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Ed

His Name Was Ed

The first time I went to Omaha, Nebraska, it was October of 1994. It has since become like a second home, it bears that sort of feeling.

But that first time, I was there because I was in liver failure. I was twelve years-old and my parents had exhausted options in our home state of Florida.

This was an era before Internet; fax machines were the hot technology. The information and support available to patients and families was limited. Being as we were so far from home, we stayed in a sort of group home offered as a patient resource. It was a converted Victorian-era home called “The Potter House”, where families from out-of-state could stay more affordably than a hotel for extended visits. We were in room six, on the second floor. Our room had a lovely sitting area, a sunroom of sorts, that was ideal for reading. It overlooked the quiet neighborhood about two miles west of downtown, which is now known as the Blackstone area.

Every act of kindness creates a ripple with no end

I was being evaluated as a candidate for a liver transplant. This process can be lengthy, requiring all sorts of tests before learning whether one will “qualify”, for lack of a better term, for the national waiting list. And, once a person is listed, there is no guarantee that they will receive the organ they need. Life on the waiting list is precarious, but that’s another story for a different day.

The idea of a liver transplant was terrifying, as in the early nineties, it was still kind of a new thing. There was a support group and some books available, but I was unclear about what my future would entail, should I receive a new liver. Would I be able to attend school or play sports? I was at that time very sick and home/wheelchair bound, so all my hope was to be a “normal” kid again.

Then I met a man named Ed. To this day I don’t know his full name or really any details about him. I just remember coming downstairs to breakfast, gathering in the communal kitchen; I watched Ed lace up his shoes and sprint out the door, going for a run.

Ed had very recently undergone a liver transplant. And he was out for a run. I was fascinated.

“What advice can you give me?” I implored, incredulous, to this man that was a picture of health.

He smiled and considered my question. He replied: “it’s gonna be hard, it’s gonna hurt, but you gotta push through it.”

I was floored. In that moment he became a sort of enigma, embodiment of a muse.

Nearly 25 years have passed and I have thought of Ed’s advice every day. It was simple advice, but he represented the very torch of hope to me.

In many instances, his advice has gotten me through the day.

I don’t know what became of Ed, but I am still here. His advice helped me navigate and recover from two liver transplants, one on April 16, 1995 and another on August 5, 2011. His advice taught me how to be a good patient, because that in itself is a difficult prospect at times.

Ed will never know what he did for me that day. It’s amazing that we can touch another person’s life without ever knowing it.

The Wall

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In February 2018, my friend Darren reached out to me regarding a project at Orlando Regional Medical Center. Darren is the recipient of a kidney & pancreas, and I am a liver recipient. (I have a chronic condition known as Budd Chiari Syndrome, for which there is no cure. Because of this condition, I received my first liver transplant April 16, 1995. Unfortunately, I needed a second transplant on August 5, 2011, due to recurrence of BCS.) Darren and I have worked together on a number of organ donation-related causes, and this one sounded especially interesting.

Still living in Tampa at the time, I traveled to Orlando Regional Medical Center. Darren introduced me to Debbie Alexander; Debbie brought together a small group of hospital staff with the hopes to find suitable artwork for a wall that had been allocated for a project.

The project is called “Wall of Heroes” and was designed by a caring physician named Jeff Sadowsky. Dr. Sadowsky believed something needed to be done to honor organ donors and their families. He explained that when someone passes, and they choose to donate, their families leave the hospital with their grief and a plastic bag containing their loved one’s belongings. They return to their lives within the community without distinction – but they are heroes, their loved ones are heroes, and they deserve recognition.

Dr. Sadowsky chose to act, founding the organization GR8 to DON8 in 2009. Merging his love of fitness to the cause, he formed the GR8toDON8 8k Run for Organ Donation. Contributions from the GR8toDON8 8k Run were allocated for a second passion project of Dr. Sadowsky’s: The Wall of Heroes. Dr. Sadowsky thought families and loved ones should have a place to go in which they could honor and memorialize their hero. A wall within Orlando Regional Medical Center was designated for the memorial.

Currently the Associate Director of the Medical Intensive Care Unit at Orlando Regional Medical Center, he was initially impacted by the power of donation during his early years in training, where he often saw very ill patients in need of transplantation.

