TURNING GIFTS OF LIFE INTO NEW BEGINNINGS
The Ohio State University Comprehensive Transplant Center
ABOUT ROBERT HIGGINS, MD Surgical Director, Heart Transplantation Program Director, Division of Cardiac Surgery Director, Transplant Signature Program Before joining The Ohio State University Medical Center, Dr. Higgins led the Department of Cardiovascular-Thoracic Surgery at Rush University in Chicago for seven years, and served as chair of Cardiothoracic Surgery at the Medical College of Virginia from 1999-2003. Prior to that, he founded and led a successful lung transplant program at Henry Ford Hospital in Detroit, where he also served as director of Pediatric Cardiac Transplantation at the Children’s Hospital of Michigan. Dr. Higgins is board certified by the American Board of Thoracic Surgery. Dr. Higgins’ extensive participation in community service organizations and professional societies includes serving as president of the United Network for Organ Sharing and president of the Society of Black Academic Surgeons, and as a member of the Council and of the Public Policy Committee of the American Society of Transplant Surgeons.
A MESSAGE FROM ROBERT HIGGINS, MD
EXCELLENCE AND EXPERIENCE
It has been a privilege to join the dedicated team of Ohio State’s Comprehensive Transplant Center and lead a program that is part of an academic medical center regularly ranked among “America’s Best Hospitals” by U.S.News & World Report. Our continued focus on advancing transplant research, education and patient care has made Ohio State one of the pre-eminent transplant centers in the United States.
The Ohio State University Medical Center has long been a nationally recognized leader in transplantation. We have one of the largest programs in the country and the only adult transplant center in central Ohio. Our survival rates for transplant patients meet or exceed national benchmarks, which is a testimony to our commitment to providing the best care possible to each patient we treat.
Transplantation is a unique field in medicine. Although our team has a wealth of expertise and experience, our ability to improve people’s lives does not rest solely in our hands. We rely on the generosity of others who have made the profound and personal choice to become an organ donor, either in life or in death. To those considering registering as an organ donor or becoming a living donor, I hope this booklet answers your questions, addresses your concerns and helps you make a well-informed decision.
Since 1967, we have performed more than 7,000 lifesaving transplants, including kidney, living donor kidney, liver, pancreas, kidney-pancreas, heart and lung transplants for patients across the United States. As one of the world’s busiest kidney-pancreas centers and one of the few sites in North America approved to process pancreatic islet cells for transplants that may cure type 1 diabetes, Ohio State remains at the forefront of transplant research and care. Each year, more than 360 people receive the gift of life – a transplant at Ohio State’s Medical Center.
Ohio State has the only adult transplant center in central Ohio, which means that our patients count on us to deliver quality transplant care close to home. To those considering Ohio State for their transplant care, know that we’ll be with you every step of the way. We will make sure you are prepared for your transplant mentally and physically, and that you and your family always stay well-informed. After your transplant, we’ll support you with the resources you need to maintain good health and outstanding quality of life. If you have additional questions about transplant surgery and care at Ohio State, or have questions about organ donation, I encourage you to contact our Comprehensive Transplant Center for more information. We’ll always be here when you need us.
Robert Higgins, MD, MSHA John H. and Mildred C. Lumley Medical Research Chair Director, Comprehensive Transplant Center
WHO’S ON OUR TEAM The transplant team at Ohio State’s Comprehensive Transplant Center is a unique blend of professionals leading their fields, all specialized in transplant medicine. Our team practices a patient-centered model of care available at few other centers around the world. We help patients manage their care before, during and after their transplants. Transplant specialist: This doctor specializes in your specific type of transplant and will complete your physical exam and prepare you for transplant.
Social workers/Psychologists: These professionals meet with you to evaluate your psychological readiness for transplantation.
Transplant surgeon: This doctor will perform your transplant surgery, discuss the risks and benefits of surgery and explain what to expect after your transplant.
Transplant pharmacist: A transplant pharmacist works closely with your transplant physician to help manage your medications and answer medication questions.
Infectious disease physician: This doctor specializes in reducing your risk of infection during and after transplant.
Pharmacy patient assistance coordinator: This coordinator offers medication assistance to patients who have high co-pays or no prescription drug coverage.
Transplant coordinators: These nurses will be your primary point of contact, assisting you throughout your transplant experience.
Living donor advocate: The living donor advocate meets with living donor candidates confidentially to discuss the donation process.
Advanced practice nurses: Advanced practice nurses work closely with your physician to help ensure continuity of care throughout your inpatient and outpatient experience.
