Source: The OregonianTo feel Nakia Hentz' broken heart, take hold of her left wrist.
The Portland teen's right arm looks like many 17-year-olds', with black-lacquered nails and a string bracelet. The two bracelets on her slender left wrist are plastic ID bands from hospitals. Press your fingertips to the arteries running below the bands. You feel warmth, but no motion: She has no pulse. She has no heartbeat.
A mechanical pump that revs as fast as an Indy Car pushes blood through Nakia's body. It nestles below a scarred and swollen heart that has grown too weak to supply her body with oxygen. Wires run through a tube in her abdomen to batteries Nakia carries in a black shoulder bag.
The system is keeping Nakia alive until she can have a heart transplant. That doesn't mean she likes it. With a wire through her side, Hentz can't swim, can't touch a TV screen, can't sleep on her stomach, or bend over, or jump. And she can't yet manage to feel comfortable in her body.
"Thinking about when I'm older, when I'm wearing a bathing suit, wearing a nice dress, people are going to look at these scars," Nakia says, her eyes filling with tears. "They're not going to look at me."
Her mother, Lei Hentz, tries to reassure her. "We'll be able to get past the scars," she says. "It's just, right now, it's so raw."
Nakia started her junior year at Franklin High with a 3.8 GPA and plans to act in "Oklahoma!" But she found herself falling asleep in class, and struggling through PE. When she had to run three miles in gym class, she started coughing up blood. From time to time, she felt sharp pains, like a cramp behind her breast. She wondered if they stemmed from the asthma doctors diagnosed in infancy.
After winter break, her health slid downhill. The whole family had the flu over the holidays, said her father, Kim Hentz. "We all got better," he says. "She didn't."
Doctors blamed asthma, then bronchitis, then pneumonia. But no treatment worked. On March 8, Nakia saw a new nurse practitioner, who ordered a chest X-ray. The picture was frightening: Hentz' heart was three times the proper size. An ambulance whisked her to the hospital.
"I thought the worst thing that was going to happen was I'd have to ride in the ambulance," Nakia says. By that night, she was doubled over in a Legacy Emanuel bed with severe nausea and the worst headache of her life.
"They hadn't given me any medication. It couldn't be a reaction to anything," she says. "It was just me. I was failing." She has no memory of the next 2 1/2 days. No one knows what started destroying Nakia's heart. The best guess is that a virus attacked her heart some time in the past few years. But what's happening now is painfully clear.
Hentz is one of at least 500,000 U.S. residents who will develop heart failurethis year. That term defines a dangerous cycle many hearts enter after injuries ranging from heart attacks to birth defects, says Dr. Tony Kim, one of Nakia's cardiologists at Oregon Health & Science University. The initial wound leaves the heart struggling to squeeze enough blood throughout the body. The organ compensates by growing larger and thicker, but that growth further weakens it. Eventually, something else must take over for the dying heart -- a donor heart or a mechanical pump, called a ventricular assist device, or VAD.
Most heart failure patients are adults. A 40-year-old U.S. resident has a one in five chance of developing heart failure, and the risks rise with age. At 17, Nakia is the youngest person in Oregon to have a VAD placed in her chest, and one of the youngest nationwide, Kim says.
Nakia fought distinction. Emanuel doctors hoped pills could boost her heart's strength, sending her home in late March with a bevy of medicine. But she ached and couldn't sleep well, heading to OHSU nine days later with legs chilly from a lack of blood flow.
If Hentz needed surgery, she wanted a transplant. Her heart had different ideas. "She was very sick, and needed something very quickly," Kim says. A pump, doctors decide, would have to hold the girl over until they could arrange a transplant. Hentz fought the idea for days, snapping at family and nurses and shouting, "I hate you!" at one of her cardiologists, Dr. Eric Adler. Her father asked a VAD recipient in his 30s, who was thrilled with his new energy, to tell Nakia about his experience. She thought the man was "an idiot." "I just broke down," Nakia says. "I wasn't scared of a transplant. I wasn't scared of a pacemaker. But having a tube come out of me, at 17? That's scary."
By April 8, Nakia had grown so sick doctors worried she wouldn't live through the night. They rushed her to surgery, installing the pump in a 5 1/2-hour operation.
