met), but the reality at that time was that our lifestyle had become so comfortable, so routine, so separate, I wondered why we bothered to stay together and whether that kind of marriage, the kind I suppose most people enjoy or simply accept, was enough for me.

And my job? Well, changes in personnel and politics, both within and outside the Chamber of Commerce, had diminished my role and created roadblocks that were making it difficult to effectively help my clients throughout the community. There was much stress and very little satisfaction in the new busywork I was being asked to do. And strangely, though the work was less complex, it seemed more and more difficult for me to concentrate and complete projects, even those that should have been easy. When I left my office each evening I was so depleted of physical and emotional energy that I had nothing left for Michael or myself.

When 2006 replaced 2005 on calendars and checkbooks, I took my first steps toward uncovering a new path, jotting down job search fantasies in my journal. Changing jobs was something I’d done many times in my career, and seemed less daunting than confronting Michael with dissatisfaction I could hardly put into words. Given the quality reputation and contacts I had developed in my six years with the Chamber, I felt confident about finding worthwhile employment, even in the limited Asheville job market. I was betting that a career change would add enough spice to my life, so the marriage dissatisfaction bubble would just disappear. Unfortunately, the world didn’t open up for me when I finally turned in my letter of resignation. Instead the bottom dropped out.

Removing the demands of my pressure-filled job turned out to be like releasing the keystone in an archway of bricks. Apparently the commitment I felt to the job I thought was killing me had been the glue keeping me intact. Two weeks into my between-jobs status, suddenly, every physical system in my body began to implode, so that over the four-month period from April to August 2006, I went from seemingly fit-for-duty to terminally ill. There had been more eating at me than I ever suspected.

***

When I was first diagnosed with hepatitis in 1958, there was no designation of type A, B, or C. If you were jaundiced and your liver enzymes were askew, it was simply hepatitis. If I had needed a transplant at that time, I would not have gotten one, nor likely survived. Not because I was so ill, but because the first human liver transplant was not performed until five years later, March 1, 1963. Bennie Solis, the recipient, was born with an underdeveloped liver. He died at age three from uncontrolled bleeding during the transplant operation, which was performed by Dr. Thomas Starzl in Denver, Colorado. The surgeon then took a four-year hiatus to do research and resumed liver transplants in 1967 with a greater degree of success. By then I was then twenty, blissfully unaware of the percolating disease the hepatitis had set in motion.

Over the ensuing decades, while progressive cirrhosis was surreptitiously gaining its advantage in my body, research continued and medicine made dramatic improvements. In 1958, however, the protocol for treating liver disease was pretty archaic: bed rest and a low-fat, high-protein diet were supposed to do the trick. I don’t remember how my parents implemented the low-fat regimen, but I will never forget their strategy for adding protein: malteds. That’s right, milk shakes with added malt.

Each morning before work Dad would drive down to the nearby Tuffy’s Candy Store, Soda Fountain, and Luncheonette, come home to wake me up, and hand me a twelve-ounce paper cup glistening with cold moisture, filled to the brim with thick chocolate fluid. Down the hatch, Princess, he’d grin.

Yech. I was a scrawny pre-teen, bloated and nauseated by my disease. Gulp after gulp of that frothy, slow-moving concoction was close to intolerable. When I complained of aches or pains, Mom would crush an aspirin into applesauce. To this day I can’t even think about malted milk or applesauce without having my stomach rise up to barricade my throat. But back then, I did what I was told, which included staying in bed, being tutored at home all of my seventh-grade year, following the recommended diet, and taking prescribed pills.

Throughout later life, when the medical community was looking for an explanation of one physical anomaly or another in my health, they always looked at the check mark I made in the box next to hepatitis, liver disease, or jaundice on the medical history intake form and asked what had been the cause of that earliest manifestation of my gastroenterological disease. There was none.

Mom, how did I get this?

"We don't know, honey. Maybe it was from something not sterilized properly at the orthodontist. Maybe from a germ you picked up at a restaurant or public toilet. We don't eat raw shellfish; dirt hidden in clams or oysters is supposed to be one of the most common causes.

What difference does it make? We'll do what the doctor tells us to do and you'll get better, that's all.

My mom has always been a professional at denial and an expert at turning lemons into lemonade.

I got better, I got sick again. I was hospitalized for testing, which still failed to deliver a conclusive cause for the recurrent illness. The internist’s mandate for full bed rest meant though I would ultimately receive a diploma from Jerusalem Avenue