TRANSPLANT FIRSTS AT OHIO STATE Since 1967, The Ohio State University Comprehensive Transplant Center has performed more than 7,000 lifesaving transplants, including kidney, living donor kidney, liver, pancreas, kidney-pancreas, heart and lung transplants for patients across the United States. 1967: 1982: 1984: 1985: 1986: 1988: 1996: 1998: 1999: 2005:
Kidney – First solid organ transplant at Ohio State Ohio State is one of five centers nationwide to study cyclosporine, an immunosuppressant that revolutionized transplantation Liver – First in Ohio Pancreas Heart Kidney/Pancreas Living kidney Lung Double lung Heart/Double lung
Paired, non-related, living kidney transplant
TRANSPLANTATION STARTS WITH DONATION UNDERSTANDING THE NEED: DONATION STATISTICS • • • • • • • •
Nationally, nearly 30,000 transplants are performed each year, including more than 6,000 living donor transplants, but the number of patients waiting significantly outpaces the number of organs available. More than 95 percent of American adults approve of donation as a viable, life-giving practice, but only 52 percent of Ohioans are registered donors. Approximately 18 people die each day waiting for an organ transplant; every 48 hours, an Ohioan dies waiting for a lifesaving transplant. The national waiting list for organ transplants is growing at an alarming rate, now including more than 110,000 individuals. In Ohio, more than 3,300 people – 500 in central Ohio – are waiting for an organ transplant at any time, and hundreds more await tissue transplants. A single donor can potentially save the lives of eight people and enhance the lives of up to 50 more by donating vital organs and tissue. The kidney is the organ most commonly transplanted and most commonly needed. Each year, more than 1 million Americans receive a donated tissue transplant.
DON’T FORGET TO TELL YOUR FAMILY! ON THE RECORD: BECOMING AN ORGAN DONOR More than 110,000 Americans are waiting for a lifesaving transplant today. They are waiting for someone like you to say “yes” to donation. Registering with the Ohio Donor Registry means that upon your death, you agree to donate organs and tissue that could save up to eight lives and heal 50 more. Transplantation is now considered a standard medical treatment for a wide variety of conditions, but unless you register to be a donor, the use of your organs and tissue for lifesaving transplants is not possible. It’s often not comfortable to consider your own death, but this single decision can help you create something positive from a tragic situation.
THREE WAYS TO REGISTER: • • •
Joining the Ohio Donor Registry ensures that your wish to be a donor will be carried out, but it’s also important to talk to your family to make them aware of your desire to be an organ and tissue donor. This gives your family the opportunity to become comfortable with your decision and help honor your wishes if you are eligable to be a donor.
Register online at lifelineofohio.org. Agree to become an organ donor when you visit the Ohio Bureau of Motor Vehicles to receive or renew your driver’s license or state identification card. Call 800-525-5667 to request a mail-in Ohio Donor Registry enrollment form.
MYTHBUSTERS: THE FACTS OF ORGAN DONATION
LIFELINE OF OHIO
If the hospital knows I’m an organ donor, they will not work as hard to save my life.
If you are taken to the hospital after an accident or injury, it is the hospital’s number one priority to save your life. Your status as a donor is not even considered until every effort has been made to try to save your life and death has been declared. In fact, the hospital has no record of your status as a donor and has no access to the Ohio Donor Registry.
The Organ Procurement Transplant Network, which is operated by the U.S. Department of Health and Human Services, oversees the nationwide donation of human organs for transplant and is responsible for ensuring that organs are shared safely, equitably and ethically.
MYTH: FACT: 6
I’m too old to be an organ and tissue donor. Your age or health should not prevent you from registering to be an organ, eye or tissue donor. Anyone can be a potential donor, regardless of age, race or overall health. The oldest organ donor on record was 92.
Every death can result in a donation. Only about 1 out of 100 individuals in the United States will die through the process of brain death that allows for organ donation. (Unlike organ donations, tissue donations are not reliant on brain death.) The extremely small number of potential organ donors makes it crucial that every person who wants to be a donor sign up with the Ohio Donor Registry. If an individual dies and is not in the Ohio Donor Registry, the next-of-kin must make the decision regarding donation. Families faced with the sudden, traumatic loss of a loved one will sometimes not agree to donation, even if the loved one wanted to be a donor. My religion does not permit organ donation. All major religions practiced in the United States support organ and tissue donation and consider it a generous act of caring. Speak with your religious leader about donation.
