Mechanical Heart Rescue Could Lead to Healing - and Freedom
Donna Jackson was not a spry youngster when she began to notice she tired more easily. But she could still carry her own groceries in from her car and she loved her daily water aerobics class. Her doctors told her they thought it was bronchitis, then pneumonia and, then, allergies that were slowing her down. She was 67, after all, and she had spent many years nursing her husband before his death.
Jackson knew something was going on with her health. Her medical treatments weren't having any impact and her breathlessness continued to worsen until one day she couldn't make it from her car to her front door without stopping to rest. “I got so tired I wanted to sleep all the time," she said.
Then, in July 2010, she went to the doctor again. This time, she was given an echocardiogram, a test that tracks measures the heart's activity. The result was alarming – her heart was working so feebly that with each beat it was pumping only 12 percent of the blood in her heart, only one-fifth of the oxygenation her body needed. Within days, Jackson was at Stanford Hospital & Clinics. Her new physician was cardiologist Dipanjan Banerjee, MD. His diagnosis was unexpected and drastically life-altering: Jackson had congestive heart failure. But he couldn't tell her why. Sometimes heart failure has no obvious cause. Jackson's heart valves were working, her arteries were clear, her cholesterol was normal, and so was her blood pressure.
Yet the left ventricle of her heart, the muscular chamber that constitutes half of the pumping needed to keep blood flowing around the body, was failing, rapidly. The standard treatments, those that address problems like clogged arteries and faulty valves, would be pointless. What Jackson needed to survive was a heart transplant. It didn't make her feel better that Banerjee told her he'd never had a transplant candidate as healthy as she was.
If I had a transplant, then I'd have to take immunosuppressants that would mean I wouldn't have been able to be with my great-grandchildren if they were sick.
First, however, she had to agree to a transplant, and for days her answer was no.
"I had a really hard time," she said. "I didn't want to put my kids through the thing of me having a transplant. Somebody would have to take care of me. And I'm thinking that I'd rather leave a heart available for someone younger who has a life ahead of them. And if I had a transplant, then I'd have to take immunosuppressants that would mean I wouldn't have been able to be with my great-grandchildren if they were sick. I just didn't want to go through all that."
A different option
Heart disease includes a long list of conditions. Heart failure, which specifically covers the heart's ability to pump blood, has become more and more common. A National Heart Discharge Survey showed that hospital admissions involving heart failure rose from more than 1 million in 1979 to 4 million in 2004. In addition, fewer hearts are available for transplant. The number has not risen since 1999, and the gap between available organs and people waiting is increasing. Last year, 3,000 patients were on the list and 2,000 heart transplants were completed.
But Jackson had another option, an existing device approved for a new function by the FDA a couple of months earlier. And Stanford had earned a special advanced designation from the Joint Commission, the accrediting body for American healthcare facilities, as a hospital with a high level of excellence in working with that device, the left ventricular assist device, commonly called the LVAD.
It's a small mechanical pump that takes over what the ventricle can no longer do. For the last decade, physicians have used it as a bridge "when patients need it now," Banerjee said, for people on the transplant list, helping to keep them alive for the days, weeks or months until a heart became available.
Jackson was a good candidate for an LVAD because she was sick enough to need it to survive, but not so sick that she wouldn't survive surgery.
The LVAD is part of the family of mechanical devices built to sustain the heart, either as a temporary support during surgery or as a complete substitute for its function. The first cardiopulmonary by-pass machine emerged in 1954. In 1982, a Seattle dentist named Barney Clark, who suffered from congestive heart failure, lived 112 days after surgeons implanted an artificial heart in his chest. The device was intended to be permanent, but the 400-pound air compressor that powered it was clearly an obstacle to anything approaching a normal life.
Almost three decades later, the current LVADs run on10-hour batteries that weigh a pound each and a 2-pound controller- not light, but certainly portable. The LVAD also stores a record of its activity that can be downloaded for review.
The heart is almost all muscle. With each of its expansions and contractions, it sends blood out into the body to enable its every action. When that muscle weakens, the body begins to fail, too.
Who is at risk?
- Heart failure can be caused by many conditions, including valvular disease, high blood pressure, narrowed coronary arteries, irregular heartbeat, infection and diabetes.
- Age: At age 65, heart failure is the most common reason for hospital admission.
What are the symptoms?
