Blessed by Paco: Five survivors cherish gifts of life from boxer
Second of two parts
DEATH WAS NEAR. They told her that. Chances were it could be weeks - perhaps longer but not significantly unless she had a lung transplant. For years, Ashley Owens had known that she would not live to be 30 or even 25, that cystic fibrosis would sweep her away one day before she would have a chance to have a career or a wedding or children. It was a given she had come to accept. But now that she was coughing up blood and was in what her doctors called the "the end stages," the sudden finality of her circumstances terrified her. All of it seemed to be happening too soon.
They told her that they would be moving her to the Hospital of the University of Pennsylvania. It was not something she wanted to do, if only because she had become accustomed to St. Christopher's Hospital for Children. She had been going there three or four times a year since she had been an 8-year-old and had befriended the nursing staff. But her doctors told her that there was a surgery that she would have to have, and that it was perhaps a good idea to become acquainted with the transplant team at Penn. Oddly, a feeling of calm settled over her at that point - what she would later describe as a "a trancelike state." So she found a pen and some paper and began writing goodbye letters: to her parents, Bob and Charlotte; her young brother, Robert; and her boyfriend, Jesse, the young man who stood by her through her worst days.
With a shaggy beard and gentle bearing, Jesse Quinter swept her off her feet, both figuratively and literally. When she had been too weak to walk somewhere, Jesse lifted her then 5-foot, 69-pound body up and carried her on his back. They had met each other in study hall at Owen J. Roberts High School in Pottstown. Ashley told him before their first date how sick she was, but he just shrugged and told her: "I like you for you." However worrisome her ordeal would become, Ashley would come to depend on Jesse to cheer her up. When she tearfully told him on the phone that day that she would be leaving for Penn, he left early from his job at the Warwick Child Care Center in Lionville and hurried to her side.
They talked. But she was upset and no words could seem to soothe her. Even when Jesse reassured her that she would be fine, she was in a forlorn place that seemed beyond even his reach. It was then that an idea popped into his head. He excused himself and said he had to get something from his car. When he came back, he sat down in a chair by her bed and resumed their conversation, which he always tried to keep light. Instead of dwelling on the sobering prognosis that faced her, Jesse would ask what she wanted to do when she got out of the hospital, where she would go to dinner and what trips she would like to take. It went on like that until he paused.
"I have to talk to you about something," he said.
Casually, Ashley replied: "About what?"
Jesse got down on one knee and displayed a diamond ring.
And with eyes wide, Ashley cried, "Oh, my God!
On the very evening this scene was unfolding last year - Friday, Nov. 20 - Francisco "Paco" Rodriguez was preparing to step into a boxing ring at the Blue Horizon, where he had a scheduled 12-round bout with Teon Kennedy for the vacant United States Boxing Association super bantamweight title. Paco was stopped by Kennedy in the 10th round, passed out in his corner and died of a head injury 2 days later at Hahnemann University Hospital. But it was there that one story ended and another began, the tale of how with a stroke of a pen on a consent form, a grieving widow bestowed life upon five people by offering seven organs from the body of her beloved husband for transplant donation. What began in a place of unutterable grief ended up in a realm of hope reborn.
Eighteen people die each day in the United States waiting for a transplant. In the case of the five people who received organs from Paco, each of their histories is tied together by a common thread: They had endured untold suffering in the grip of their various illnesses. Only days away from death in some cases, they looked upon themselves as fighters in the same very real sense that Paco had been. With the exception of his uncle, Ramon Tejeda, who received a kidney in a "direct donation," none of them had ever heard of the young boxer from Chicago. Given what they have received from him - a heart, a liver, two lungs, two kidneys and a pancreas - none of them will ever forget him. While the recipients have not yet met, they share a bond that now unites them with someone they had come to cherish: Paco.
The five are:
* Ashley Owens, 23, of Spring City, Chester County: Both lungs.
