James Rushing of Hueytown, Ala., a former Tarrant police dispatcher, misses swimming with his grandchildren. Preparing for a quick shower takes 30 minutes, and he carries a bag packed with batteries everywhere he goes.
Without those and other lifestyle adjustments, it is likely Rushing would not be alive.
Like thousands of patients throughout the world with end-stage heart failure,
Rushing lives with a mechanical heart pump – known as an LVAD, or left ventricular assist device – supporting his heart by circulating his blood.
Until now, there were no standardized recommendations from the medical community regarding patient selection, surgical preparation, inpatient management and long-term care considerations for mechanical circulatory support patients. That changed this month with the release of new guidelines published in the Journal of Heart and Lung Transplantation.
“There have never been guidelines that were this structured or this comprehensive,” said University of Alabama at Birmingham cardiologist Salpy Pamboukian, M.D., who co-chaired the committee that drafted the guidelines. She is also medical director of the mechanical circulatory support device program at UAB and co-section head of the section of advanced heart failure, cardiac transplant, mechanical circulatory support and pulmonary vascular disease in UAB Heart and Vascular Services. “There have been a lot of published papers on the management of patients with mechanical assist devices, but never really a best-practices guidelines document; never a comprehensive set of expert-reviewed and agreed-upon recommendations – until now.”
Mechanical circulatory support is a relatively new technology that has its roots in clinical trials going back to the early- and mid-1990s. That is when mechanical heart pumps were tested as a bridge to heart transplantation to keep patients alive long enough for a donor heart to become available. In the past decade, the use of these devices has been extended to destination therapy – an alternative to heart transplant. These patients are able to return home and resume a relatively normal lifestyle, with a few adjustments.
Pamboukian said the new guidelines are important for establishing the best ways to keep patients healthy over the long term.
“When we put these devices in, we really want the patient to not only have quantity of life, but quality of life as well,” she said.
Pamboukian said the new guidelines that outline best practices combine all of the current knowledge base and data available, which encompass United States and international practices. In addition, the guidelines were created independent of the different types of devices from various manufacturers, so they are general enough to remain applicable whether a patient receives an FDA-approved device or a device through a clinical trial.
“It covers the spectrum from the time the patient presents to a VAD program for evaluation,” Pamboukian said. “This includes the preoperative optimization that is necessary, how to manage the patient after surgery, what to do in the early postoperative period and onward throughout the life of the mechanical circulatory support patient. These guidelines address all considerations for the patients.”
Of the points addressed in the new guidelines, patient selection is very important, Pamboukian said. Taking the right patients to surgery means those patients have the best chance of survival through the surgery and the early postoperative period. There are also other key factors addressed in the guidelines that play into the long-term success of patients, including regular checkups to monitor for complications with the patient or device, and making sure all other health concerns are addressed.
In many regards, the most important factor addressed in the guidelines, Pamboukian said, is the need for patient education and support – both social support and support from the patient’s VAD program. These can determine long-term success of mechanical circulatory support.
“As doctors and nurses, we can get patients through the hospital stay,” Pamboukian said. “We can get them through surgery and nurse them through the recovery period, but once they leave the hospital, how they do over the longer term very much depends on the their program and their social support. It’s key they have family members who are familiar with the device and know complication signs, as well as when to call the team for the patient to return to the medical center to be evaluated. Patient education can’t be stressed enough. They have to be fully engaged in their self-care for this to work – not only in regards to their heart condition, but to their general health considerations as well.”
Rushing and his wife, Donna, agree that support for the patient and caregiver is crucial.
“My wife, my sisters and my daughter said they would support whatever I decided before I got the VAD, and they have,” Rushing said. “After I got the VAD, I saw the importance of the support group, and I enjoy going. We delight in seeing each other and sharing. I also met people online through Facebook and other sites for VAD patients, and we have become best friends. We support each other online. We cry together, laugh together and pray a lot for each other. We keep up with what each other is going through. Support from other VAD patients is as important as family support.”
The support from UAB’s VAD program, added Donna Rushing, “has been extremely helpful because there are times when you are at your wits end, and you don’t know what they need, and sometimes they can’t tell you exactly what they need. I can pick up the phone and call any of the coordinators and say, ‘O.k., this is going on, what do you think I need to do?’ And they’ll walk me through it. We had an event where his controller went bad, and they talked me through how to change it. It was very stressful and scary because, for that split second, I literally had his life in my hands. Their support was tremendous.”
Pamboukian said she believes the guidelines will be a very important springboard for further use, research and development in the field.
“I think we’ll see more and more patients take advantage of this technology as physicians outside academic practices become more aware of the technology,” she said. “I think they will refer more patients, and more people will be able to benefit from this treatment. It will be very important that we keep these guidelines updated on a regular basis as technology improves and we continue to learn the best ways to treat these patients.”