More than 123,000 Americans are on waiting lists to receive organs that could extend their lives. Many, if not most, will be disappointed, because hearts, lungs, kidneys, livers and other body parts will not become available for them. Peta Cappello, a 59-year-old entrepreneur from Maryland, has lived with transplanted heart and lungs for nearly 21 years. As a “Donate Life Ambassador” for Washington Regional Transplant Community, a group that advocates for organ donation in the U.S. national capital area, she writes here of her experience and the gift of a productive and joyful life she received from her donor.
By Peta Cappello
When I woke on February 9, my first thought was of Michael Graham. It was his birthday, and, had he lived, it would have been his 38th birthday. What might Michael have done that day, I wondered. What kind of man would he have become? He was a handsome 17-year-old when he passed away.
I had an appointment at the dermatologist for skin cancer treatment on Michael’s birthday, a side effect of being on immune suppressants for over 20 years. Well, 20-and a-half years to be exact, as I am counting down the months before the 21st anniversary of my heart and double lung transplant with Michael’s organs.
My transplant anniversary is a celebration of life. It is a day I celebrate for one more year of being alive. It is also a day when I look around and wish for everyone else an appreciation of life so many take for granted.
What would Michael have wanted to do on his birthday? I knew it would not be to spend his birthday in a doctor’s office, so I slipped by the coffee shop and bought a mocha frappe, which, I told myself, he would have wanted on his special day, and settled down to enjoy it for both of us. I sent his mother, Maria, a Facebook message to say: Michael asked for it. She laughed. I am one of the lucky organ recipients that has a relationship with my donor’s family. Michael’s mother is now part of my family, more than just a friend.
None of us can know what life has in store of us. In my younger years, I signed up to be an organ donor in my home country, South Africa, never thinking I would one day need and receive someone’s organs. I considered myself healthy and I certainly lived an active life. But then, gradually, I slowed down, breathing ever more deeply, and eventually found myself huffing and puffing my way through each day. I had no idea that I was seriously ill with atrial septral defect and pulmonary hypertension
Constant pain in my entire body followed, and I had to make regular visits to the emergency ward.
Following studies at the University of Minnesota with Norman Shumway, a pioneer in the field of heart transplants, Dr. Christiaan Barnard had performed the first human heart transplant in Cape Town’s Groote Schuur hospital, in 1967, putting South Africa and Groote Schuur at the forefront of this procedure. So that was why my pulmonary specialist sent my file to Cape Town for further evaluation of my case. When word came back, I was advised that I should get a heart transplant, and that, in my situation, it would be best done in either America or the United Kingdom.
My sister in England researched hospitals in the U.K., then flew to South Africa to take care of me until I was notified that I could be treated in London’s Harefield Hospital, a world-renowned transplant center, as a patient of Sir Magdi Yacoub. Sir Magdi is still Professor of Cardiothoracic Surgery at the National Heart and Lung Institute in London as well as Founder and Director of Research at the Harefield Heart Science Centre (Magdi Yacoub Institute), overseeing more than 60 scientists and students in the areas of tissue engineering, myocardial regeneration, stem cell biology, end-stage heart failure and transplant immunology.
Long Waiting List
That’s how I came to be placed on a long list of patients waiting for a heart transplant in the U.K., the country of my nationality. It was the charter of Harefield Hospital at the time that I would have to wait no more than 24 months. By contrast, today in the United States there are more than 123,000 individuals waiting for organ transplants — and American transplant centers can’t guarantee a maximum wait time for patients. Only one in five of waiting patients will receive transplants within a year.
After 22 months of waiting, I received notice that a heart and lungs had become available for me. Dr. Ashgar Khagani performed the surgery.
I got the call on a Friday night, after I had gone to bed attached to my oxygen tank. By then, I had become perpetually exhausted. Somehow, I knew when the phone rang that night that it was the call I had been waiting for. On hearing that I was to report to the hospital, I found a burst of energy, made calls to loved ones to share the news and even had time for a bath.
Family members cried as I said goodbye, and I found myself reassuring them. I said that if I woke up after the surgery, I would know I was going to be fine. I also knew that if I did not wake up, I would not be in pain again. At the hospital I was reminded that, even if I went into surgery, it might be found that the organs were unusable, or perhaps for some other technical reason I might wake up without having had the transplant.
Slim Odds for Success
By today’s standards, the odds were somewhat slim for a successful transplant for someone in my condition. My heart had been diagnosed as being in end-stage failure, and I had pulmonary hypertension in the lungs. It was recommended that I receive a heart and double lung transplant.