As a 10-month-old baby, she weighed less than 7 pounds. Initially, doctors suspected she had a tumor. But tests revealed that she had cystic fibrosis, which compromised her breathing and to some extent her digestion. Simple childhood pleasures such as running and swimming were beyond her ability. In and out of the hospital during her school years, she became an excellent student with the help of a tutor. Physically, she began "going downhill" at age 20 or so, a period during which her lung capacity dropped to as low as 20 percent. Without the help of oxygen her lips would turn blue. Concerned by the statistics that foretold of an uncertain outcome for lung-transplant recipients, she held off going onto the waiting list until just hours before she suffered a collapsed lung on Nov. 13, 2009. Of the pain her daughter endured, Charlotte Owens says, "Some days she would push through it. Other days it would be more than she could bear."
Ashley says: "Until the last 2 or 3 years, I had an OK handle on it. But when I was 20, I had stopped responding to the medication I was taking. My body had become so full of it that I had become immune. They told me I had 2 years to live. When I was 21, they told me I had 1 year to live. I was scared."
* Meghan Kingsley, 26, of Gaithersburg, Md.: Liver.
At 16, she was diagnosed with neurofibromatosis type 2, characterized by the growth of non-cancerous tumors along the nerve that transmits information from the inner ear to the brain. An exceptional competitive swimmer who had dreamed one day of going to the Olympic Games, she underwent surgery in June 2001 for the removal of a tumor and was left deaf in one ear. In October 2007, she had decompression surgery on another tumor that doctors chose not to remove. In an effort to preserve what remained of her hearing, they instead carved away some bone that would allow the tumor room to grow. However, she began experiencing significant hearing loss and in September 2009 enrolled in a study for the experimental drug PCT299. By November, she was in the throes of liver failure.
Meghan says: "I became very, very ill and ended up in Johns Hopkins. I remember I was constantly burping; I had so much fluid in my stomach. I became jaundiced. [The whites of] my eyes were green and yellow. Mom said I looked like 'The Grinch.' I no longer had any bodily function. They later told me I was within 48 hours of dying."
* Alexis Sloan, 27, of Norristown: Heart.
At 22, she was diagnosed with congestive heart failure, prior to which she had experienced symptoms that included a dry cough, fatigue and shortness of breath. "A lot of big words were thrown at me," she says. "Scary." Within a year of her diagnosis, she received a biventricular pacemaker and defibrillator implant. Efforts to manage her condition with medication failed and in March 2007 she says she "coded," which is hospital slang for going into cardiopulmonary arrest. Doctors then equipped her with a left ventricular assist device (LVAD), which she found to be an unwieldy contraption. Battery-operated, it had internal and external components that left her feeling on some days as if she was a robot. To get on the waiting list for a heart, she had to fulfill a standard set of requirements that proved that she would submit to postoperative care. In May 2008, she had done that and was given a pager, with which she would be contacted when a heart was available.
Alexis says: "When they gave me the initial diagnosis, it was devastating. It seemed like a death sentence. There was a lot of confusion. When I got the LVAD, I was not happy with it. No young person should have to live that way. With the protocols I had to go through, it seemed like it was taking forever to get on the list. I became depressed and one point even suicidal. I just thought: 'I am going to die anyway . . . ' "
* Vicky Davis, 58, of Clifford Township, Susquehanna County: Pancreas, kidney.
At 37, she was diagnosed with diabetes, which through the years became progressively worse. In December 2005, she was told that her kidneys were failing. She went on dialysis in April 2006 and within a year was placed on the waiting list for a new kidney and pancreas. Initially, she says, she was told the wait would be just a few months. But whenever she received a call that there was a potential donor for her - and she says she received nine of them - the kidney and pancreas would end up going to someone else or there would be some other issue that would come up. For 3 1/2 years, she spent 3 days a week on dialysis, a process by which the blood is cleansed of toxins.