She came off her respirator two days later, on her father's birthday. "She said, 'Dad, I'm sorry I ruined your birthday,'" her mother recalls. "Are you kidding? It's the best birthday ever." Recovery is hard work, physically and emotionally. Nakia spent eight days in intensive care, enduring pain and hours-long nosebleeds. She was hooked to so many tubes and bags that five people had to help her take her first walk after surgery.
Nakia left OHSU in late April with her pump, two separate power supplies and a users' manual so complex her parents had to pass a test to take her home. Kim Hentz took leave from work to manage Nakia's complex care, including 16 medicines she needs each day. Nakia must keep a strict diet, with less than a teaspoon of salt daily and few leafy greens, which can thicken the blood.
"It's life-changing, completely, 100 percent, from food to what she wears -- literally everything," Kim Hentz says.
Heart failure patients rarely get well enough to return to work. But her doctor says Nakia is doing well. Nakia hopes to return to school this year, at least part-time, and to graduate with her class next year. She also hopes to get on a waiting list for a new heart this summer.
"I'm excited for the transplant," she says. "If I can get this out of me and get a new heart and not always have chest pains or palpitations, that would be great." For now, Nakia bounces between optimism and doubt as she tries to make peace with the pump saving her life.
"I do feel better. But I don't like it," she says. "I'm a kid, I don't like it and I'm not going to."
Nakia's parents say she's less depressed, more insightful about life. She's finding her real friends: An old boyfriend hasn't spoken to her since she got sick, while once-casual friends planned fundraisers and her best friend helps Nakia shave her legs. Sometimes, she texts another friend, Adler, the doctor she screamed at in the hospital. She plans to walk with him in next Saturday's Greater Portland Start! Heart Walk, even if she needs a wheelchair.
At least twice in the past few months, Lei and Kim Hentz say, they thought their daughter would die. "I still think about that, every day," Kim says.
Lei says, "I still worry if they're going to get her another heart before ..." she doesn't finish the sentence. "What's hard is, I think, 'Someone else has to die so she can live. It's hard that I think that, I wish that."
The Portland teen's right arm looks like many 17-year-olds', with black-lacquered nails and a string bracelet. The two bracelets on her slender left wrist are plastic ID bands from hospitals. Press your fingertips to the arteries running below the bands. You feel warmth, but no motion: She has no pulse. She has no heartbeat.
A mechanical pump that revs as fast as an Indy Car pushes blood through Nakia's body. It nestles below a scarred and swollen heart that has grown too weak to supply her body with oxygen. Wires run through a tube in her abdomen to batteries Nakia carries in a black shoulder bag.
The system is keeping Nakia alive until she can have a heart transplant. That doesn't mean she likes it. With a wire through her side, Hentz can't swim, can't touch a TV screen, can't sleep on her stomach, or bend over, or jump. And she can't yet manage to feel comfortable in her body.
"Thinking about when I'm older, when I'm wearing a bathing suit, wearing a nice dress, people are going to look at these scars," Nakia says, her eyes filling with tears. "They're not going to look at me."
Her mother, Lei Hentz, tries to reassure her. "We'll be able to get past the scars," she says. "It's just, right now, it's so raw."
Nakia started her junior year at Franklin High with a 3.8 GPA and plans to act in "Oklahoma!" But she found herself falling asleep in class, and struggling through PE. When she had to run three miles in gym class, she started coughing up blood. From time to time, she felt sharp pains, like a cramp behind her breast. She wondered if they stemmed from the asthma doctors diagnosed in infancy.
After winter break, her health slid downhill. The whole family had the flu over the holidays, said her father, Kim Hentz. "We all got better," he says. "She didn't."
Doctors blamed asthma, then bronchitis, then pneumonia. But no treatment worked. On March 8, Nakia saw a new nurse practitioner, who ordered a chest X-ray. The picture was frightening: Hentz' heart was three times the proper size. An ambulance whisked her to the hospital.
"I thought the worst thing that was going to happen was I'd have to ride in the ambulance," Nakia says. By that night, she was doubled over in a Legacy Emanuel bed with severe nausea and the worst headache of her life.
