Organ donation is not always easy for people to talk about. For Latinos – who are disproportionately affected by diabetes, chronic kidney disease, and other health problems that can require organ transplants – it’s increasingly important to get the word out. That’s why organ donors and recipients like Ann Lopez, Celina Lopez, Rich Ramirez, and Anissa Ayala are telling their stories. In their own words, they share what it’s like to donate or receive the greatest gift: the gift of life.

Ann Lopez, wife of comedian George Lopez, donated her kidney to her husband last year, after his doctors discovered that he was suffering from chronic kidney disease. “Chronic kidney disease is very common among everyone – twenty million Americans have it – but it is overrepresented among Hispanics,” says Dr. Joseph Vassalotti, chief medical officer at the National Kidney Foundation (www.kidney.org). “If you do have a family member who has chronic kidney disease or is on dialysis, it’s important for you to get tested, and it may be worth considering donation.” Here is Ann’s story:

We found out that George had kidney disease by accident, when he popped his Achilles tendon, and he had to have surgery. [His doctors] found out that he had 80 percent functionality in one kidney and 10 percent in another – there was no warning.
Right away, I said, “I’ll give you mine,” and he said, “Stop joking, this is serious.” It was just an automatic reflex on my part.
The odds were so against us that I would be a match; it was a million-to-one shot. For four months I would go in [to the hospital] every week. When they said that I was a match, it was unbelievable.
One interesting thing is that when you become a donor, you have your own set of physicians. And every time I went in, they would say, “Are you sure you want to do this? Are you being coerced into doing this? If you change your mind, we’ll just say you’re not a match.”
After that four-month process, when we found out I could be a donor, we were so happy. But George really wanted to continue working and wait until the end of the season, [even though] he was very sick. He was afraid that they would cancel the show if he didn’t finish out the season, and he has people that rely on him working on the show. It was really a struggle, but [we were able to wait until] April.
Explaining things to my daughter was one of the hardest parts of it all. We took a vacation to Hawaii two weeks before the operation, for her spring break. She was having so much fun, and we knew when we got back we would have to tell her. She was nine at the time; now she’s ten. On the Sunday before the surgery, we told her very simply: “I’m going to give daddy one of my kidneys, we’re going to go into the hospital and have an operation.”
She was OK at first, but then she started asking me more detailed questions. I had made a little stick-figure book: it was very childlike and funny. I had her paint daddy’s kidneys black and mine pink; I had the doctor throwing kidneys to each other; there was some gas-related humor. [In the end], she took it really well. You have to tell them the truth, a truth that they can believe, but not too much detail.
I wasn’t frightened at all. Both my parents are physicians, so I grew up around hospitals – and the things I used to hear around the dinner table would curl anybody’s toes! But this was the easiest operation I ever had. Having a baby was harder than this. I had food poisoning, and that was harder.
[Surgeons] go in with instruments and take kidney out from a little incision above belly button, so I only have a small scar above my belly button, and three scars on my side. The worst part of it was the gas pain, but after three days it was pretty manageable. I was just tired. It took me about a month before I was driving and doing errands again, and even then I was tired. But it was actually a really good vacation! It made me read books, lay down. I felt absolutely normal about three months later. I don’t feel like I only have one kidney – I work out, I hike, I go horseback riding.
Other than giving birth to my daughter, I can’t even begin to tell you what it feels like to be able to save the life of someone. My husband is alive; he’s healthy for the first time in his life. To change somebody’s life in such a dramatic way is so amazing. It’s such a small sacrifice. I have so many people that are afraid of the pain, but I tell them, ‘You’re giving someone a life!’
People say I did a selfless thing, but I think I did a selfish thing, because I love my husband. The real heroes are people who give their kidneys to people they don’t even know. I’ve met people who have given kidneys to complete strangers, and that to me is so beautiful.

Paul Anthony Lopez (center) was killed by a drunk driver in 1998; his parents, Celina and Jose, chose to donate his organs.	Karen Garcia with publicity material from the Coalition on Donation	Marissa (left) and Anissa Ayala

In July 1998, seventeen-year-old Paul Anthony Lopez was struck by a drunk driver and declared brain-dead. His mother and father, Celina and Jose, chose to donate his organs. Says Karen Garcia of the Life Alliance Organ Recovery Agency, “In general, there’s a fear among Hispanics of discussing death. When you talk about organ donation, you’re talking about after you die.” To address these cultural barriers, Garcia helped launch a Spanish-language campaign at the Coalition on Donation (www.donatelife.net; www.donevida.org). Now, she says, “there’s more awareness and acceptance of donation.” Julia Rivera, communications director at the New York Organ Donor Network (www.donatelifeny.org), also emphasizes the need for communication – and for potential donors. “You need to talk to your family and let them know what your wishes are. Of all the people who die, only a small percentage are potential donors – one to 1.5 percent.” Here is Celina Lopez’s story:

In 1998, I was supervisor in a post office in Long Island, and there was a person there waiting for a heart [transplant]. I was there when he got the call that he was to get the heart that day, and I sat with him and I saw how emotional this was. When he received his heart, it was thirteen days before my son’s accident.
Five different people got Paul’s organs. One got his heart and lungs, another got one of his kidneys, another person got another kidney, one got his pancreas, and one his liver. But at that moment, I never thought of the people that were sick. I only thought about my son, how he was such a giving and good young man, who loved life. How could I let that life end?
[At the time] it was more of a selfish decision to continue my son’s life. And then afterwards, I started getting involved with the New York Organ Donor Network just to keep myself out of therapy. It was easier to speak to other people like me, to talk about it and share my story. Again, it was a selfish thing, because I could talk about Paul. Sometimes [after someone has been deceased for a while] people don’t want to hear about it anymore.
The U.S. Post Office has allowed me to put tables in different branches during organ donor month, and talk to people about the importance of organ donation. In the Latino community, when I speak to them, [there are a lot of myths]. They’re always afraid they won’t receive donations because they’re Hispanic, and there’s also the religion. But it’s just a matter of education, because people don’t realize that even the Pope has said it’s one of the greatest gifts you can give. People also think that they can’t have a traditional burial and viewing, but you can have an open casket, and nobody will be able to tell.
Sometimes people think that they’re going to let you die to take your organs. I can tell you from experience that when Paul was in a ventilator and brain-dead, everybody treated my son with such respect that it was admirable to see. He wasn’t just another [patient], he was a human being. All those things made my son’s death not so tragic, it made it a little more positive. There are people alive because of him! The attention and the compassion that I got made the whole ordeal a little easier.
A lot of people have a problem talking about death, especially Hispanics. But it is important that you do talk about it. You have to educate yourself on it in order to make a decision, because you have to be comfortable with making that decision at the lowest point of your life.
When I said I would like to donate Paul’s organs, my husband was devastated. This was his only son, his baby, his pride and joy. You have children and you love all of them – but a son is a son, and losing him was a big deal. But as he saw the care that Paul had, [he came to accept the idea of organ donation].
Right now he has met a lot of recipients and he has seen the importance of it. Peter Gonzalez [the recipient of Paul’s liver] is another member of our family now. My husband has seen how Peter has been able to enjoy his family, and now they speak together publicly about organ donation. Without Paul’s donation, Peter wouldn’t have been here.
My son loved life – he was the happiest kid you could ever meet. Anyone that met Paul never forgot him; he was just special. I always thought it was just because I was his mom, but people told me [after he died] that he was special. He had four scholarships to New York University, and he was a dancer with the NYU Hispanic traveling theater. He just loved his culture.
For a person that young, he touched so many people – there were over two thousand people at his funeral. I used to say to myself, “Where did he meet all those people?” By donation, I let his life continue.

In 1995, Rich Ramirez was diagnosed with a rare liver disease called Primary Sclerosing Colangitis (PSE). He waited on the transplant list for a year, and received a liver transplant in 1997. Today, he works as a comedian and actor in New York, performing a one-man show called “You Want a Piece of Me?” Here is his story:

[I found out I was sick] when veins in my esophagus ruptured and I lost five pints of blood through internal bleeding. I spent forty days waiting in the hospital for a transplant. They wouldn’t let me go – I was that sick.
All I know about my donor is that she was a 55-year-old woman from Long Island. I don’t know how she died. I wanted to thank her family for the decision that they made – it couldn’t have been easy. So I wrote to tell them that I was so thankful and blessed, and [I told them] about my performing and my being able to tell people about donation that way.
Two months after getting surgery, I was back up on stage. I wound up writing jokes based on my transfer. A good eighty percent of the time, somebody from the audience will come up to me after the show, and either they know someone who had one, or who is on a list waiting, or who was a donor. And they share their experience with me.
I think God has a plan for me. When I got sick, He said, “Wait a minute, we’ve got one here who can be a spokesperson for organ donation!” I was hired to be a public speaker for organ donation awareness, and I average six speaking engagements per year as a transplant recipient. When I have a professional medical audience, they really enjoy my story, because often they’ve never really experienced speaking to someone that has gone through a transplant. It’s always a wonderful experience.
It’s going to be nine years for me [since my transplant]. So there’s hope. Since I went through a liver transplant, my family, friends, and peers have become more aware of organ donation and organ transplantation. I do what I can – if I didn’t work as much as I did, I’d be volunteering all the time.
In 1988, sixteen-year-old Anissa Ayala was diagnosed with chronic myelogenous leukemia and told that she would need a bone marrow transplant to survive. Unable to find a match, her parents conceived another child in the hope that the new baby could serve as a donor. The family’s decision created a national controversy, but in June of 1991, Anissa successfully received a transplant from her fourteen-month-old baby sister, Marissa Eve. Today, Marissa is a high school junior and Anissa is the assistant director of recruitment for the Southern California Donor Center of the National Marrow Donor Program (www.marrow.org). Here are Anissa’s thoughts:
Leukemia is cancer of the blood, so you can’t go in and just cut out a part of the body and hope that you’ve removed the cancer. You need bone marrow transplantation. I explain it like it’s an oil change. I went through four days of total body radiation, three times a day, for seven to eight minutes each time. That killed everything – it didn’t matter what kind of cell.
Then they gave me one huge dose of chemotherapy. What you’re hoping is they’ve fought your immune system down to almost nothing, so that when the marrow is transfused into you just like a blood transfusion, it will go in and take over the old marrow and start regenerating the old immune system. But the match has to be very close, or your body could reject it, which could kill you.
The process is really difficult on the [recipient’s] end, and you really have to be mentally and physically prepared for it, because you do endure a lot. But I looked at it as my last battle, and whether I won or lost, at least I got the chance to fight.
During marrow donation, donors go under general anesthetic; then, the marrow is removed [with a special syringe] from the back of the pelvic bone. There is some pain and soreness, which can last from two days to three weeks. But my sister did marrow collection at fourteen months old, and I think, “If she could do it, anyone can do it.”
I work with the National Marrow Donor Program because I believe in it, and I wouldn’t be here without it. My mom continues to be involved in community service. Recently, my sister got her friends together to start a community service organization of their own.
Women are so much more willing to lend a hand, to reach out and help. My mother is my idol – she is such a strong woman and she had to make huge decisions and be criticized. It’s really important for us as women to understand and to educate ourselves, so that if something like this happens to our family we won’t be in the dark. Even if our lives are very hectic, there’s still time for everyone to reach out and make a difference.