Vicky says: "Going to dialysis was like having a job. I would have to be there by 5:30 a.m. and I would not get back until 10 a.m. And it was so draining. People would ask me, 'Do you work?' And I would say, 'No, I am on dialysis.' It takes a lot out of you."
* Ramon Tejeda, 58, of Chicago: Kidney.
At 40, Tejeda had his left kidney removed because of kidney stones. In December 2003, his right kidney began to fail. It was full of cysts and functioning at only 10 percent. He began dialysis and was placed on the waiting list for a kidney. Increasingly, the 3-day-a-week, 4-hour-a-day dialysis treatments began to wear on him. Depression set in. Though he says they were keeping him alive, they were not eradicating the underlying problem he had. Unable to continue in his factory job, he went on disability. On dialysis for 6 years, he had inched to the top of the waiting list when he received word last November that Paco had died and that his kidney was being offered to him in a "directed donation." Paco was the son of his cousin, Maria.
Ramon says: "I was not doing too well. I had been on dialysis for so long. When I heard what happened to Paco, I was so very sad, very depressed. I remember him as a boy. Knowing that the kidney would come from him was hard, but it was something I knew that Paco would have wanted me to accept."
Ramon pauses and says, "He was giving me a gift."
Jesse had told Ashley that evening when he proposed: "We have been through a lot of stuff, and we will have more stuff to go through. This is not the end. But whatever happens between now and whenever, I just want you to know that I will be here for you. Whatever happens, you can count on me."
And with that he slipped the ring on her finger, which had become so bony from her weight loss that it had to be reinforced with tape to keep it from slipping off. Ashley gazed at it as her eyes pooled with tears.
Immediately, the hopelessness that had engulfed her seemed to lift. From the hallway, the nurses came into the room to admire it, one after another. Suddenly, she says she found "the courage" to go over to HUP, where she was transported later that evening. There, she and Jesse had an impromptu engagement party. He ordered in pizza and wings. What they were unaware of as they sat there eating was that Paco was slugging it out with Kennedy at the Blue Horizon, the outcome of which he had hoped would propel his boxing career into a place where he could command larger purses and better support his wife Sonia and their baby daughter, Ginette. Uncertain of when she would get the transplant she so desperately needed, Ashley said good night to Jesse and went to sleep.
Whatever else the process of organ recovery and the ensuing transplant surgeries are, it is a synchronization of many moving parts. In the case of Paco, it began when he was declared brain dead on Sunday, Nov. 22, at 7:42 p.m., at which point Janet Andrews, the transplant coordinator for the Gift of Life Donor Program, introduced herself to the Rodriguez family, offered her condolences and arranged for a priest to come by at their request. At 10:30, Andrews sat down with them and offered them the option of organ and/or tissue donation. Sonia signed the consent form an hour later. Only when that occurred could Andrews move forward. She alerted the Illinois Organ Procurement Organization of the availability of a kidney for Ramon and arranged for Paco to undergo a series of tests to evaluate his suitability to be a donor, including an echocardiogram to test his heart. Until his organs were recovered, he would remain on a ventilator with his heart beating.
On Monday at 9 a.m., GOL began the organ allocation procedure: Multiple potential recipients are identified and the organs are offered to the transplant surgeons, who assess them and reply via mobile device if they are interested or not. If they are, GOL contacts them by telephone and advises them of where they are on the list. By 1 p.m., the allocation procedure had been completed, the operating room space been reserved and the recipients had been contacted. Upbeat, Ashley says she prepared as if she was going to get better by taking a shower and braiding her hair. Told by her surgeons that they had found "a great liver," Meghan sat up in her hospital bed and said, "Let's go for it." Alexis was contacted not by her pager but by cell phone and told, "Come and get it. It's yours." At her dialysis appointment, Vicky was informed in a call and replied: "Are you sure?" Ramon could not help but think of Paco and how hard it had to be for Maria to lose a son.
