There are many ways to celebrate a 21st birthday, and being holed up in a hospital room isn’t one of them. That’s exactly how Jeffrey Montalvo spent his 21st birthday, within the sanitary walls of a hospital, where for over five months he lived and waited for a new heart.
At 19-years-old Montalvo suffered a rare and complicated diagnosis: non-compaction cardiomyopathy. Montalvo was put on a left ventricular assist device (LVAD), and was added to a long list of organ recipients.
For the next year Montalvo struggled to live a normal life.
“I was 19 and I had a machine on me and I couldn’t do 19 year old stuff,” says Montalvo. “The doctors make it seem like you can but it’s all mental. If you’re not mentally strong it’s not a good situation for anybody.”
It was just over a year later when Montalvo started having complications with the LVAD. He was quickly hospitalized, and his name went to the top of the organ recipient list. He was now in desperate need of a heart.
Montalvo’s mother, Clarisa Cardona, says waiting was the hardest part. She explains, “Waiting…as a parent, it’s very hard. You worry. You try not to worry, and stay positive, but it’s quite a rollercoaster. You have to stay positive. You can’t let the negative get in, because it’s a long wait.”
After one false call and months of waiting, Montalvo finally received the phone call.
“With the false call we felt like it was off. Like it wasn’t the right timing,” says Montalvo, “It was almost like a relief, because we felt it wasn’t right. I don’t know how to explain it. It was weird. But then when I got the second call, they said ‘this is it’ and I said ‘if this is right it’s right.’”
It turned out that it was right. Montalvo received his new heart at Hartford hospital on Saturday, November 3rd, 2012, and has had no rejection since. Even though he will be on medication the rest of his life, Montalvo says he finally feels “back to normal.”
LifeChoice was the organization that helped Montalvo find his heart, that helped him get “back to normal.” It is a federally designated, non-profit organ procurement organization (OPO) for six counties in Connecticut and three counties in Western Massachusetts with a combined population of 2.3 million people.
Caitlyn Bernabucci is the public education and communications specialist for LifeChoice. She says that unfortunately, there are a lot of people out there who are not only holding onto the possibility getting “back to normal” but who are simply looking to hold onto their life at all.
Right now over 120,000 people, nationally, are waiting for an organ transplant. Of that, over 22,000 are Latino. Fifty-five percent of the waiting list is made up of minorities.
Bernabucci explains that one of the reasons that we see such a high need in minority communities is because some diseases affect those populations at higher rates. This leads many people to believe that Latinos don’t tend to be organ donors. Even Montalvo’s mother, Clarisa Cardova, says, “They say it’s better to have a donor be the same ethnicity, but it’s hard…it’s hard because a lot of Latinos aren’t donors.”
However, Bernabucci says that this isn’t really true, and explains, “Interestingly, Hispanics tend to donate at a very high rate, because I think they are focused on community and understanding of helping each other. There is a very high donation rate among Hispanics and Latinos but there is also an incredible need.”
According to most recent statistics (www.organdonor.gov), minorities make up 36 percent of the U.S. population, and represent 32 percent of living and deceased organ donors. However, they comprise 56 percent of individuals on the U.S. transplant waiting list.
“It’s really important for people to know that people, both races and ethnicities, tend to donate in proportion to their representation in the population,” says Bernabucci.
Jennifer Cray, from New England Organ Bank (NEOB), who works closely with the Rhode Island Organ Donor Awareness Coalition, believes it’s important for everybody to become organ donors, not just minorities.
“When we are considering the allocation of organs and trying to match donors with good recipients we don’t consider race and ethnicity as one of the matching criteria because people of all different races and backgrounds can match each other,” Cray says. “Some of the criteria that we look at with blood type and tissue markers tend to be more similar among people of the same ethnicity and so sometimes there could be potential for a better match, but we stress to the public that a greater diversity in donors will increase access to transplantation really to everyone.”
Montalvo said he didn’t find it especially difficult as a minority when he was going through the organ transplant process. Although, he believes that there are myths within his Latino community that deter some people from registering as a donor.
“Minorities tend to believe myths about organ donations,” says Montalvo. “Growing up they’ve heard the same thing, that they would take life support off because you’re an organ donor. Even family members of mine still believe it even after seeing what I went through.”
“The biggest concern that people have regarding donation is their health care,” says Bernabucci. “They are worried that if they are a registered donor that hospital or the EMTs won’t work as hard to save their life and that’s very much not the truth. Health care professionals’ number one priority is to save the life of their patient.”
There are other myths that people hold about organ donation, and, according to Cray, a lot of those are based around fear and lack of information. Both Bernabucci’s organization, LifeChoice, and Cray’s, NEOB, work to educate the public about organ donation.
“I think donation is one of the greatest gifts that you can give,” says Bernabucci. “One donor can help more than 50 people with the donation of organs and tissue.”
Montalvo’s mother, Cardova, agrees with Bernabucci’s sentiment. She says, “I still have my son. He is still alive because of someone not being selfish and being a donor. My son’s donor is a hero.”
Montalvo says his mother is most definitely right, that he considers his donor a hero as well, and says, “Why wouldn’t you want to save someone else’s life? Why wouldn’t you want to be a hero after you’re gone?”
Organ donation is obviously a very personal end of life choice, but the choice that Montalvo’s donor made has been embraced as such a grand altruistic gesture, as a gift that his mother says “can never be repaid.”
“I kiss my son’s chest,” says Cardova. “I kiss my son’s chest and I say, ‘Thank you.””