Comfort Comes in Different Flavors

Dennis was clear, he wanted sympathy and acknowledgment that the risk was all his.

Survivor Dennis Dobkowski with wife Ann

After 44 years of marriage and 44 years as a nurse, Ann Dobkowski thought she knew what would ease husband Dennis’s anxiety when he needed aortic heart valve replacement surgery at age 67.

Dennis had had a heart murmur for years, and it was nothing of concern. For a decade, it required nothing more than an extra conversation with the doctor each year, which always ended with assurances there was nothing to worry about. The condition, caused by aortic valve prolapse, is harmless in most cases, and many people who have it don’t experience any symptoms.

In July 2014, a routine echocardiogram indicated the impact from the murmur had grown, and the valve would require surgery in a year or two. Four months later, Dennis began to experience troubling symptoms. He was exhausted and felt like his heart was fluttering or skipping beats. His surgery would be in two months. Suddenly the operation was no longer abstract, and that was terrifying.

Ann thought she knew how to handle that situation — empower yourself with knowledge. “I knew this surgeon because he worked at a hospital where I had worked for many years,” she said. “I knew he was good, so that made me feel better.” She investigated the anesthesiologist and cardiologist. “I’m all about finding the right people because I’ve always figured, ‘If you’re in the best hands around, you stand the best chance of a good outcome.’”

Her confidence had no effect on Dennis. He was totally focused on his own vulnerability and his own fears. He did his own research. “I talked to a woman who had had the same surgery who worked for the company supplying the bovine replacement valve,” Dennis said. “She was very positive and had had a good experience.” But all that didn’t quiet his fear.

“I thought, ‘How doesn’t this make you feel better,’” Ann said, adding that she probably came across as cavalier at the time. “I was looking at the statistics and reality of outcomes. His reaction was, ‘It’s not your chest they’re cracking open.’”

Realizing that she was not helping Dennis, she asked him directly what he wanted her to do. He was clear, he wanted sympathy and acknowledgment that no matter the statistics or doctor’s reputation, there was risk involved, and that risk was all his. Ann was able to provide this comfort before the surgery.

Dennis’s recovery did not go smoothly. He was walking in the stairwell, regaining strength and preparing to be discharged to their two-story home, when Ann realized that something was wrong. “As he was coming down the stairs, I could see that his lips were kind of blue and it was blue around his mouth,” she said. The physical therapist ordered him back to his room, and a trail of blood followed him. Evidently some clots around tubes draining his chest had ruptured. Alarms started going off, and it took almost 12 hours for things to settle down. He stayed an extra three days because of that situation. “I think it probably scared the heck out of him,” Ann said.

Dennis had been diagnosed with diabetes seven years before, but he had lost weight and his blood sugar was well controlled with oral meds. But after surgery, he had a hard time maintaining a healthy blood sugar.

His sleep cycle was disturbed “Sleep came and went,” he said. “I never settled down at night. I’d be up at night and sleep in the day. It took a while for my body to get back in rhythm.”

And then there was the depression. Ann couldn’t get Dennis to do the exercises he was supposed to do. “I think part of that was the depression,” she said. “He felt so overwhelmed by not being able to bounce back like the woman he talked with. She was back playing tennis within a few weeks, and Dennis was nowhere near that. Of course, she was 20 years younger than him. But when he couldn’t progress as fast as he wanted to initially, he wondered, ‘Am I ever going to be normal again? She said this and I’m feeling this.’ He really didn’t talk to anybody his age, only to people who were younger. Comparing their experience to his was depressing to him.”

About six weeks after surgery, he returned to processing disaster loans for the Small Business Administration. “I was excited about going back to work, to do something, even if it was just four hours a day for the first month,” he said. “It kept my mind busy and the support I had from the staff at work was terrific. That really helped me along and luckily, I had enough vacation time that it didn’t affect my paycheck. Going back to work was a good source of getting back to normal.”

Today, the Dobkowskis have returned to normal. They have retired and moved from southern California to Utah. They are active and have become Heart Valve Patient Ambassadors for the American Heart Association, where they regularly get to share what they have learned about coping, both physically and emotionally.

Dennis realizes now that Ann could not give him what he wanted, because she really could not know the fear he was experiencing. What he was looking for was the support he found and now gives through the Support Network. “Heart patients need the support of other heart patients,” he said. “We know what it’s like.”

Dennis’s advice to patients

“Get as much information as you can. Sit down with family and friends and go over what’s going to happen. Prepare for after surgery. Get as much information as you can to prepare for after surgery because that’s important and makes things easier for those first few months of recovery. Find a support group and sign up with the AHA Support Network. If you need to, get on the phone and call somebody and talk. Plan some activity into your recovery. That’ll help you get through it.”