That Monday at 6:30 p.m., four recovery teams entered the operating room at Hahnemann, where Paco was prepped and draped. Each organ has to be implanted within a certain span of time once it has been recovered. Says Howard Nathan, the president and CEO of GOL: "You have 3 hours for the heart, 6 for the lungs, 6 to 12 for the liver, 12 for the pancreas, and up to 48 for the kidney." In the course of the 3 1/2-hour surgery, the heart and other organs were cooled by separate cold profusion lines and are removed one by one. At 9:07, the heart was recovered, tripled bagged and transported to the adjoining operating room for Alexis. At 9:15, both lungs were recovered and rushed to HUP for Ashley. At 9:50 p.m., the liver was recovered and flown by helicopter to Johns Hopkins Hospital in Baltimore for Meghan. And at 10 p.m., both kidneys and the pancreas were recovered. A kidney and the pancreas were hurried to Geisinger Medical Center in Danville, Pa., for Vicky, and the other kidney was flown the following morning to the Rush University Medical Center in Chicago for Ramon.
Given that Paco had been a highly trained athlete, his organs were exceptional. In fact, Charlotte Owens said that the surgeon told her that he had never worked with better lungs, which Ashley discovered worked wonderfully. Suddenly, she discovered that she could breathe deeply, and that she had stopped coughing. Within weeks of their operation, the other recipients reported excellent progress. Alexis says she could hear "the profusion of blood" running through her, "that ocean sound," and that each of her senses became amplified. "I could think better," she says. "I was even answering questions off of 'Jeopardy!' " While Meghan has been hospitalized seven times since her transplant for periods ranging from 4 to 23 days and still has "dozens of tumors" in her body from her neurofibromatosis, she says she is "no longer dying but living." And Vicky and Ramon both say they have regained strength.
But curiosity set in. With the exception of Ramon, none of the others knew who the donor was. Confidentiality guidelines are such that the identities of the donor and the recipients are guarded and cannot be set aside unless either party agrees to share information. Consequently, there was always only speculation on the part of the recipients on the identity of the donor. While she was in her initial recovery, Meghan says that some friends tried to piece it together: The liver had come from Philadelphia from a 25-year-old male. When the friend told Meghan that a boxer of that age had just died in Philadelphia, she remembers thinking: "How bizarre! In this moment, I could not be fighting more."
Meghan says, "I just knew it was him. I could feel his presence."
Outside, a November rain was slanting from the gray sky in heavy sheets. But inside the third-grade classroom at Limerick Elementary School, it was dry and warm and filled with the enthusiasm of children, who were seated on the floor at the front of the room with their student-teacher, Ms. Owens. In preparation for a book the class would be beginning soon, "The One in the Middle is the Green Kangaroo," by Judy Blume, Ashley asked them to predict what certain items she placed before them would have to do with the story: A jar of peanut butter; a doll with a broken leg; a kangaroo; and a green marker. Working individually and then in groups, Ashley recorded some of the suggestions on an easel.
She stepped back to look at them and said, "These are all good predictions, but guess what? None of them are right."
The children moaned: "Awwwwww!
"So," she continued, "we are going to have to find out what happened compared to the predictions. OK? It should be a lot of fun."
Scarcely taller than some of her students, Ashley had always hoped to become a teacher, specifically third to sixth grade. She enjoys the enthusiasm that the children bring with them to class each day. When she graduates this month from West Chester University, she plans to start looking for a teaching job in Pennsylvania or New Jersey, somewhere she and Jesse can settle down. Doctors have advised her not to teach children any younger than third grade because it would place her at an elevated risk for infections. Such warnings are heeded by her but not just because of her own health. She says she has a responsibility not just to herself but to "the gift" that she has received. To show her appreciation to Sonia, she has crocheted a pink blanket for Ginette.
