Heart Transplants, Organ Donations Give Dye Family a Unique Perspective

Living in the Greater Brandon neighborhood of Valrico, Tom and Judy Dye of Florida know full well the true meaning of the "gift of life." On Sept. 8, 2007, their daughter, Stephanie, 22, underwent a heart transplantation at Tampa General Hospital. It was the same hospital that Tom Dye received a heart transplantation of his own, in December 2004. Indeed, it was on the first-year anniversary of his new heart that he learned Stephanie suffered from the same disease, cardiomyopathy, which doctors at first attempted to control with medications. Now, the Dyes are believed to be the only father-daughter heart transplantation recipients in the nation. They speak frequently about their experiences before large gatherings and always to encourage others to give the gift of life by signing up to become an organ and tissue donor. In the interview below, Tom and Judy Dye talk about their feelings as spouses and parents in this very unique situation, starting with a discussion of how and what Tom and Stephanie learned about their donors. (The attached videos are from the spring 2011 gathering at Brandon Regional Hospital, where officials announced the hospital's partnership with LifeLink, as a donor hospital.)

BRANDON PATCH: It took awhile for you to hear back from your donor family, after you reached out to them to make contact . . .

• TOM DYE: The first note I got from the mother of the donor was in a damaged envelope. The funny part about it is, if you get damaged mail, it comes in another envelope. So even the mail had a transplant. I said to Judy, “This is appropriate!”

BRANDON PATCH: The letter said . . .

• TOM DYE: It was a handwritten note that said, “Hello,” and that she had another son and that she was happy I tried to contact her and that she was happy to get to know me. And she signed it, “Love, Mom.”

BRANDON PATCH: Your daughter, Stephanie, was about to learn the identity of her donor, but you took control of that for a short time.

• JUDY DYE: We wanted to prepare her for the fact her donor was so young. The donor was a male and he was “youngish,” that’s what they said, and we figured probably someone in their early 20’s. We had no idea it was a kid, a 12-year-old boy. The letter we got, and the picture we got, [through LifeLink, forwarded to the Dyes’ coordinator at Tampa General Hospital] came from family friends. They were writing on behalf of the parents. At the time, the parents were not a point to have any correspondence but they wanted to tell us about Riley.

BRANDON PATCH: What did you learn about Riley?

• JUDY DYE: He never met a stranger. Just a good, kind, loving kid.

BRANDON PATCH: What were your thoughts, as a mother?

• JUDY DYE: It was heartbreaking. As a mom, it’s really easy to put yourself in that mindset. I can barely imagine what it was like for them to have lost a son.

BRANDON PATCH: You were heartbroken, yet grateful . . .

• JUDY DYE: It’s always been a dual-edged sword for me, as my husband and daughter are thriving  there are two families out there on the opposite side of that. The loss of any life is awful but the loss of a young life is even harder. I’m incredibly grateful that they had the strength to do what they did so we could have Stephanie.

BRANDON PATCH: What were you thinking, Tom, when you got this letter, from the mother of the son whose heart gave you a second chance at life?

• TOM DYE: I was just glad to get it. I thought maybe the family didn’t want to communicate with anybody or that it would be a bad mix, that maybe it wasn’t getting forwarded.

BRANDON PATCH: And then the letter came, handwritten on a piece of paper from a spiral-bound notepad . . .

• TOM DYE: I was thinking, wow, she finally responded. I responded back, a general letter, to say thank you very much and what it has meant to our family and to let her know I would be interested in getting back with her. She called, we weren’t here, and she left a message on the answering machine, “Barbara, from Alabama.” 

BRANDON PATCH: What did she eventually tell you?

• TOM DYE: Her son, Carl, 42, died of complications from high blood pressure, probably had a massive stroke. He was put on life support long enough. He had a brother and he had son from his first wife.

BRANDON PATCH: The wife, though, has chosen not to communicate, so it’s a personal choice that rests on deeply felt emotions.

• TOM DYE: We’ve gone to a lot of donor events, and we’ve learned that for the people who do want to communicate, it means a lot to them to find out who the recipient is, to see who is the person living on through someone else. It gives them some peace of mind, that it wasn’t just the end. That something good came out of something that was very sad.

BRANDON PATCH: It’s been six years since you got your new heart . . .

• TOM DYE: As time goes on your life goes back to being more normal, which is the way it should be. I’m always grateful. It’s not like something you’re not reminded of, because every day you take a shower and you see the scars. Every day I’m thankful. The medicines, I constantly have to think to make sure I’ve taken them. It’s so ingrained. In the entire six years plus I’ve missed only two doses. 

BRANDON PATCH: That’s the point, though, you said, to return to a life of normalcy. And yet . . .

• TOM DYE: The whole point of it, of this miracle, is for your life to go back to normal, so most of the time I try to maintain a normal mental status. But there are times you have to remind yourself that this is such an amazing event, that this is such an amazing family, that you are alive, that your daughter is alive, because of somebody else’s gift of life.

BRANDON PATCH: Judy, as a wife and as a mother on the verge of losing both your husband and then your daughter, do you ever stop worrying?

• JUDY DYE: It will never stop. When I think of the last six years, I think of the tremendous amount of support we’ve had, how incredibly blessed we have been by just having everything falling into place at the exact time that it needed to and the exact way it needed to. I look at the fact that Tom and Stephanie are truly two of the most resilient people I’ve ever known. They will forever be my personal heroes.

BRANDON PATCH: What’s the one thing above all others that you’d like people to know about how these transplants have changed your world view.

• JUDY DYE: I guess more than anything I would tell people that I think everybody looks at the miracle of life as birth. And now we look at the miracle of life as not only the birth of a baby but also as a lifesaving transplant. Because to me, Tom and Stephanie were so sick before their transplants and I’ve seen how miraculously transforming it was from “very sick” to “healthy and whole.” To us, that’s the miracle.

