A note from Taylor's Gift Foundation team: We were so honored for Kate Dorff to be the 2015 Outlive Yourself Awards Event Chair and were equally inspired by her family's commitment to raise awareness and support of organ donation. In this post, Kate shares the beautiful story of her sister's life. Our thoughts and prayers are with all of Abbye's loving family and friends as they celebrate her beautiful life.
Written by Kate Dorff, Recipient Family Member
Our story is different. How I wish the last paragraph of this post would end with you reading about my sister, Abbye, and the restoration of life that came with the gift of a new heart. Instead, this ending is going to be hard to read. It will most likely shake you to your core; leave you staring at your computer, wishing for an answer to one of life’s most infamous questions: why do bad things happen to good people? You might shake your fists at the sky or find your mouth hanging wide open with utter shock as you try and process the narrative. The main character is my twenty-eight year old sister who, in 2011, at age twenty-three, was diagnosed with viral cardiomyopathy. This diagnosis catapulted Abbye, my mom, and me down a road ending in our present circumstances; I wish we had taken a wrong turn along the way.
Both Abbye and I are proud West Texans, with a normal, beautiful childhood filled with Barbies and princesses, cheerleading, friends, summer camp, and for her, a love of singing, the Red Raiders, and Kappa Kappa Gamma sorority. Those carefree childhood days slowly began to fade into ones full of lethargy, unexplained weight gain, and a deep understanding of what it must feel like to try and breathe with an elephant sitting on your chest. Abbye’s dreams of a future in fashion or music were replaced with a desperate desire to just function.
Photo: Kate and Abbye (2010)
The doctor told us that the size of her heart had doubled in comparison to an earlier image taken when Abbye was a teenager, and we all looked at each other, with the hollow expression of disbelief, as sixteen pounds of fluid came off her body in five days, wondering, “what do we do now?”
Houston’s Texas Heart Institute beckoned us and we accepted its unwanted invitation of echocardiograms, blood draws, beta-blockers, and insurance forms. We still held out hope that medicine would treat her failing heart without any further intervention. We spent days and nights praying that her heart function would increase from only 20 percent to that of a normal heart’s 65-75 percent.
The callouses on our knees hardened as we were introduced to the Left-Ventricular Assist Device (LVAD). That simple introduction left us bloody and battered when only four months post-implantation my mom, having gone home after visiting hours the previous day, returned to the cardiac ICU the next morning to discover that Abbye’s speech had been stolen by a stroke. The LVAD was disconnected and we found little consolation in that her heart had rested enough over the previous four months with the LVAD that a heart transplant was not imminent and we could try medicine instead. Despite Abbye’s continued speech improvement, the savage known as heart failure is not so easily broken, and he returned with a vengeance fourteen months later.
And here is where the real story begins. I want you to take a breath, right here, and focus all of your mental acuity on this exact moment in our narrative. Every single person waiting for a transplant, and their families, reach this point in their war, and this where their ending is ultimately written. You, friends, have the ability to change an ending into a beginning.
Abbye’s beginning reversed course, however, and that’s when reality hit: my precious sister’s life was in the hands of someone whom I had never met and would never meet. Her beginning relied solely on the decision of someone else’s precious family member to give life after death.
As we stood in the hall outside of the cardiac ICU during our six-week donor heart vigil, we saw the doctor’s mouth moving but were left completely unable to fully comprehend his message that there hadn't been a heart transplant in the entire Houston network in six weeks. Since Abbye's heart was barely beating on its own, the external tandem pump that was circulating blood through Abbye’s body, which had been inserted in her groin for almost ten days, forcing her to lie completely still on her back, moving no more than 30 degrees upward, would have to be disconnected in seventy-two hours. We didn't have any options left. There was an organ drought, said the doctor, and we just need a donor heart that’s a match for Abbye. And we needed it yesterday. And it hadn’t come yet. And we didn’t know if it would come.
And so we waited. And we prayed. And we cried. And in the thirteenth hour, we got the call, and we fell to our knees full of thanksgiving and hope, while also recognizing the deep despair that flooded our souls, mixing with our relief, knowing what was happening in another hospital, to another family, at this exact moment. The juxtaposition of those feelings was almost too much to bear. As this family wrote their daughter’s ending, we gave our own hearts over to them too, an equal exchange of love and thankfulness that we wished we could someday pour over them in person.
Abbye’s wait for a new beginning took too long, and after a long night of celebration, where we sat in a waiting room and wrote what we thought was the closing chapter of this miserable narrative, her foot didn’t move. That’s what it came down to: a motionless foot. A left foot that didn’t react to stimulus in the same manner as its partner on the right, despite what the doctors had told us the night before in terms of a beautiful new heart having been successfully transplanted into Abbye’s tiny chest cavity. Her old heart wouldn’t have made it two more days. The risk of stroke is a risk you’re forced to accept when a machine has to keep your heart beating. Heart pumps equal blood clots, and blood clots had stealthily moved up her arterial highways undetected, pitched camp in multiple cerebral veins and arteries, and stole the oxygen Abbye’s brain needed to ever speak, walk, or eat again. They took up camp permanently, and my Abbye was forced to move out. Abbye’s beautiful new heart is still beautifully beating, but Abbye’s beauty was torn from us that night because there weren’t enough donor hearts. There was a drought.
The thought of organ donation is a hard reality, especially within the confines of an even harder reality we call tragedy, but we must do it anyway. We must make the decision to feel uncomfortable when asking our loved ones about their wishes. We must temporarily write our own ending so that someday we can give someone else a beginning. You don’t have to like it; you just have to do it.
Our reality was rewritten on April 7, 2013, when two families were robbed of the joy restored life brings through organ donation because the wait was too long to bear. And since Abbye can’t honor her life-giver by telling or writing her own beginning, I will make it my life’s mission that everyone else who was given a new narrative can.
Register to become an organ donor at TaylorsGift.org/register
Kate graduated from Texas A&M University in 2009 with a degree in International Relations from the George H. W. Bush School of Government and Public Service. Her professional career began in Washington, DC where she served in various capacities during the George W. Bush Administration, including positions at the Department of Defense and at the White House. Upon returning to Dallas, Kate was employed by PlainsCapital Corporation. In addition to raising awareness for organ donation, assisting with Abbye's medical care, and volunteering at her church, Highland Park United Methodist Church, Kate’s most important job title is mom to her three-year old son, Collier, and wife to her husband, John.
Kate’s grandmother, Bette McMillan, was also a liver transplant recipient in 1994, and was given the gift of seventeen additional years to spend with her family. Two individuals, and their loved ones, gave the ultimate gift to Kate's sister and grandmother. She vowed to honor these the these families and their selfless acts through furthering missions such as those supported by Taylor's Gift.