Patients in my condition had to be sick enough to need the new heart and, in my case, lungs, and yet healthy enough to receive three precious organs. Survival rates for people receiving heart transplants and heart-and-lung transplants have improved over the past 20 years, especially in the first year after the transplant. My transplant surgeon had warned me that the survival rate was 50 percent, and that the odds of living a completely healthy and normal life after the operation were 25 percent.
According to the International Society of Heart and Lung Transplantation, currently about 87 percent of patients survive the first year after heart transplant surgery, 80-85 percent survive after lung transplant surgery, and about 85 percent survive after heart-and-lung transplant. The survival rate remains quite good over time. Half of the patients are still alive at 11 years for heart transplant, 5.6 years for lung, and unfortunately only 3.3 years for heart-lung. After the surgery, most heart transplant patients can return to their normal levels of activity. However, for many reasons, less than 30 percent return to work after their transplant.
I have been one of the very lucky ones.
For the first year after my transplant, I was constantly in hospital for monitoring. Fourteen months after I received my transplant, I married and moved to America. We shared our wedding day with family and friends who had rallied around and supported me through my long wait and recovery. A lot of tears of happiness were shed.
Back on my Feet
It took me another year to find my feet and start to work again, and since then, in the last 18 years I have never taken a day off from work. I believe that something in me never wants to be ill again. But that is not unusual. I believe a lot of recipients feel the same way after a transplant. For the past 10 years, I have successfully run my own small business and have 14 employees.
I decided to volunteer at an early stage after my transplant, working first for the American Heart Association in my county, then Transplant Recipients International Organization (TRIO) and others before I became a volunteer for the Washington Regional Transplant Community, our local Donate Life organization.
I was amazed to hear that in Maryland, my home state, although 98 percent of all adults have heard of organ donation, only some 50 percent have signed up to be donors. Due to the lack of donors, we have 120,000 people on the national waiting list for an organ transplant. Of them, 21 will die every day because no organs could be found for them.
Even if people sign up to be donors, their organs cannot be used for transplant unless they die while attached to a ventilator. These specific circumstances are required to maintain the donated organs in healthy condition.
Registering as a donor will never interfere with one’s medical care; medical attendants will always do everything possible to save patients. It is only when the brain has been declared dead (or the family of someone given a grave prognosis decides to independently withdraw artificial support), that the organ donation teams are alerted. Only they have access to the official registry used to determine if the dying person is a registered donor.
Being a volunteer is especially rewarding when I can dispel the myths and misconceptions that may deter a prospective donor. It is something I concentrate on when working at a public event, such as a fair, and of course I then encourage people to sign up as organ donors. I also volunteer in schools where I tell children my story, and hopefully they go home and tell their parents about the importance of organ donation.
In the Washington, D.C., metropolitan area, we have nearly 2,000 patients waiting for an organ transplant. On average, three of those patients will die every week due to lack of available organs.
One Donor may Save Eight Lives
A single organ donor can save up to eight lives. Many more people will receive tissue such as corneas to restore sight, skin for burns, and tendons and ligaments to repair serious injuries to limbs. Upward of 50 individuals can be helped by a single tissue donor.
Michael Graham gave me my life. He also saved the lives of two kidney patients who had been on dialysis and a 17-year-old boy who needed a liver.
Research published in the journal JAMA Surgery found that during a 25-year period (September 1, 1987, through December 31, 2012) an average 4.3 life-years were saved for 533,329 American recipients who underwent an organ transplant. Another 579,506 patients were placed on the waiting list, but did not undergo a transplant. (Read the Los Angeles Times article Organ donors gave more than 2 million years of life to sick patients, published January 2015.)
The realization that there is a long waiting list, and that not everyone will receive the organs they need to live on, makes it more personal for me, as I often sit and wonder, why was I one of the fortunate people to receive my organs and why was I given the opportunity to have a second shot at life? So many people are not this fortunate.
So for birthdays, whether mine, or my donor’s, or at my annual celebration of life party to celebrate my transplant date and the completion of another year of healthy living, it seems only natural to take a moment to thank my donor’s mother, Maria, to honor Michael, and to realize that, with this great act of charity, it is my obligation to give back and to live the best life that I can daily.
It is also my obligation to promote organ donation and to encourage people to sign up to be donors and to let them know that, as a donor family, they will bring joy and a second chance at life to someone who desperately needs both.
To read more about organ donation, go to the United Network for Organ Sharing or the Washington Regional Transplant Community. Or join the 120 million Americans who have signed up as an organ donor by registering at organdonor.gov.