Big Heart Problem (Part One)
The first of a four-part series on heart failure
Heart failure sounds catastrophic, and untreated it can be, but with treatment it is a manageable condition.
Heart failure (HF) is the name given to a condition in which the heart muscle is unable to pump enough blood to meet the body’s needs for blood, oxygen and nutrients. “Basically, the heart can’t keep up with its workload,” said Mariell Jessup, professor of medicine at the University of Pennsylvania Heart and Vascular Center. “Because of the lack of oxygen in their brains, organs and muscles, patients with heart failure feel tired and breathless. They may develop fluid retention and become gradually less able to exercise. Those are the classic symptoms of heart failure.”
At first the heart tries to keep up with its workload of pumping about 2,000 gallons of blood each day by:
- Enlarging. When your heart chamber enlarges, it stretches more and can contract more strongly, so it pumps more blood. However, with an enlarged heart, your body starts to retain fluid, your lungs get congested with fluid and your heart begins to beat irregularly.
- Developing more muscle mass. The increase in muscle mass occurs because the contracting cells of the heart get bigger. This lets the heart pump more strongly, at least initially.
- Pumping faster. This helps to increase the quantity of blood.
The body tries other ways to compensate:
- The blood vessels narrow to keep blood pressure up, to make up for the heart’s loss of power.
- The body diverts blood away from less important tissues and organs (like the kidneys) to the heart and brain.
These measures only mask the problem, they don’t solve it. HF continues and worsens until eventually the heart and body just can’t keep up, and the person has the fatigue, breathing problems or other symptoms that Jessup described.
That’s exactly what happened with nurse Teri Dodd of Anderson, Indiana. In November 2014, she developed a nagging, dry cough and shortness of breath. A 49-year-old night nurse, she often walked after her shift before going home to bed, “but the shortness of breath was making that uncomfortable,” she said.
After a 12-hour shift on a Friday, she was exhausted and decided to visit her doctor on Monday. After he had diagnosed the problem as asthmatic bronchitis, Dodd mentioned that her mother had died of heart disease. The doctor sent her for an electrocardiogram, which showed a heart rhythm problem and prompted an echocardiogram (echo).
Following the echo, she was admitted to the hospital, which was a big surprise, as were the words of her new doctor, a cardiologist: “He explained that my heart was only squeezing about 5-10 percent, and that I was a very sick woman.” She was going to need meds, a strict diet, possibly a heart pump and maybe to be put on the transplant list. “He said that I was disabled, and my life was going to be very changed,” she said.
These conditions had not just suddenly arisen, they had been developing over time. However, the body’s attempts to compensate help explain why people often don’t become aware of their condition until years after their heart begins its decline. That’s a good reason to have a regular checkup with your doctor.
The doctor’s first job is to find out why the heart is failing. According to Jessup, there are typically four things that cause HF — a problem with the heart valves, the heart’s rhythm, the heart muscle or a combination of those things.
“In general, we have pretty good ways of dealing with both valve disease and arrhythmias but fixing the heart muscle is a lot harder,” Jessup said.
In HF caused by a muscle problem there are two major types: Heart Failure with Reduced Ejection Fraction (HFrEF, referred to as “hef-ref”) where the heart pumps less blood, and Heart Failure with Preserved Ejection Fraction (HFpEF, “hef-pef”), where the heart pumps enough blood but has other problems, like valve disease. Dodd’s doctor was referring to the ejection fraction when he said her heart was pumping only 5 percent to 10 percent. Ejection fraction is an indicator of how well your heart is pumping out blood. A normal ejection fraction may be between 55 percent to 70 percent.
Dr. Mariell Jessup
The typical patient with HF is age 75. That’s because many of the reasons people develop HF are related to longstanding problems with hypertension, diabetes, obesity or lack of physical activity or all of them combined. “About one in five adults over the age of 40 will develop heart failure,” Jessup said. “In the vast majority of elderly HF patients hypertension plays a major role. There are estimates that if we could control hypertension, we would reduce the incidence of heart failure by half.” A second major cause of HF is atherosclerosis. HF consumes more Medicare dollars than any other diagnosis.
But not everyone with HF is elderly — children and young adults may develop HF either through inherited disorders of the heart, congenital heart disease or other muscle problems in the heart. “More and more, we are recognizing that young adults and children with HF may also have a genetic abnormality that causes their cardiac muscles to be weak,” Jessup said. “Now when we identify children with HF, we screen their parents. And likewise, when we identify young adults or middle-aged adults, we often will screen their siblings and children.” A cause for Dodd’s HF was never isolated.
Why HF Progresses
As the heart weakens and compensates by enlarging, it becomes less efficient — squeezing out less blood with each contraction. When the organs do not get enough blood and oxygen, a chemical system is activated. “The kidneys begin to hold on to salt and water in the blood, which causes the blood volume to expand,” Jessup said. “And that increased blood volume gets reflected into the lungs so it’s harder to breathe and there are higher pressures within the veins and arteries so people develop [swelling]. All this contributes to the progressive nature of the disease process.”
