Two local organ donation recipients represented the transplant community last month at the inaugural Transplant Patient Summit in Washington, D.C.
They were joined by more than 100 other recipients from around the country who advocated for all organ donors and recipients.
Tami Sadusky of Kirkland and Molly McCarthy of Redmond, represented Washingtonian transplant recipients at the summit, which was hosted by American Society of Transplantation (AST). The summit was held from Oct. 23-24 and aimed to bring two donors or recipients from each state to the nation’s capital, where they advocated for transplant research funding and legislation.
“This initiative is a way to bring the patient’s voice into working with the professional research scientists,” Sadusky said. “It’s a force, of sorts, to raise awareness and hopefully raise funding.”
AST started the Power2Save initiative to advocate for better transplant research and for legislation that protects living organ donors. Rep. Jaime Herrera Beutler of Washington’s 3rd Congressional District has been working with the initiative to raise awareness for transplant research and her new bill, the Living Donor Protection Act of 2017.
The act aims to help organ donors by making it easier for them to get life insurance and simplifying the donation process, according to McCarthy.
“It diminishes people’s concerns about what their future holds when they’re being evaluated to be a donor,” she said.
Sadusky and McCarthy have both received multiple transplant organs and are living with suppressed immune systems — like all other transplant recipients.
“You get someone else’s organ and just like if you get a sliver, your body would recognize that as foreign,” McCarthy said. “In order to keep our organ, we have to take immunosuppressive medications, which diminishes the immune system.”
This problem makes transplant recipients more exposed to illness and infection. McCarthy has even dealt with skin cancer because she’s been immunosuppressed for 25 years.
“As long as you stay away from germs, you’re pretty ok,” she said. “Coughs, colds, flus, anything down to papercuts, it takes you longer to heal once you have them.
McCarthy said this is because transplant recipients have less to battle with than others in these scenarios.
Currently, this is simply a side-effect of receiving a transplant. The medications are balanced so that a recipient doesn’t reject the transplanted organ but also doesn’t die of a common cold, but many recipients still need new organs within a couple decades, according to Sadusky.
“Having a transplant is not a cure,” she said. “It’s a saving grace, we all get another life through it, but it’s not a cure.”
This is why the summit also focused on raising awareness and education.
“Transplantation is not a trendy disease,” Sadusky said. “So we need to make that a special effort to tell others how important it is.”
Sadusky and McCarthy both said they’re relatively healthy for transplant recipients and that many people often assume that after a transplant, they’re done with their treatment.
“I think many of my own friends’ and colleagues’ perception is that it’s a once and done, but really it’s the first step of a completely different journey,” McCarthy said. “It’s certainly a much better way to live, but yet there needs to be more research and there needs to be more awareness so that we can better treat people to keep their transplants longer.”
Sadusky and McCarthy encourage people to talk to friends and family about organ transplantation and get educated about it.
“In the days of such a shortage of donor organs, they become even more precious,” McCarthy said. “So any efforts — be they research, funding or any of those connected areas — certainly helps all of us who’ve already been transplanted and certainly helps the next generation of transplant recipients.”