If my organs are used, it will cost my family money. If you decide to be an organ and tissue donor, your family will not have to pay for any medical expenses associated with the donation. Rich and famous people get priority access to organs. When it comes to waiting for an organ transplant, everyone is equal. Wealthy or famous individuals can not and do not get priority placement on the national transplant waiting list. Only factors such as blood type, body size, geographic location, severity of illness and length of time on the waiting list are used to determine the best candidate for an organ. Organ donors cannot have an open-casket funeral. If you and your family were planning on an open-casket funeral, these plans should not be affected by organ and tissue donation. Organ, eye and tissue donors are heroes and are treated as such. The medical professionals who perform the recovery surgeries treat donors with the utmost respect. I don’t need to register. My family knows I want to donate. Family members can often have differing views about organ donation, which can lead to conflict over whether or not to allow your organs and tissue to be used for transplant if you have not declared your intent by joining the Ohio Donor Registry. When you register to become an organ and tissue donor, you are making a legal advance directive and, even after your death, your wishes will be honored if donation is possible. It’s important to talk about your decision with your family to make sure they are prepared to help honor your decision at the time of your death.
This nationwide network is divided into 58 donation service areas, including Puerto Rico. Each of these areas is served by a designated organ procurement organization, like Lifeline of Ohio, which provides donation services to 72 hospitals in 37 counties in central and southeastern Ohio and two counties in West Virginia, 24 hours a day, 365 days a year. The Centers for Medicare and Medicaid Services requires hospitals to notify organ procurement organizations like Lifeline of Ohio for every death. Not every death results in donation; statistically, fewer than 300 Ohioans a year become organ donors at the time of their deaths. The need for organs is great and the donation process must move rapidly, so Lifeline of Ohio personnel work around the clock to evaluate the medical suitability of each potential organ and tissue donor.
PARTNERS IN TRANSPLANT: OSU MEDICAL CENTER AND LIFELINE OF OHIO Although The Ohio State University Medical Center and Lifeline of Ohio work in close coordination during the transplant process, each organization has very separate and clearly defined responsibilities with regard to organ donation. •
Organ procurement organizations like Lifeline of Ohio are the only organizations that have access to the Ohio Donor Registry and the National Transplant Waiting List managed by the United Network for Organ Sharing (UNOS).
By law, Lifeline of Ohio is contacted by a hospital when a patient in its service area has died, so they can evaluate the individual’s potential to donate organs and tissue.
Lifeline of Ohio then facilitates the placement of the organs with waiting recipients and manages the organ recovery process, which includes delivery to the transplant centers.
Neither the donor’s hospital nor the transplant center is involved in the donation process.
OSU Medical Center does not have access to the Ohio Donor Registry or the UNOS waiting list, and is not involved in the organ donation process at any point before a transplant is scheduled.
If the individual is a candidate for donation, Lifeline of Ohio personnel access the Ohio Donor Registry to check if the person is a registered organ donor. If the person is not registered, the individual’s next of kin must give the authorization to donate. Lifeline of Ohio procurement coordinators then administer the donation of the organs to patients on the national waiting list maintained by the United Network for Organ Sharing. They coordinate the required immunological testing, the surgical recovery of the organs from the donor and the preservation of the organs during their transport to designated transplant centers like Ohio State’s Comprehensive Transplant Center. Lifeline of Ohio also honors the gifts of life shared by donors by staying connected to donor families, facilitating communication between transplant recipients and the families of the donors and coordinating the creation of the Donor Memorial Quilts that travel throughout the area. The Lifeline of Ohio Donor Memorial at 770 Kinnear Road in Columbus is a permanent and public tribute to the heroes of donation: the local men, women and children who shared the gift of life and made a difference at the time of their death. Lifeline of Ohio, established in 1984, is an independent, non-profit agency. For more information about Lifeline of Ohio, the donation process and registering as an organ donor, visit www.lifelineofohio.org.
THE TRANSPLANT WAIT LIST: HOW IT WORKS
SHARING LIFE: LIVING KIDNEY DONATION
When it has been determined that a person is in end-stage organ failure and the only hope is an organ transplant, the patient’s doctor or the patient can contact Ohio State’s Comprehensive Transplant Center to arrange for an evaluation. The patient will complete a series of medical and psychological tests before he or she is added to the transplant wait list.
The best option for a patient waiting for a kidney is to receive one from a living donor. Wait times for patients who have living donors are reduced from years to months, and transplant recipients have better outcomes with kidneys from living donors. We encourage all patients waiting for a kidney transplant to seek a living donor. Living donors do not have to be blood relatives; they can be spouses, in-laws, friends, co-workers or fellow church members.
The recipient generally pays the cost of the living donor’s evaluation, testing and surgery, and therefore, the donor should not incur any medical expenses. However, time off from work and travel expenses need to be considered. A new Ohio law gives state employees time off from work for donating.
