Q: For nine months I have been on a waiting list for a kidney transplant while being treated for renal failure with hemodialysis. Why does it take so long?
A: Delays in the transplantation of kidneys, as well as hearts and livers, are due to a shortage of organs -- a shortage called a public health crisis. Nationwide, more than 18,000 people were waiting for a kidney in February 1991; about 150 are presently on the waiting list in Maryland. The time on the waiting list varies across the country; the average wait is more than a year but may be as long as five years. In Maryland, the average wait is a year.
The length of the wait also depends on the transplant recipient's blood type and potential for rejecting the new kidney. For example, although type O blood is the most common, there are more type A donors. It is more difficult to find a properly matched kidney for individuals who have previously rejected a kidney transplant or had blood transfusions or multiple pregnancies.
The shortage of organs results in part from "harvest" requirements. Donors must be patients whose organs are healthy but whose brains have stopped functioning, and such patients are not common. Other causes are the hesitancy of physicians to ask next of kin for permission to recover organs from patients, and the unwillingness of families to consent to donation.
OC Families are far more willing to consent to organ donation when
they know that's the desire of the deceased relative. Individuals interested in donating their organs can make their wishes known when they obtain or renew their Maryland driver's license or they can fill out a donor card. Even so, organ recovery will not take place without the consent of family members. Therefore, it is important for people to tell family members that they want to donate.
The Transplant Resource Center of Maryland at (301) 328-3626 can answer questions and provide a brochure on organ and tissue donations.
Q: I have read about a push to do genetic studies on hair and bone samples from Abraham Lincoln to determine whether he had Marfan syndrome, an effort apparently based on Lincoln's tall and gangly appearance. Because I am also tall and thin, I wonder whether I might have Marfan syndrome. What good would it do me to know?
A: Marfan syndrome is an inherited disorder of the small fibrils that form a support for connective tissue in the body. Abnormalities affect the eyes and the skeletal and cardiovascular systems. Marfan patients may be severely nearsighted and have an increased risk of retinal detachment and dislocation of the lens. People with Marfan syndrome are generally tall and slender. Arms, legs, fingers and toes are unusually long; joints are abnormally flexible and more prone to dislocation.
The most serious feature of Marfan syndrome is its effects on the aorta (a large blood vessel) and the heart. Individuals with this syndrome have about two-thirds the
normal life expectancy, and about 85 percent of their deaths are caused by cardiovascular complications. Progressive enlargement (aneurysm) of the aorta can occur slowly and without symptoms. Weakness in the wall of the aorta may lead to tears or sudden rupture. Marfan syndrome also causes serious abnormalities in the flow of blood across heart valves.
It is worth knowing whether you have Marfan syndrome because some preventive measures may protect against several of its worst consequences. Medication to control blood pressure may delay or prevent aortic dissection. Precautions can be taken to avoid infection of damaged heart valves, and the size of the aorta can determine when elective replacement of a portion of the aorta and the aortic valve can improve heart function and prevent aortic rupture. Also, a diagnosis of Marfan can help patients make informed decisions about family planning.
Dr. Margolis is professor of medicine and biological chemistry at the Johns Hopkins School of Medicine and associate dean for faculty affairs at the school.