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HEART Insight:
doi: 10.1097/01.HEARTI.0000286143.90327.d5
Features: Heart-To-Heart/Worrying For Two

From Waiting List To Transplant, Caregivers Have A Lot To Handle

Pelus, Sandra MS

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Additional reporting by Ruth Papazian.

Heart transplant patients all have something in common: Someone else's heart is beating in their chests. But aside from this startling–and miraculous–fact, they and their caregivers are all as different as can be when it comes to how well they handle the emotional ups and downs they experience before and after the procedure.

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From the moment a patient is told that he or she will likely need a heart transplant, a slew of concerns and questions come to mind: What if a donor heart is not available in time? What if the body rejects the organ? What if the immunosuppressant drugs that prevent rejection cause a life-threatening or even fatal infection?

Weeks to months may pass before a suitable heart is found –body weight and tissue matching are important criteria–and there is a long list of people waiting for a new heart. The delay and uncertainty place tremendous stress on patient and caregiver alike, notes Richard A. Stein, M.D., Director of Preventive Cardiology at Beth Israel Hospital in New York City.

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Pre-Transplant Jitters

Diane Bik, a Chicagoan, received a new heart two years ago, at the age of 69, after her own heart was irreparably damaged by chemotherapy she received 20 years earlier.

“A transplant was the only course of action,” her husband, Wayne Bik, 72, says matter-of-factly. A stoic, no-nonsense fellow, Wayne chose not to dwell on whether Diane would hang on long enough for the transplant to occur: “It's a ‘never-know’ situation. Either we're going to be lucky, or not. It's as simple as that.”

Wayne said that Diane “never complained” about her health, but she did vacillate about whether to give her doctors the go-ahead to put her on the waiting list. “I was scared. I knew nothing about [heart transplants] and didn't know anyone who had had one,” she recalls. “I thought I would be in pain or would have to go on life support for weeks.”

If she was ready to die, Wayne did not want to pressure her –but at the same time, he “just knew” she would decide in favor of the transplant. “It was her choice. I told her my feelings once, and never again,” says Wayne, in his typically understated style.

Diane's health was steadily deteriorating. “It wasn't fair to my husband. He was doing everything [for me], and we couldn't go anywhere or do anything together.” And, she wanted to see her grandchildren–she had two at the time, now three. “I had to give it a shot, because I knew I was going to die. If I tried it and it didn't work out, at least I would have given myself a chance.”

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Diane was hospitalized several times, and also had to have gallbladder surgery (the problem with her gallbladder was unrelated to her heart failure). “After the surgery, I was going downhill.” She was put on a waiting list for a new heart.

In the best of all possible worlds, a heart may be found quickly –in Diane's case, it took about a month. Still, Diane almost didn't make it. “The day before the transplant, my heart was functioning at about five percent and I was so bad that my family was making funeral arrangements.”

When the doctor told them that a donor heart had been found for Diane, Wayne likened his sense of elation to “the bases are loaded, and the batter hits the ball out of the park.” A grand slam home run.

Aside from several episodes of urinary tract infection, for which Diane needed to be hospitalized, she's doing very well today. She takes two immunosuppressive drugs, plus a low-dose aspirin tablet, vitamins, and iron daily–and she has enough energy to baby-sit her grandchildren a couple of days a week.

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Post-Transplant Complications

Amanda Eason became a mother for the first time at the age of 23. Her son, Jacob, was born with hypoplastic left heart syndrome –“the entire left side of the heart is underdeveloped and non-functional”–and he received a new heart at the age of six weeks.

After his heart transplant, Jacob's recovery was complicated by reflux, so he was unable to keep his liquid medicines down–including immunosuppressant drugs that would help prevent rejection of the new heart. Amanda had to work closely with the transplant coordinator to figure out how much medicine he “lost” and adjust the dosages accordingly–while being careful not to overdose Jacob, which was a challenge during the first three years of his life.

Making matters worse, Jacob repeatedly came down with viral infections as a toddler, because of the drugs used to suppress his immune system. Each time, he developed a fever high enough to cause seizures and ended up in the emergency room.

