“Wonderful” to be alive

​A.J. Reyes, a heart transplant recipient (Photo courtesy of California Transplant Donor Network)

Today, he can run more than 13 miles in a race, thanks to a strong will and body. But A.J. Reyes has someone else to thank for that–the person who gave him a heart.

Struck down with a virus, which attacked his heart, he, like many in the Filipino community, needed a transplant or he would likely die.  He was lucky, because in late 2010 he received that new heart.

Now the 28-year-old wants to make sure others in the community know that deciding to register as an organ and tissue donor really does save and improve lives.

But today many patients face a waiting game, as their lives hang in the balance, because many Filipinos still believe giving your organs to others after you die is “taboo.” Many reject the idea, thinking “they need to go into the afterlife whole.”

Too few people in Asian communities register as donors. That means more people are forced to wait for a transplant. 

In San Mateo County, California, alone 638 people were on the list for an organ transplant as of December 2012. Each day, without enough donors, 18 people nationally will die waiting.

Like A.J., many of the people waiting are of Asian descent. Of the thousands of people waiting for hearts, livers or other organs at one of the four San Francisco Bay Area transplant centers, more than 2,300 are of Asian heritage; and the list grows as the population grows.


Asian Pacific Americans make up seven percent of those on the organ waiting list nationally, but only three percent of organ donors in 2012 were Asian Pacific Americans.

Too Few Donors

According to the 2010 Census, the greater San Francisco Bay Area is home to 463,458 Filipino Americans and multiracial Filipino Americans.  Santa Clara County continued to have the largest concentration. Daly City has the highest concentration of Filipino Americans, at 35 percent, of any municipality in the United States.

But as the population grows, the difference between the number of Asians waiting and those agreeing to become donors grows wider.  Asian Pacific Americans make up seven percent of those on the organ waiting list nationally, but only three percent of organ donors in 2012 were Asian Pacific Americans.

“For whatever reason, the number of Asians, particularly Filipinos, when presented with the opportunity to register and become donors, choose not to do so,” says Sandy Andrada, community education manager for the California Transplant Donor Network.  

That group is responsible for educating Northern Californians and Northern Nevadans about becoming a donor. They also work with families who have been told their loved one will not survive--to educate them about the opportunity to donate. 

“Imagine being faced with the news that your loved one will not survive a medical crisis,” says Andrada.  “And then you have to decide if they would have wanted to become a donor.  It’s a burden for a family.  Better that you make your own decision now about donation and just let their family members know what you want to have happen.”

Source of Comfort

By agreeing to become a donor and signing up at www.ctdn.org Filipinos can not only spare their family, but also comfort them in knowing they are giving a gift that will help others.  A single organ donor can save eight lives, while a tissue donor can improve lives with tissue donations, like corneas, to restore sight.

Tessa Reyes has never met the family of the person who donated the heart that saved her young son’s life. A.J. overcame being a premature baby and then asthma until he was seven years old.  

Then he went to college.  He grew sicker as the virus ravaged his heart. A.J. went into the hospital and, eventually, on to a mechanical pump to do the work of his damaged heart.

“I was so afraid that he was going to die,” says the nurse and educator, recalling how she watched her fever-stricken son in the hospital bed.

Today Tessa volunteers to talk to groups in the Filipino community about donation. “I tell everyone that there is no need for organs in the afterlife.  But people do need them here.”

Tessa Reyes, A.J.'s mom (Photo courtesy of California Transplant Donor Network)

Since the transplant life for A.J. has been “crazy” in a good way. “ It has definitely turned around.  I finally found out what it is like to be healthy again.” He has really given life a run for its money. While he used to run in high school, sickness took the life out of him.

“I now run half marathons (a bit more than 13 miles),” he says.  “Three so far, and I will be running again in May and then again in August.”

 “Once when I was running at Mile 11, my friends asked why I was doing this.  I told them, ‘I am doing it to honor my donor.’ I started tearing up.  I don’t want this gift to be made in vain.”

That’s why AJ is happy to lend his face to supporting donation in the Filipino community as a volunteer with his mother for CTDN. 

“How wonderful it is that my donor’s gift so turned around my life,” he says.

 

Anthony Borders is the Communications Manager of the California Transplant Donor Network.