BRANDON PATCH: Did you ever question why you got the disease?

• TOM DYE: People would ask me, “Why did you need a heart transplant?” I never really ask that question because there’s no answer to that. It’s part of the plan of your life, you got picked, oh well. Then, when Stephanie got sick and was diagnosed [with cardiomyopathy], then I knew, “Why me.” If it happened in the reverse order, her first and then me, I would have been terrified.

BRANDON PATCH: You said there’s a flip side to that . . .

• TOM DYE: The flip side of that, which didn’t come around too often, was I was very unhappy with our creator. After she was sick, and waiting for the heart to come in, as she was deteriorating, it was kind of like, “Wasn’t one enough? Now, the daughter? One’s not enough, you need two?” I think maybe twice I fell into the woe-is-me mode. Most of the time I avoided it. It was not constructive. I stopped feeling sorry for myself and looked forward.

• JUDY DYE: When you get into a situation like this you really have two choices. You get up and you face the day and deal with what’s been given to you. Or you mope and cry, and the outcome typically is going to be the same. So, it’s how you approach it and deal with it. The greatest gift we were given was our ability to deal with this with a sense of humor.

BRANDON PATCH: Your family has a history of heart disease.

• TOM DYE: Every male on my father’s side has had a heart ailment. My father, he was on the transplant list for awhile, died [from cardiomyopathy], his father, my sister Patti, on my first heart-a-versary, while we were having the party, I learned she died, too. And my youngest sister died 11 years ago.

BRANDON PATCH: And then you discovered your daughter had the disease as well, but not your son, Daniel.

• JUDY DYE: I don’t think we ever connected the dots. We never considered it could be our kids next, or this soon. Tom was 50, Patty was 56. Jill, the youngest [sibling] was in her 30’s, but she had other health issues, too. It never dawned on us it would strike one of our kids, and at such a young age. Stephanie was diagnosed in 2005. Shortly after Tom’s transplant he wanted us to have both Stephanie and Daniel tested so they could have a baseline to judge against as they got older.

BRANDON PATCH: That’s how you found out Stephanie, too, had the heart disease.

• JUDY DYE: I think we were just numb. We were just in shock. This can’t possibly be happening again. We just did this a year ago! We really can’t be doing this again. They were able to manage her [condition] with medication for two years.

BRANDON PATCH: And then they couldn’t, so you became one family with two heart transplants in the space of three years, and still people don’t seem to quite grasp the enormity of that.

• JUDY DYE: Any time you say “heart transplant” people assume that means you had a heart attack and they fixed it. Or, you had bypass surgery or you had stints put in. No, Tom had a whole new heart put in. Stephanie had a whole new heart put it. And that’s hard for people to fathom.

BRANDON PATCH: Judy, if you were interviewed by Oprah, or could reach a larger audience, what would you want to say?

• JUDY DYE: I would want people to know how important it is for people to sign up to become organ and tissue donors. That’s something that takes as little time as checking a box on your driver’s license. Most states have online registry. If those two families had not made that choice I would not have my husband and my daughter. Stephanie always puts it the absolute best way when she says it is the last true act of kindness and generosity a person can perform on this earth, being an organ and tissue donor.

BRANDON PATCH: It’s hard to be the patient, with your life on the line. Hard, though, too, for the parents of a child fighting for her life.

• TOM DYE: It’s easier for the patient because you have to give yourself up to the medical community and trust them. You put yourself in someone else’s hands and see what happens. You’re giving up all control and doing it willingly, where the parents of the family member have no control and want to have control.

• JUDY DYE: All we can do is stand by. On this side of the bed you’re standing by and watching everything that happens. For Tommy, a lot of times he wasn’t aware of what was going on. With Stephanie, the hard thing was we knew what was coming next. When they were doing procedures, Tom knew what the pain threshold would be. If I could have taken either of their places I would have done it, literally, in a heartbeat. To watch the people you love the most hurt so badly is unfathomable. I look at people all the time who have loved ones with cancer and lifelong illnesses, it’s such an overwhelming and all-consuming event.

BRANDON PATCH: You’ve become the people others can turn to, to help them get by in a similar situation. What do you tell them, and especially about the anger that sooner or later seeps in with the diagnosis?

• JUDY DYE: You look at Tom and everybody sees him as somebody’s dad or somebody’s brother. You look at Stephanie and see somebody’s daughter or granddaughter or niece. They ask me to come to talk to families because, again, I’ve been in a very unique situation. We talked to a dad, whose son needed a heart. The son was very angry and uncooperative and at 18 his life was going to completely change. We talked to the dad and one of his questions to me, very personal, was, “Right now I am so angry at God I can barely stand it. How did you do it?” God never told us it would be easy but he always told us he’d be there for us. You don’t get a postcard at the beginning of your life that says, “Hi, this is God, these are the trials I’d like to give you over the how many years you’ll have. Please check the boxes of the ones you’re not interested in.” It doesn’t work that way. We are given a life and everybody is dealt a different hand and it’s really how you deal with that hand that matters. Good, bad or indifferent, it’s your job to live the life you’ve been given no matter what the circumstances are.

RELATED COVERAGE:

• Dye Family Speaks About Organ and Tissue Donation at Brandon Regional Hospital 
• A Fifth 'Heart-Aversary' for the Dye Family: 'Gift of Life' in 2004; Daughter's Transplant Three Years Later
• One Family, Two Heart Transplants: The Dyes Celebrate Daughter's First 'Heart-Aversary' (Dad Celebrates His 'Heartday' In December)
• The Dye Family of Valrico Celebrates Two Heart Transplants In Three Years (And Three Months)