One organ donor can save up to eight lives (hence the 8K Run for Organ Donation) while tissue donation can improve the quality of life for dozens more. Last year, nearly 31,000 lives were saved due to the generosity of organ donors. Today, more than 120,000 children and adults await that precious gift. Hundreds of thousands more patiently wait for the gift of tissue donation.

Dr. Sadowsky’s vision for the wall was a piece of artwork that would somehow convey gratitude and honor for organ donors. Darren and I brainstormed on an interactive project that educates the public about the importance of organ donation and will hopefully inspire individuals to choose life and register to become a donor (if they have not already). Meanwhile, Dr. Sadowsky and the collective group of Team Orlando assigned the concept of the ripple effect. How would we create – and fulfill – the vision of these caring people?

As a liver recipient, the mission to honor donors resonated deeply. I sketched a few designs but the painting that was ultimately selected came together quickly. I named the painting “the Odyssey” in honor of my beloved physician, Dr. Michael F. Sorrell, after something he said many years ago.

The Odyssey. The droplet signifies the act of donation, which triggers the ripples to begin moving. Like water, emotion runs deep, with each ripple representing the different aspects of the donation and transplantation process.

Dr. Sorrell is now retired, but in 1994, he saved my life. I was an eleven-year-old child with an undiagnosed disease. I went from being a healthy kid to deathly ill and spent a year bouncing through countless doctors and tests, to no avail. My parents had heard of Dr. Sorrell, and although he did not typically deal with pediatrics, agreed to see me. My family traveled to Omaha, Nebraska to meet him, and I was finally diagnosed with Budd Chiari Syndrome. Due to the advanced state of my disease, I learned that I would need a liver transplant to survive. I’ve always appreciated Dr. Sorrell’s kind but matter-of-fact way of speaking, and he described the transplant experience as an “odyssey”. In all the years that have passed, I’ve yet to find a better term. This odyssey begins as a patient, hoping you’ll qualify to be listed, despite that your opportunity at life means tragedy for another. Then the call comes that the transplant team located a match: you’re simultaneously so many emotions that it leaves one breathless. It’s an experience in extremes.

My painting is a simple design: a cascade of ripples that are created by a single water droplet, comprised of a bold but limited palette of blues against a bright white background. The water droplet represents the action of an organ donation, and the ripples are all the lives positively impacted. Some ripples will be organ or tissue transplant recipients, some represent organ donors. There are eight definitive ripples that represent the eight transplantable organs.

Darren and I contacted an organization called Intermedia Touch to take the second part of our idea to fruition. We wanted to fulfill the message of the project through means of a digital and interactive product. This piece is especially unique in that while it resembles static artwork from a distance, it is live and interactive on a 70” monitor. The painting was animated so that the water droplet falls, causing the eight ripples to move. As viewers approach, they’ll notice the soft sound of water moving. Users can touch any one of the eight ripples to learn about organ or tissue donation, to dispel the common myths and misconceptions about donation and transplantation, to register to become a donor, or to register for the GR8 to DON8 race. The piece honors donors by allowing families to recognize their loved ones in the Heroes gallery, where they may share up to five photos as well as video. It is a place where families can honor their loved one and by sharing their story, hopefully pass on a message of hope to others.

The project went live January 7^th at Orlando Regional Medical Center. It will be officially revealed in April for Donate Life month.

Meanwhile, I have been trying to put The Odyssey into words:

The Odyssey.

IV’s embedded: in your hands, the tender flesh at the crook of your inner arm, in your neck, a port in your chest.. they go on.

Labwork at 4am, or some timeframe like that; the phlebotomist going in before you can fully wake, lights suddenly on, elastic tourniquet snapping around your arm, searching for and hopefully finding an irritable vein.

Transplant Team arrives, you get bad news. They leave in a flock-like formation, white coats, sympathetic smiles and heads nodding. An hour later, the door bursts open, a uniformed aide whips a wheelchair into your small room. They usher you out of bed, filing your attached IV cart in sequence with the awaiting chair. They wheel you and your IV down the hallway, into an elevator, and into a freezing cold, darkened room. A tech awaits with an ultrasound, CT or MRI, or some machine. You cooperate as they direct, the test is performed, and you come and go. An aide rolls you back to your hospital room. As you ride through the crowded hallways you notice that most people do not look at you, or make eye contact, with a person in a wheelchair.