Ann’s advice to caregivers

“Be very patient. Let them progress to a certain extent at their own speed. Involve other people in the process; don’t try to do it all alone. Look out for your loved one in the hospital and in the doctors’ offices. I encourage every caregiver to go to every appointment with their loved one and ask questions. If you’re not satisfied with the answers, say so. If possible, tape record your doctor appointments, because anytime you are in a stressful situation, you will forget most of what is being said. Let the doctor know that you’re terrified. One of the things that was a problem for Dennis was that his cardiologist, who was absolutely superb clinically, treated the operation as no big deal: ‘We do this all the time.’ Well, the doctor may do it all the time, but the patient doesn’t.”

Pre-Surgery Tips for Patients & Caregivers

Nurse Practioner Sara Paul

Nurse practitioner Sara Paul, director of the Heart Function Clinic at Catawba Valley Cardiology in Conover, North Carolina, interacts with heart patients every day. “Not everyone has the same emotions [as Mr. Dobkowski],” she said. “Some people are very relieved that there’s a surgery that can correct their problem and they look forward to it.”

Her job is to explain to patients what the problem is, what to expect from surgery and how that’s going to help their heart. “I believe that kind of explanation allays a lot of fears,” she said. “I think what they’re afraid of is the unknown.”

For those patients who are not necessarily comforted by a detailed explanation of the road ahead, she counsels caregivers to be empathic. She suggests one way to respond is to say, “You’re right, it’s not me having the surgery and I respect that you’re afraid. I understand why you would be. But I love you and I want to support you and I certainly don’t want anything bad to happen to you.”

“It’s important to make the patient understand that the caregiver is on his side every step of the way, that he is not alone,” she said. “I think reassurance is about the best the caregiver can do.”

Paul suggests that support can take other forms as well: “Being there, helping your loved one from day to day, not dwelling on the situation, helping them live their normal life as much as they can up to the point of surgery — that is enormously helpful,” Paul said. She adds that it is not helpful for caregivers to wring their hands and panic about it, which makes matters far worse. “For those patients who continue to be anxious, make an appointment with your provider to explain things a little better because ‘he’s really scared,’” she said.

After surgery, the caregiver takes on a hybrid role — a mix of cheerleader and task master. Too much sympathy can be counter-productive, but it is also necessary for the caregiver to be cognizant of the patient’s needs. “In a busy nursing unit, the patients might not get as much attention as they really need postoperatively,” she said. “So, they need to make sure their loved one is getting the care they need and making sure that questions are asked when the physician or the surgeon makes rounds. But they also need to be objective and positive such as, ‘Let’s go for a walk in the hall. Let’s do the physical therapy. I’ll come with you.’ And stay nearby because being in a hospital alone is no fun. So, empathy for pain and fear, but advocating for the patient by writing down and asking questions and following through with the treatments.”

Patients just home from surgery may not be cooperative in complying with their medical, physical activity and dietary regimens. “Every wife wants her husband to get up and get some exercise,” Paul said. “But some husbands want to sit in their easy chair and not get up and walk. When that happens, I suggest the caregiver offer to go with the patient to the gym or walking. But you can only motivate someone as far as they will motivate themselves. At some point, urging becomes nagging and that is counter-productive.”

“I’ve had caregivers call me before a patient’s appointment and say, ‘Listen, he refuses to do this or that. Please don’t tell him that I called you, but I want you to know that he’s not doing this.’ When they come in to the appointment, I reinforce that it is important that the patient do whatever it is — cardiac rehab or a daily walk or physical therapy exercises or lifestyle change or taking prescription drugs.”

Other common points of contention are patients who insist on being in control and resist complying with medical or lifestyle prescriptions as a way of demonstrating that they are in control. “This can be problematic for the caregiver or family members who see that their behavior is compromising their recovery,” Paul said. “This is another situation where it is good to get the provider involved.”

On the other end of the spectrum is the patient who refuses to be responsible for his or her own care. “They don’t know what medication they’re taking because someone else — a family member or a home health aide — is putting it out for them,” she said. “I tell them they have to be accountable, they have to be invested in the treatment, especially if they are a widow or widower, because at some point they’re likely to be on their own and responsible for following that prescription.”

Paul urges caregivers to consider the amount of change many patients are accommodating. “If you think about it, if someone has a stent or heart surgery, yesterday they may have been smoking, not exercising, eating whatever they wanted, and today because they had heart surgery, we say, ‘Okay, stop smoking, get more exercise, get off the couch, change your diet completely from what you’ve been eating, and we want you to do that from this day forward.’ That is a lot of change.”

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