Legislation is taking too long

“The legislation is there for so long and no one seems to be working on it,” said Germaine Allum, the Trinidadian who was involved in historic simultaneous triple swap surgery at John Hopkins Comprehensive Transplant Centre on July 28.

She was discharged from the facility on August 8 and told Newsday last Thursday that she is fine and resting. She is not on painkillers and was advised to “take it easy” for two weeks following the transplant. Allum said the Human Tissue Transplant Bill (2000) will help ease the plight of renal failure patients. She said many people want to donate their kidneys including distant relatives and close friends. “I don’t see what the problem is, there is no ethical issue to be resolved,” she said. Describing the pre-surgery procedure at John Hopkins she said a complete medical assessment was done. “They want to ensure no surprises five and ten years down the road to put you in problems.” The donor must be in good health with no ailments such as heart problems or diabetes. A psychological evaluation is also done. After fulfilling the requirements, the risks associated with the surgery and the entire procedure is explained to the donor.

Allum is aware that systems must be in place before kidneys can be donated but she said there are no grounds for the legislation to be held back. In the meantime, she said only people who are live-related donors (siblings, a spouse) can get a transplant “while other people pay the price and go abroad.” She is speaking from experience because she did not have a live-related donor. Allum said long term dialysis is more expensive than receiving a transplant and it put a strain on the body. “It is a temporary solution until you get a transplant.” Allum said a transplant operation is not a solution, it is another form of treatment, especially for younger people “who want to have a future to look forward to.” Dialysis requires lifestyle changes and places limitations on activities. Allum, an accountant with Ernst and Young, could only work a few days because she had dialysis three times every week. Eventually she went on sick leave. The treatment also impacted on her social life. Even if she went out to a party she had to restrict her fluids to Coke and water. People on dialysis cannot consume alcohol.  Hot days were “torture” and she could not even bathe at the beach because of a tube in her shoulder. “When you go out to eat, you are limited in what you can eat.”

Allum and the other transplant patients are being monitored for the next six weeks. Blood testing is done every week and adjustments made in her medication. She will have to take medication for the rest of her life but she is not bothered. “There are certain things you have to do every day, I rather that than dialysis, that’s for sure.”  She will always be grateful to Connie Dick, the 41 year-old woman from Pennsylvania whose kidney she received. While she cannot recall what she spoke about with Dick, donors and recipients met on August 1 and “swapped stories about what they have been through.” Allum expects to be back home in October.