"They hadn't given me any medication. It couldn't be a reaction to anything," she says. "It was just me. I was failing." She has no memory of the next 2 1/2 days. No one knows what started destroying Nakia's heart. The best guess is that a virus attacked her heart some time in the past few years. But what's happening now is painfully clear.
Hentz is one of at least 500,000 U.S. residents who will develop heart failurethis year. That term defines a dangerous cycle many hearts enter after injuries ranging from heart attacks to birth defects, says Dr. Tony Kim, one of Nakia's cardiologists at Oregon Health & Science University. The initial wound leaves the heart struggling to squeeze enough blood throughout the body. The organ compensates by growing larger and thicker, but that growth further weakens it. Eventually, something else must take over for the dying heart -- a donor heart or a mechanical pump, called a ventricular assist device, or VAD.
Most heart failure patients are adults. A 40-year-old U.S. resident has a one in five chance of developing heart failure, and the risks rise with age. At 17, Nakia is the youngest person in Oregon to have a VAD placed in her chest, and one of the youngest nationwide, Kim says.
Nakia fought distinction. Emanuel doctors hoped pills could boost her heart's strength, sending her home in late March with a bevy of medicine. But she ached and couldn't sleep well, heading to OHSU nine days later with legs chilly from a lack of blood flow.
If Hentz needed surgery, she wanted a transplant. Her heart had different ideas. "She was very sick, and needed something very quickly," Kim says. A pump, doctors decide, would have to hold the girl over until they could arrange a transplant. Hentz fought the idea for days, snapping at family and nurses and shouting, "I hate you!" at one of her cardiologists, Dr. Eric Adler. Her father asked a VAD recipient in his 30s, who was thrilled with his new energy, to tell Nakia about his experience. She thought the man was "an idiot." "I just broke down," Nakia says. "I wasn't scared of a transplant. I wasn't scared of a pacemaker. But having a tube come out of me, at 17? That's scary."
By April 8, Nakia had grown so sick doctors worried she wouldn't live through the night. They rushed her to surgery, installing the pump in a 5 1/2-hour operation.
She came off her respirator two days later, on her father's birthday. "She said, 'Dad, I'm sorry I ruined your birthday,'" her mother recalls. "Are you kidding? It's the best birthday ever." Recovery is hard work, physically and emotionally. Nakia spent eight days in intensive care, enduring pain and hours-long nosebleeds. She was hooked to so many tubes and bags that five people had to help her take her first walk after surgery.
Nakia left OHSU in late April with her pump, two separate power supplies and a users' manual so complex her parents had to pass a test to take her home. Kim Hentz took leave from work to manage Nakia's complex care, including 16 medicines she needs each day. Nakia must keep a strict diet, with less than a teaspoon of salt daily and few leafy greens, which can thicken the blood.
"It's life-changing, completely, 100 percent, from food to what she wears -- literally everything," Kim Hentz says.
Heart failure patients rarely get well enough to return to work. But her doctor says Nakia is doing well. Nakia hopes to return to school this year, at least part-time, and to graduate with her class next year. She also hopes to get on a waiting list for a new heart this summer.
"I'm excited for the transplant," she says. "If I can get this out of me and get a new heart and not always have chest pains or palpitations, that would be great." For now, Nakia bounces between optimism and doubt as she tries to make peace with the pump saving her life.
"I do feel better. But I don't like it," she says. "I'm a kid, I don't like it and I'm not going to."
Nakia's parents say she's less depressed, more insightful about life. She's finding her real friends: An old boyfriend hasn't spoken to her since she got sick, while once-casual friends planned fundraisers and her best friend helps Nakia shave her legs. Sometimes, she texts another friend, Adler, the doctor she screamed at in the hospital. She plans to walk with him in next Saturday's Greater Portland Start! Heart Walk, even if she needs a wheelchair.
At least twice in the past few months, Lei and Kim Hentz say, they thought their daughter would die. "I still think about that, every day," Kim says.
Lei says, "I still worry if they're going to get her another heart before ..." she doesn't finish the sentence. "What's hard is, I think, 'Someone else has to die so she can live. It's hard that I think that, I wish that."
0 COMMENTS:
Post a Comment