If you want to be evaluated for a potential transplant and added to Ohio State’s waiting list, or have interest in becoming a living kidney donor, please contact the appropriate area below.
Screenings before transplant ensure that a patient is in good medical and psychological health and that he or she has the motivation and support to comply with treatment plans. People who generally are not candidates include those with metastatic cancer, active drug or alcohol abuse, active infection or severe medical problems. Once all of the pre-transplant requirements are met, Ohio State’s Comprehensive Transplant Center will add the patient’s medical profile to the United Network for Organ Sharing (UNOS) National Transplant Waiting List. This confidential database is constantly updated. Once an organ has been donated, a member of Lifeline of Ohio enters the donor’s characteristics into the UNOS system. The system compares the donor’s medical profile to the profiles of patients on the wait list and generates a list of candidates in ranked order. The amount of time an individual waits for a transplant can range from a few hours to several years. The prospective recipient then goes directly to the OSU Comprehensive Transplant Center to receive his or her transplant. Following a transplant, recovery times can vary from a few days to several months. To ensure the body accepts the new organ, recipients need to take immunosuppressive drugs daily. Throughout the transplant process, Ohio State’s team of healthcare specialists works with each patient and his or her family to share as much information as possible about the transplant process, the surgery and follow-up care, including medications. All patients are provided with a comprehensive transplant notebook containing written patient education materials for reference at home. Around-the-clock access to the transplant team is provided to all patients so that questions may be addressed in a timely manner.
Registering in the Ohio Donor Registry does not mean you will be called for living donation. Unlike donations made after your death, which are managed through organizations like Lifeline of Ohio, living donations are managed by transplant centers like Ohio State. Ohio State’s Comprehensive Transplant Center operates one of the largest kidney transplant programs in the country and is regularly recognized by U.S.News & World Report as a top hospital for patients with kidney disease. Our transplant surgeons perform more than 250 kidney transplants per year, many of which are from living donors. Donating a kidney is safe, and living donors will not experience a loss of health or quality of life as a result of living with a single kidney.
QUALIFICATIONS FOR LIVING DONORS To qualify as a living donor, an individual must be physically fit, in good general health and free from high blood pressure, diabetes, cancer, kidney disease and heart disease. Individuals considered for living donation are usually between 18-60 years of age. Gender and race are not factors in determining a successful match.
Ohio State’s transplant team maintains an active role in each patient’s post-transplant life. Patients have an assigned coordinator and surgeon to ensure they receive personalized and coordinated follow-up care. We are also in regular communication with a patient’s family physician.
The living donor must first undergo a blood test to determine blood type compatibility with the recipient. If the donor and recipient have compatible blood types, the donor undergoes a medical history review and a complete physical examination, in addition to tests to ensure compatibility. The donor and recipient may also have to complete a psychological evaluation.
If you or a loved one is in need of a transplant, please contact the OSU Comprehensive Transplant Center for more information or to schedule an evaluation.
The decision to become a living donor is a voluntary one, and the donor may change his or her mind at any time during the process. The donor’s decision and reasons are kept confidential. Education is the most important component in the decision to become a living donor. If you’re considering becoming a living donor, you can speak with a living donor coordinator at Ohio State’s Comprehensive Transplant Center by calling 800-293-8965.
If you have general questions about transplantation, please contact the OSU Comprehensive Transplant Center at 855-750-7171.
Kidney, Liver and Pancreas Transplant The Ohio State University Medical Center 770 Kinnear Road, Suite 100 Columbus, OH 43212 614-293-6724 or 800-293-8965 Heart Transplant The Ohio State University Medical Center 452 W. 10th Ave., Suite 5216 Columbus, OH 43210 614-293-3787 or 800-538-1886
EXPRESSIONS OF GRATITUDE: LIVES SAVED BY TRANSPLANT
GEORGE HANNAH – COLUMBUS, OHIO
BENITA SMITH – COLUMBUS, OHIO
JOE KARL – THORNVILLE, OHIO
JOE MALCOLM – FRENCH CREEK, WV
MARTIDA HUMPHREY – TOLEDO, OHIO
GEORGIA MILBURN – DAYTON, OHIO
After a primary care visit in 2007 resulted in a referral to a nephrologist, George learned his kidneys were failing. “They gave me a year before I would have to go on dialysis,” says George. “It didn’t settle in until probably later that evening. I didn’t know what to expect. At first I was thinking it was fatal.”
For more than a decade, Benita lived with degenerative kidney disease. In 2004, her doctor informed her that she would need to begin dialysis and ultimately consider a kidney transplant.