The whole time she was dealing with Jacob's health problems, Amanda felt vaguely responsible for his heart disorder and continually fretted that she may have done something during pregnancy to cause it. Her husband, Mike, now 38, is a police officer, who “saw parents neglect or abuse their children, and was fixated on ‘Why did this happen to us?,’” says Amanda.

At the time, there were no support groups for parents of children like Jacob that Amanda and Mike could turn to. “We spent three months at the Ronald McDonald House near the hospital where, alone together in our room, we talked things out,” says Amanda. One nurse said something that resonated with the couple: “She said we were blessed to have a special needs child, because G-d knew we would take care of him,” says Amanda.

“And then we knew we had no choice but to deal with it. This was going to be our life, and we just went forward every day. Our major goal then was to achieve a first birthday,” recalls Amanda. “Now we're getting ready for Jacob's eleventh birthday!”

Today, Jacob is active and healthy. He takes a single, low-dose immunosuppressant pill every day, along with a medication to prevent high blood pressure, and antihistamines for an allergy that is unrelated to the transplant.

Nearly five years after Jacob's operation, Amanda gave birth to a healthy boy named Noah. “Jacob and his little brother play rough, just like normal kids do. We really don't worry about his heart.”

To help other parents in her situation, Amanda started a Jacksonville (Fla.) branch of Mended Little Hearts, www.mendedlittlehearts.org, a program that offers support and encouragement for caregivers of children born with congenital heart disease.

Jacob sometimes attends meetings with his mother and is proud to tell the audience he is there because he received “Mark's heart,” an infant who died 10 days after birth.

Caregivers have emotional hurdles to deal with from the time their loved one is placed on the waiting list for a new heart all the way through post-transplant recovery. Caregivers are typically advised to join a support group, so they can talk about their concerns. “Even if you think this won't help you, it will,” assures Stein.

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Even When It's Over, It's Not Over

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Bob Johnson, 67, received a new heart six years ago when he developed heart failure after two heart attacks.

His wife of 36 years, Cora Johnson, 62, wishes she had shown Bob more empathy before his transplant. Instead, to keep her mind off her worries, she threw herself into her job as a high school librarian.

“I detached myself, and didn't show my feelings so that I could deal more effectively with day-to-day events. But I think my husband needed more encouragement, especially when we were waiting for the donor heart–and it took 14 months to get one.”

“His health was continually deteriorating. He was tired all the time, out of breath,” says Cora. The last couple of months were really rough, recalls Bob. “I was in and out of the hospital because of severe water retention that strained my heart and lungs.”

“He was almost out of the picture,” says Cora. “He got the new heart just in the nick of time.”

When he woke from surgery, Bob was told he had been given the heart from a 24-year-old and “it just took me back a little bit, knowing that the donor had not had a full life.”

The steroid medication he was given after surgery caused severe depression. “I was overwhelmed with guilt when I realized a young man had died, but I still lived with his heart in my chest.” He also said that he “had no get up and go, anymore.”

Bob sought counseling from a psychiatrist who helped him put his feelings into perspective. “She explained that even if I had not taken the heart, someone else would have–and that the young man would still be dead, and so would I.”

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Partners For Life

A good and committed caregiver is essential to the complete recovery of the transplant patient. In fact, a transplant candidate who does not have a responsible caregiver may be turned down for a new heart, says Stein.

Looking back, Bob realizes that his wife had been through a lot. For instance, since he was homebound [before the transplant], he eagerly waited for his wife to come home from work every day and take him out for a drive. “She would be bone tired, but would still take me around,” he recalls.

“A caregiver of a patient with a new heart has to be a very special person,” says Bob.

Most people would agree, but to Wayne, “if you love someone, you do whatever you can.” In his case, that meant doing all the cooking and cleaning–“the whole schmear”–taking Diane to the hospital twice a week and helping her get in and out of a wheelchair. “Diane and I will be married 50 years in September, and I can't understand not having compassion for someone you've been with.”

Although he was prepared to lose Diane–and almost did–Wayne says, “if you've done your best, you don't have to feel badly if [the transplant] doesn't work out.”

