6 Tips to Ease Stress While Waiting for a Heart Transplant
1. Lean on Staff for Help
Whenever you have questions, call someone on the heart transplant team, says Tamara Kelley, RN, a heart transplant coordinator at the University of California in San Francisco. "Don't let things weigh on your mind, and don't ever be afraid to reach out for help," she says.
Most patients go through ''high highs and low lows," says Kelley. So her team includes psychiatrists and social workers who are all tuned in to what someone awaiting a heart transplant may be going through.
"It's a lot of talking and a lot of reassurance," she says of her work.
2. Take Control of What You Can
Although it can seem like nothing is in your control when you’re on that heart waiting list, look for something you can control, Kelley suggests.
She remembers one woman who had been treated for heart failure for 25 years; when the woman suddenly got sicker, she was told she needed a heart device known as a left ventricular assist device (LVAD) — and eventually a heart transplant. The news wasn't unexpected, but when you first hear it, it can make you feel helpless, says Kelley.
The woman decided to take control in her own way. She told the medical staff, "Okay, I'm going to go home and spend the weekend with my dogs." After that experience, Kelley says, the patient returned to the hospital, ready to undergo treatment.
If you’re stable enough to leave the hospital while you wait for a transplant, you can resume normal activities as you are able, advises Kelley. This can give you a sense of control over your life.
3. Understand That No One Can Be Sure How Long You’ll Have to Wait
"There's not an average patient, and there are different levels of medical urgencies," says Joel Newman, a spokesperson for UNOS. Many factors play into how long a patient will wait, he says, including blood type. For instance, he says, "If you are an O [blood type], you can only get [the heart of] another O."
Waiting time varies in different parts of the country, and you can check the UNOS site for wait-time data by region.
But because of the many factors involved, your waiting time can be unpredictable, according to Josef Stehlik, MD, MPH, medical director of the International Society for Heart & Lung Transplantation's international thoracic transplant registry, and of the heart transplant program at the University of Utah Hospital in Salt Lake City. Even so, he says, doctors typically give patients an estimated waiting time: a range based on their condition and where they are on the list.
The harsh reality is that some patients don't survive the wait. According to UNOS, 22 people die in the United States each day waiting for donated organs, including hearts.
Once that ideal donor heart is located, patients and families should know they need to move quickly. "We would like you to be at the hospital within two hours," Newman says.
4. Learn How Advances in Technology May Help
These days, many patients have what doctors call a ''bridge to transplant," with a left ventricular assist device (LVAD) to help their heart pump well while they wait. These devices have been available for many years, but in the last 10 years, there’s been a marked increase in the number of them implanted, says Michael Givertz, MD, medical director of the heart transplant and mechanical circulatory support program at Brigham and Women's Hospital and professor of cardiovascular medicine at Harvard Medical School in Boston. That's because the devices have become more streamlined and more durable.
"Survival has improved significantly, and the complication rate has decreased," says Dr. Givertz.
Those who get an LVAD and are discharged, he says, should ''be living life to the fullest and maximizing the quality of life,'' not sitting and waiting for their transplant.
RELATED:Healthy, Fit, but Hit by Heart Failure
5. Expect Donor Grief — It’s Common
It’s a tough reality, as Amy Hackmann, MD, a heart transplant surgeon and assistant professor of clinical surgery at the University of Southern California Keck School of Medicine in Los Angeles, knows. "One of the hardest things people struggle with is that something bad has to happen to someone else for them to get their heart."
She tries to help patients cope with that grief by reminding them, "Whatever is going to happen to their donor is going to happen." Instead of feeling guilty that the donor has to die to give a heart-transplant patient life, she suggests patients focus on the fact that the donor was thinking ahead to make life easier for others.
Once some time has passed, Dr. Hackmann says, ''We encourage people to write a letter to the donor family ... to thank them and to tell them what they plan to do with the second chance they have been given.''
UNOS offers help to those struggling over what to write.
Some recipients and their families are so grateful for a new heart that they become activists in organ donor educational efforts, say Drs. Stehlik and Givertz. "They do everything they can to raise awareness of organ donation," says Givertz.
Those who have been through the wait know how difficult it can be, Stehlik adds. And they also know that increasing the organ supply is a sure way to shorten the transplant waiting times.
6. Talk to Transplant Recipients About Their Experience
Asking your doctor about the transplant procedure is just one way to learn about heart transplants, Stehlik says. He also encourages patients who need a transplant to meet with another patient, one on one, or in support groups. That allows you to be truly informed before consenting to the process. You need much more than the perspective of the medical team, Stehlik says of heart transplant recipients.
Video: heart failure | 3 Tips to Ease Stress While Waiting for a Heart Transplant | Heart Failure Causes
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