Joe was caught completely off guard when he received the news that he would need a liver transplant. “I went to a different hospital first. The doctors there told me there was nothing they could do; that I was going to die.” Joe told his primary care doctor he wanted a second opinion and was referred to Dr. Robert Kirkpatrick at OSU Medical Center.
Joe became violently ill at work. After going to the hospital for evaluation and being diagnosed with Hepatitis C due to non-alcoholic cirrhosis of the liver, Joe’s doctors advised him to visit Ohio State’s Comprehensive Transplant Center, where he was added to the transplant wait list. Joe received a donor liver 429 days later in August 1998.
“I can’t explain how it feels to get that call,” says Georgia of the news that her 10-year journey from diagnosis of an irregular heartbeat to congestive heart failure was drawing to a close. Georgia underwent her first heart procedure in 2001, for a pacemaker to control her irregular heartbeat. Eventually she developed congestive heart failure that required two open heart surgeries.
“I told Dr. Kirkpatrick the last practitioner said I was going to die, and he said, ‘Did you hear me say you were going to die?’” Three years later, his future is bright. “If I had to do it all over again, I’d want to do it the same way. I’d want the same team of doctors and everything.”
Joe asked his wife to photograph him throughout his illness, beginning with the day he left home to stay at Ohio State because he was too ill to live at home and ending with his recovery back home. When he tells people his story, the photos help people realize how sick he was before the transplant and how he has regained his health since that time. “I thank the Lord every day that I can wake up and see the sky and the trees,” Joe says. “I’m proof that organ donation works.”
Martida has endured a lifelong struggle with diabetes. She received a kidney and a pancreas in 1994 after two-and-a-half years on a wait list and dwindling options for dialysis. Patients waiting for a kidney transplant often undergo dialysis, but in 1994 there weren’t many options for accessing the veins and arteries, and Martida’s blood vessels were no longer cooperating with the treatment. “I was running out of options,” says Martida. “My doctor said, ‘Let’s get this show on the road!’”
An assessment and conversation with the specialists at Ohio State’s Comprehensive Transplant Center allayed George’s fears. He learned that through dialysis and transplant he could lead a normal life again. “I would recommend Ohio State to anybody,” shares George. “Talking to people eased things up.”
On May 18, 2010, George’s stepdaughter, Tammy, chose to become a living donor, saving George from having to wait on a list for a transplant. George’s experience has given him a new outlook on organ donation. “There are a lot of people you never really think about who need organs, more than you can even imagine.”
What Benita thought would be a long process turned into an immediate need. Just two months later, her health had degenerated to the point where her doctor said a transplant was imminent. Benita’s sister stepped up to the plate. “I didn’t even have to ask her. She just told me she’d be my donor,” says Benita. On Dec. 2, 2005, Benita received her sister’s kidney at Ohio State’s Medical Center and spent the next few weeks after her transplant recovering at her sister’s house. “Everything went smoothly with my transplant. My sister jokes to this day that it was easier to donate a kidney to me than to help watch my kids while I was on dialysis,” she laughs.
Though Joe’s transplant recovery was not easy, he is now able to look back on the experience and give thanks for the decision his donor made. When asked what advice he would give to someone considering becoming an organ donor, Joe says, “Go for it! I mean, it can’t hurt you!”
And that’s precisely what they did after a non-living donor proved to be a match. Martida’s first kidney transplant lasted 16 years and now she’s waiting for a second. Though back on dialysis, she remains hopeful, and serves as a mentor for others at her dialysis center. “You can save somebody’s life by becoming a donor,” shares Martida, and she’s optimistic that someone’s decision to donate life will save hers once again.
“I’ll never forget what the doctor told me,” says Georgia. “She said, ‘You need a heart transplant, like, yesterday.’” That was late June 2009. On Dec. 22, Georgia was approved to join the waiting list for a heart. The following April, she got the phone call that changed her life. “I was so full of joy and anticipation,” explains Georgia, “but at the same time I kept thinking that another family was grieving and suffering over the loss of their loved one. To this day, I still have mixed emotions.”
COMPREHENSIVE TRANSPLANT CENTER
Kidney, Liver and Pancreas Transplant 770 Kinnear Road, Suite 100 Columbus, OH 43212 614-293-6724 or 800-293-8965
770 Kinnear Road, Suite 200 Columbus, OH 43212 800-525-5667 lifelineofohio.org
Heart Transplant 452 W. 10th Ave., Suite 5216 Columbus, OH 43210 614-293-3787 or 800-538-1886 medicalcenter.osu.edu/go/transplant
ÂŠ 2011 The Ohio State University Medical Center