You take a moment to recognize your own slim, jaundiced face in the mirror of your hospital room bathroom.

The hospital at night, quiet finally falls, the pace slackens. You try to sleep.

But the worst.

Beyond any physical pain or anything a patient endures;

Is watching others watch you.

Seeing the effect it has taken on the people you care about, that care for you. You identify sorrow, grief, deep worry, bone-deep fear.

There are no plans for the future. A baby shower for a baby you hope to live to meet; an engagement party for your best friend — and she asks you to be a bridesmaid. I think to myself, I hope I am still alive to see my best friend on her wedding day.

And then the call comes, perhaps the most significant in your lifetime: we found a liver, it’s a perfect match for you. In disbelief — As the news washes over you, you realize with your heavy, heavy heart that another family has arrived at their darkest hour. It is a surreal feeling; you are being given a chance.

Despite the heartbreak and pain, something miraculous is taking place. So many people come together, no matter the hour of day, they rise to the occasion, they are at their best. An orchestra plays beautiful music.

You wake on the other side. You have crossed over.

A new kind of fight begins: The journey to recovery: who knows what life will become? Will life be like it was before all the illness and pain?

It will be better; Each day, you strive for that. It’s difficult, there are setbacks, but there is the victory that you are on the other side and you can look forward to things again. There are lots and lots of small victories, like the first day in months that you can sit properly at a table and enjoy a simple meal with your family. There are the first stairs you ascend, wobbly and quite weak but determined.

Is He okay? I made a pact, took a vow, that I am going to be the Guardian of this new liver, and I’m going to LIVE!

So many put their hearts into saving your life, so go LIVE your life, gratefully humble. ion(e){retur

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What April 16th Means To Me

green ribbon Did you know that April is National Donate Life month? Each April, we celebrate the generosity of those who have saved lives by becoming organ, eye, tissue, marrow, and blood donors.

What does this mean to you?

Organ donation is something that people tend to feel uncomfortable about, as it involves end-of-life decisions. I do not understand this hesitancy to explore things that involve death; we celebrate birthdays, the coming-into life. We must also consider the going-out-of (which we all hope shall be merciful).

Firstly, I find it amazing that we can perform the act of transplantation – organs, tissues, everything. Initial attempts at transplants were devastating. The transplant teams were fighting hard for their desperately sick patients but were failing time after time. It broke their hearts – they had grown to know their patients and their families. The brave pioneers of transplant surgery failed so miserably that they shut down the program for years. One of their biggest hurdles was in preventing rejection of the transplanted organs, chiefly due to a lack of reliable anti-rejection methods and medications. The concept was revived as technology evolved, and modern transplantation is nothing short of amazing.

Furthermore, transplantation demonstrates the transparency of color, gender and class, which I whole-heartedly support in my overall view of society. Additionally, I think it’s beautiful that someone can simultaneously leave this life and give life to another.

That said, on to the date of April 16th. On that day in 1995, I was twelve-years old and withering away in a hospital bed. People chose not to give up on me – family, doctors and nurses, and complete strangers.

April 16th, 1995, is the date of my first liver transplant. I went to sleep, the doctors went to work, my parents tried to nap in an uncomfortable waiting area throughout a very long night.

As this was happening in our lives, another family was dealing with sudden tragedy; the death of a twenty-one-year-old: son, perhaps a brother, a friend or a nephew. I’ll never know.

While volunteering for the cause of organ donation, I have had the pleasure to meet a number of very brave donor families. Many have shared that donation was and is a small comfort to their grieving hearts: knowing that another human being was able to live and carry a part of their loved one. I speak for the community of transplant patients in stating that we all are very grateful and regard our donor as a hero.

After my liver transplant, I enjoyed sixteen healthy, happy years. Unfortunately, my disease is chronic, and I would go on to require a second transplant in 2011. Both donor families chose to remain anonymous, and that’s OK. Regardless, I think of my donors every day. And each year, on April 16th, I pause and reflect upon the day that changed our lives.

Organ donation saves lives. The spectrum of donation is very amazing and does incredible things for people: corneas can restore sight for someone that is blind, bone can mean the difference for someone’s ability to walk, a heart can beat for someone else. I urge you to consider this important decision. If you haven’t already, you can register here.