Here's My Story
Allyson Frazier
I have had two successful kidney transplants. My first in 1986 was a living-related donation from my brother. I received a second kidney in 1993 from a Caucasian female organ donor. My kidneys failed me because of a disease called systemic lupus erythematosus. The two gifts of love I received enabled my life to continue so that I could continue to pursue a career in marketing, and share my experiences with and knowledge of kidney disease with other patients and their families.
My health challenges have taught me to focus on the inner strength I have from my belief in God. Daily devotion and quiet time in mediation help me to be positive and live life fully. When I feel the "load" becoming heavy or my day becoming a little hectic, I simply say to myself, "Let Go and Let God!" It's amazing how five simple words can change the course of my day and set me back on track.
I have found the key to success for people living with a chronic illness is knowing and believing that we are not alone on this journey of life and that we have a purpose and gift to give. My support system, consisting of my family, friends and medical teams in Cincinnati, Ohio and in Chicago, give me the daily support that I need to deal with the constant changes I face, and make it that much easier for me to develop my career and live my life to the fullest.
Cliff Stewart
In the mid-1970's, I was diagnosed with sarcoidosis, which causes inflammation and subsequent scarring of the lung tissue. There is no cure and doctors don't know the cause.
By 1991, the inflammation and scarring episodes were happening so often that I began looking for help anywhere and everywhere. In 1993, I began seeing a doctor at the University of Wisconsin. When he first saw my chest x-rays, he gasped, explaining that he had never seen sarcoid cause such devastation. We discussed the possibility of a lung transplant and he explained that I would not be considered for the procedure unless his evaluation determined that I had less than a year to live. At the end of a harrowing week of tests and waiting, I was elated to learn, on May 18, 1993, that my name had been placed on the national transplant waiting list.
As I waited for a suitable donor, my condition grew worse. I was constantly connected to two tanks of oxygen, using nose tubes and a tracheal catheter. Coughing bouts occurred more frequently and with more intensity; eating and sleeping became more difficult.
Since I was no longer able to work, I tried to fight boredom by taking classes at a nearby community college and working out when I felt able, dragging two portable oxygen tanks with me wherever I went. My wife, Debra, and I sometimes could do nothing but laugh at the total insanity our lives had become.
In January 1994, I became very ill, but thank God, on the 27th of that month, a pair of lungs was found which turned out to be a perfect match for me. As amazing as it may sound, a little more than 24 hours after surgery, I was taken off the respirator and took my first post-surgery walk just a few hours after that. I had no shortness of breath or coughing. Late that night, unable to relax and sleep, I got out of bed and jogged and danced in place when no one would take me on another walk! Nineteen days after surgery I was released from the hospital and soon returned home. Six months later, I returned to full duty with the Chicago Police Department.
From the beginning, I was told that a transplant was not a cure for my condition, but so far I continue to feel great. With my wife and daughter by my side throughout this ordeal, I learned to face fear, to be patient and to be thankful . All of us learned to accept a gift that we can never hope to repay--the gift of a second chance at life.
Myths About Organ Donation
MYTH: If I am in an accident and the hospital knows that I want to be a donor, the doctors will let me die.
FACT: Donation is not considered until all efforts to save a person have failed. Additionally, transplant surgeons and their staff are, by law, forbidden from taking part in a patient's care prior to organ donation. They only become involved after the person is declared dead and permission has been given by the family for organ donation.
MYTH: Whites are helped more than blacks.
FACT: Absolutely not. In fact, nine out of ten African-Americans who undergo organ transplant surgery receive an organ from a Caucasian donor. In addition, a computer system fairly matches organs with recipients' based on the recipients' time on an organ waiting list, the severity of the recipients' condition, blood type, size of the donated organ and, in some cases, the donor's genetic make-up.
MYTH: Wealthy and famous people are able to buy their way to a higher spot on waiting lists. Take Mickey Mantle for example. A match was found for him within days of being put on the waiting list.
FACT: Anyone who needs an organ transplant is eligible for one, but you cannot buy a higher spot on waiting lists. Mickey Mantle got his transplant so quickly because his blood type was the most common and because he was among the sickest patients waiting in his area.
MYTH: As African-American organ donors, our organs will go to white folks and never other African-Americans.
FACT: If you donate an organ, such as a kidney, for which genetic make-up is a critical factor in transplantation, then it is probable, though not guaranteed, that your organ will go to another African-American. In addition, African-Americans make up 36 percent of those on organ waiting lists in Illinois. Therefore, even if you don't donate an organ that needs to be genetically matched, the recipient may still be an African-American.
MYTH: African-American organ donors aren't necessarily needed.
FACT: African-Americans make up 36 percent of those on waiting lists in Illinois. Everyone on the waiting lists can benefit from more organ donors. However, African-Americans on waiting lists for kidneys will most likely benefit from African-American donors, because transplantation often is enhanced by matching organs between members of the same ethnic and racial groups.
Questions and Answers
THE WAITING LIST
How are organ recipients selected?
The National Transplant Act of 1984 established full and equal access to donated organs and tissues for all potential recipients on the basis of need and availability, not race or wealth. A national computer system matches donated organs to potential recipients nationwide by using a point system, developed by the United Network for Organ Sharing (UNOS). The criteria included blood type, medical urgency, and time on the waiting list. For heart, liver and lung transplants, criteria also include the size of the organ and the distance between the hospital and transplant center. Tissue typing and other laboratory tests are donor for all kidney transplants. This takes from eight to 12 hours. Tissue typing also may be required for other types of transplants.
How does someone get on the waiting list for an organ transplant?
Primary care physicians refer patients to the appropriate transplant program. A team of specialists at the transplant center determines if the patient is a suitable candidate. Suitable candidates are added to the list.
ORGAN DONATION PROCEDURE
Are there rules in place to regulate the organ donation process?
The National Transplant Act of 1984 ensures that the organ donation process is fair. The Act established the National Organ Procurement and Transplant Network (OPTN) for matching donor organs to waiting patients. The OPTN is managed by UNOS, which works with local organ banks across the country to place organs.
How do physicians determine if someone is dead?
Physicians declare brain death or cardiopulmonary death based on acceptable medical standards after thorough testing and examination. Brain death occurs when brain function has permanently stopped, although the lungs and heart can continue to function with the use of mechanical devices, such as a ventilator that keeps the heart pumping and supplies oxygen and blood to the organs. Brain death is caused by serious brain trauma, such as from motor vehicle accidents, strokes, sports injuries, cerebral aneurysms and drowning. Cardiopulmonary (or biological) death is caused when the heart and lungs have permanently stopped functioning.
Under what conditions would someone be considered a potential donor?
A potential organ donor is a person, once declared dead, whose organs can be kept functioning temporarily by using a respirator. Most organ donors died from head injuries or strokes.
COSTS
Is there any cost or payment for organ donation?
No. Donor families are never charged, nor do they receive any payment or compensation, if the donor is alive or dead. Once the person is declared brain dead and the next-of-kin has consented to donation, the patient's hospital bill stops. A new bill is started with those costs going to the OPO. If a person wants to be a living donor, the recipients' insurance usually covers the medical costs for the recipient and the donor, but check with your insurance company for more details. Insurance policies vary.