In addition, these chemicals make the patient thirsty so they drink more, which increases the amount of fluid the heart has to pump. This sets up a vicious cycle.
Dodd had been retaining fluid for some time but did not notice it because it was in her abdomen, not her ankles. “My pants were getting tight but no matter what I did, I couldn’t lose weight,” she said. “In the hospital they drew off 20 pounds of fluid.”
Prognosis and Treatment
HF survivor Teri Dodd with her husband and caregiver Bill
According to Jessup, the average HF patient has a prognosis for survival of about five years, but the average patient is 75, “and many 75-year-olds will be gone in five years,” Jessup said. What she says to younger patients is that the prognosis is highly variable depending on the cause and the initial age of the patient.
Not that long ago, a diagnosis of HF was a death sentence, but today there are effective treatments that allow the disease to be managed. Controlling high blood pressure helps immensely. “And then there are the drugs that have truly revolutionized the management of patients with HFrEF — ACE inhibitors, beta blockers and aldosterone antagonists. And the use of devices like implantable defibrillators and a special pacemaker called cardiac resynchronization therapy really helps,” Jessup said.
In addition to having medical devices and taking their medications, HF patients need to restrict salt in their diet and get regular exercise and get to an optimal weight and then maintain it — “All of these things help very much,” Jessup said.
Dodd’s treatment includes daily medication, a threelead defibrillator, cardiac rehab (which she loves) and a reduced-salt diet, which has been challenging. “I am always looking for tasty no- or low-sodium snacks,” she said. “My latest is no-salt rice cakes with unsalted/roasted almond butter. I also make a fresh salsa with no salt that I eat on the rice cakes.”
An estimated 5.7 million adults in the United States have HF. It is so prevalent that there probably aren’t enough cardiologists to take care of all of the patients, so it is often treated by an internist or general practitioner. That makes educating patients about the seriousness of their condition especially important, “so that if their symptoms aren’t getting better, they certainly should go seek the advice of a cardiologist,” Jessup said.
Dodd’s HF has had a big impact on her life — even though she has been cleared to work, she cannot return to the job she loved as a nurse in labor and delivery because she can only work eight-hour shifts and can’t lift more than 25 pounds.
“Life is not over,” Dodd said, “it is just a new adventure. That’s what I would say to someone with a new diagnosis, make it an adventure. Find things you can do! Do them with a smile. Don’t forget to grieve; you have lost something valuable, but you have gained something. Find what it is. This might have been a wakeup call. Listen!”
Jessup is equally upbeat: “In the vast majority of patients, HF can be controlled, people can lead normal lives. There are new drugs coming out all the time. So don’t just accept it and resign yourself to having a poor functional quality, there is great hope.”
Caring for a Loved One with HF
Bill Dodd’s reaction to his wife Terri’s HF diagnosis was “disbelief, dismay and disorientation,” he said, “but over time I came to acceptance of both the diagnosis and the life changes.”
He drives her to cardiac rehab and appointments and takes Terri walking at the mall. “I make her laugh and spend as much time as I can with her,” he said.
“Bill lets me talk and say the same things over and over,” Terri said. “It has been hard to accept that I could have died, and that now I need a device in my chest and to take meds every day.”
According to Jessup, caregivers have an important role to play. “They need to make sure [their loved ones] take their meds and comply with a reduced sodium diet,” she said. “It’s hard to reduce sodium. And to help patients not drink too much fluid. If they drink gallons of fluid, they will always be filled with extra salt and water and still be short of breath despite taking a lot of medicine.”
Rise Above HF
Heart failure is one of the most common heart diseases in the U.S., with more than 870,000 new cases reported annually and one in nine deaths including HF as a contributing cause. It is estimated by 2030, the number of people in the U.S. diagnosed with HF will increase from about 6 million to nearly 8 million. Total medical costs to treat the condition are projected to increase from $14.3 billion in 2015 to $29.2 billion in 2030. And indirect costs of HF, including work loss, household productivity losses and premature mortality losses, are projected to increase from $8.2 billion in 2015 to $12.3 billion in 2030.
Because of this, the American Heart Association is launching a national campaign aimed at changing the course of this disease through awareness, education and support.
Rise Above HF, supported by Novartis Pharmaceuticals, seeks to improve the lives of people affected by HF, by making a measurable impact on HF by:
- Increasing awareness of HF and its symptoms and treatments,
- Empowering patients to take a more active role in their care,
- Encouraging small behavior changes that can lead to healthier lifestyles and
- Collaborating with an alliance of like-minded organizations to implement strategies to support a goal of reducing hospitalization rates by 2020.
This article is the first in a four-part series. See the other available articles in the series:
The Ins and Outs of Hospitalization (Part Three)