As these patient-caregiver stories show, some patients have a hard time recuperating after the transplant surgery, others bounce back pretty quickly. Some caregivers are rocked by powerful emotions, others turn their feelings off so they can keep home and hearth functioning smoothly while also getting their loved ones to all their doctors' appointments pre- and post-transplant. Fortunately, today, transplant recipients–and their caregivers–can rely on a variety of medical specialists, organizations, support groups and resources to help them get through the physical and emotional challenges.

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10 WAYS TO COPE WITH CAREGIVING

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1. Get regular physical activity.It's a good energizer, reduces stress, helps control blood pressure and cholesterol and helps maintain a healthy weight. Start by walking 15 minutes a day, even if it's just around the yard.

2. Eat heart-healthy foods.They give you more energy, combat depression and help prevent health problems.

3. Take time every day to do something that you enjoy.Read, listen to music, do crafts, cook—whatever makes you happy and relaxes you.

4. Keep humor in your life.Laughter is good medicine. It quickens the pulse rate, stimulates blood circulation, activates muscles, increases oxygen intake and fosters relaxation. And remember, laughter is contagious!

5. Get out once a week.Go to a coffee shop, attend events in your community or at your house of worship, take a class or visit a friend. Ask for help if your loved one needs constant attention.

6. Treat depression and stress.Recognize signs and symptoms. When they start to occur, do something about them. Get help. Talk it out. Admit your feelings.

7. Take care of your business.Keep your checkbook balanced, work when you need to, spend time with friends and family and keep planning for the future.

8. Keep all medical and dental appointments.If you're sick, you won't be able to do what you need to do for your loved one. Ask for help when you need to get away and take care of your health.

9. Think positive.Refresh your mind every day. Admit your limitations. Pat yourself on the back for the job you're doing. If you're feeling guilty or angry, it's time to take a break.

10. Stay connected with the outside world.Don't isolate yourself. Stay in touch, even if it's just by phone or online. Talk about something other than your situation and maintain an interest in the world outside your caregiving role.

Source: American Heart Association and American Stroke Association

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CAREGIVER RESOURCES

American Heart Association

1-800-AHA-USA1

www.americanheart.org/caregiver

Helps you find a balance between taking care of someone else and taking care of yourself so you can keep giving and tending to your loved one without becoming physically and emotionally depleted. Also provides information on caregiver and patient resources.

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The Mended Hearts, Inc.

1-888-HEART99

www.mendedhearts.org

Provides support for the emotional aspects of recovering from heart-related illness. There are some 260 chapters nationwide; the Albany, NY, chapter is dedicated to heart transplant recipients.

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American Association of Retired Persons

202-434-3525 or 888-OUR-AARP

www.aarp.org

Includes information on caregiving under the “Family, Home and Legal” tab.

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CareFinder

800-272-3900

www.alz.org/carefinder

Although this Web site is sponsored by the Alzheimer's Association, the interactive CareFinder tool can be used by anyone who needs help with finding and coordinating care, as well as information on support and resources.

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Family Caregiver Alliance

415-434-3388 or 800-445-8106

www.caregiver.org

Provides caregiver support and educational opportunities through research, advocacy, legal consultation and training workshops.

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Family Caregiving 101

www.familycaregiving101.org

This Web site provides new ideas and helpful advice for you and a loved one who is chronically ill or disabled.

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Heartmates

612-558-3331

www.heartmates.com

Resources for the spouse, family and loved ones of a heart patient.

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National Alliance for Caregiving

www.caregiving.org

E-mail: info@caregiving.org.

Provides support to family caregivers and the professionals who help them.

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National Family Caregivers Association

800-896-3650

www.thefamilycaregiver.org

Free membership offered to caregivers, who can then receive a newsletter, resource referrals and other benefits.

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Visiting Nurse Associations of America

888-866-8773

www.vnaa.org

The VNA chapter in your area can point you to home healthcare services that can give a caregiver some much needed time off.

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The Well Spouse Association

800-838-0879

www.wellspouse.org

A nonprofit group providing support and advocacy for spouses and children of people who are chronically ill.

Source: The American Heart Association

© 2007 American Heart Association, Inc.

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