- Shortness of breath
- Visible swelling of the legs, ankles, feet and, sometimes, abdomen
- Fatigue and weakness
- Loss of appetite and nausea
- Persistent coughing or wheezing accompanied by phlegm
- Decreased alertness
How is it treated?
- Surgery, including valve repair, ventricular restoration, coronary artery bypass, myotomy and transplant
- Medical devices such as a defibrillator, pacemaker or ventricular assist like the LVAD
Who is a candidate for LVAD?
Someone whose heart has deteriorated beyond the best medical management, but whose overall health is strong enough to withstand surgery
How to keep your heart healthy
- Eat a low-fat, low-sodium diet
- Maintain a healthy weight
- Quit smoking
- Exercise regularly
- Limit alcohol consumption
Only recently, however, has the technology and reliability of the device improved enough for the FDA to approve it to be implanted not only for a short time, but for years, as a long-term alternative to transplant. Its value rises with each year, Banerjee said. "We can see the writing on the wall – the number of hearts available each year has not risen since 1999 and the number of people needing a heart is rising every year. The gap between them is getting larger," he said. "We are blessed to have the LVAD, and in some cases, it's better than a transplant."
Life after a transplant comes with a long list of must-do's. At the top of the list are the immunosuppressants Jackson knew about, medications needed to keep the body from rejecting the transplanted organ.
Life after an LVAD has its downsides, too. Its primary battery and back-up batteries must be worn at all times, carried in a specially-modified harness or vest. A controller goes around the waist. It can't handle exposure to moisture, for obvious reasons. It does put certain limits on physical activity. And because it's a mechanical machine that's driving a delicate human organ, its settings must be adjusted to just the right force and speed.
Jackson considered. "Everyone kept telling me, 'Mom, it's your life, whatever you want to do.' They left it up to me," she said.
"We were just grasping at straws for anything to keep her alive," said her daughter-in-law, Cheryl. "But it had to be her decision." But waiting and watching was hard, said Fred Jackson, one of her two sons and Cheryl's husband. "She was going downhill so quick."
One night, Jackson said, "I was lying in bed, kind of crying and I said, 'God, I can't take this anymore, whatever you think I should do, I'll leave it up to you.'"
She had also had a conversation with her 6-year-old great-granddaughter, Peyton. The little girl reminded Jackson that in that last couple of years, she'd lost two grandparents and a great-aunt "and she wanted me to be around," Jackson said.
A new life
That was enough to persuade Jackson to okay the LVAD. Her care was directed and supported by a large, multidisciplinary team of professionals. It was not an easy surgery; her recovery took weeks. But her family was with her, helping so much that the Stanford nurses joked that Jackson's daughter-in-law, Cheryl, should be given an honorary nurse's license. Peyton and her brother, 8-year-old Mason, have become her unofficial guardians, reminding her about her diet, especially not indulging in salty foods. Peyton is even more connected to Jackson. She's learned how to help her great-grandmother test the batteries and the monitor that is also a part of the LVAD system.
What excites cardiologists like Banerjee is the possibility that, with the LVAD taking the strain off, some patients' hearts might recover enough to have the LVAD removed. The next step in heart care may be something that's more of a repair than a replacement, Banerjee said, "a ventricular device that would allow us to keep as much of the original tissue and native heart function as possible. It's always better to have what Mother Nature gave you."
Everything's been going good. Dr. Banerjee keeps saying, 'People aren't in your shape after having this.'
The LVAD became a part of Jackson's life in late September, and Jackson has a life that includes most of her previous activities. She reads on her computer, does laundry, changes the sheets on her bed and when the weather is good, goes for a daily walk with her best friend, Betty Birdsong. Sometimes they go shopping. "I do everything for myself," she said. "I've gotten used to all the equipment and stuff. And I'm planning a trip to Hawaii next year."
She sees Banerjee regularly and couldn't speak more highly of him and all the professionals at Stanford whom she came to know during her treatment. "I could not find one doctor who had a bad bedside manner!" she jokes. "And the nurses treated my family really nicely."
She would like to go to her water aerobics class again, and has suggested to Banerjee that perhaps a wet suit might work. He's looking into it, she said. A friend is putting together a backpack for the batteries that's a bit more feminine than the black one she currently wears. "Everything's been going good," she said, and, with a bit of pride, "Dr. Banerjee keeps saying, 'People aren't in your shape after having this!'"