It is something the others also say, that they feel a connection to Paco and his family. With the aid of Lara Moretti, the family services supervisor for GOL, Sonia reached out to the recipients in a letter to let them know who her husband was, how deeply she loved him and how she hoped that they were doing well. Says Moretti, who vets each correspondence: "Typically, families look upon the donation as a small bit of good that can come out of something terrible." One by one, the recipients replied - again, through Moretti. They told of their ordeals and of how grateful they are, how the organ they received allowed them to become fully alive and be with their loved ones. In a way that she had not anticipated, Sonia found the letters she received to be helpful to her as she had moved through the stages of grief. Sonia says she hopes that she can remain in contact with them.
"The 25 years that Francisco lived were awesome," says Sonia, as a photograph of her husband looks down at her from the dining room of his boyhood home in Chicago. "He was healthy and enjoyed life to the fullest - and now [the recipients], who have suffered for so long, have that opportunity. I want to be sure they are OK and taking care of themselves, not just because they are carrying a piece of Francisco with them but because life is supposed to be lived. I pray for them every day."
Along with what Sonia has told them, the recipients have found out more information about Paco online, where there are portions of a few of his bouts. Alexis says that she became "obsessed" with learning more about him. Given that she is a big boxing fan, she says she is surprised she had not been at the Blue Horizon for his bout with Kennedy. It was an event she would have attended, and can only think that she stayed at home that evening because of her health. But she has looked into who Paco was and says "he was no slouch," not just a fine amateur and pro boxer but a good family man, "known for joking around and laughing." Says Alexis: "I was happy to learn that he had that kind of spirit."
The bond to Paco that they feel is a deep one. In the hard days that followed her surgery, during which she experienced periods of dementia, and in her subsequent hospital stays over the course of the last year, Meghan would find herself saying, "Come on, Paco! We can do it. Work with me on this." Once, she looked down at her hands, which for a period were covered with gloves. She said to herself: "Look! I am a fighter, just like Paco!" When she had a setback in March, she rubbed the scar at the site of her incision and promised Paco: "You know, if you get me out of this, we'll go see your wife and your little girl." Meghan says she hopes to do that at some point, if only just to thank Sonia and the Rodriguez family in person.
"I feel I am not just doing it for myself now, but I am doing it for him and his family," says Meghan, who is a graduate of Elon University in North Carolina. "I want to know how Sonia is doing. I want to know how Ginette is doing. I want to go there and visit, and see the gym where Paco boxed. Me, being an athlete, I understand the dreams he had. I had wanted to be a champion. So I want to be a part of that. I would like to think of them as my extended family."
Vicky has a photo of Paco taped to her refrigerator. "When Sonia wrote me, I read her letter three times," she says. "He was so young. And she is young. But you could see there was this strong bond between them. I hope that we can become close. I would like that. Like the daughter I never had."
Vicky pauses and adds, "Somehow just saying thank you is not enough."
There will be a wedding. Bob Owens did not think he would ever have the chance to do it, but he will walk Ashley down the aisle and give her to Jesse. While there are still plans to be arranged, Ashley says she would like to have her wedding outdoors at the Valley Forge National Park and then honeymoon in Greece. Jesse says he would prefer to go to the United Kingdom, but says that Greece is fine, that he keeps telling her: "You set it up. Go where you want to go and I will follow. I want you to enjoy yourself."
Given that it is very likely she would have died were it not for the transplant, Ashley looks upon each day as precious, even if there are some worries as she moves forward. While her doctors have told her there is no physical reason she cannot have children, she is aware that the life expectancy statistics for lung-transplant patients are somewhat less encouraging than they are for the other organ recipients. "They say only 50 percent survive 5 years and 20 percent survive 10 years," says Ashley, who adds that she has also been told the absences of setbacks in the initial year are a positive indicator. But what also has her concerned is how she is going to continue to pay for the care she has to have, which includes 25 prescription drugs each day. While she and the other recipients have been covered by health plans, it has offset only a portion of the costs that they have incurred.