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Help for Patients & Caregivers


Health Issues - below are some of the most common health issues. Please feel free to read the information we have collected. Some of this information includes risks, tips, explanations, and prevention tips for patients and caregivers.
Alzheimers Diabetes Osteoporosis
Asthma Epilepsy/Seizures Parkinson's Disease
Breast Cancer Hepatitis C Sleep Apnea
CHF Multiple Sclerosis Urinary Incontinence
COPD Muscular Dystrophy Wound Care
Cystic Fibrosis Obesity  
     

Help for Patients and Caregivers : Congestive Heart Failure

What is CHF?
Common Symptoms
What Causes CHF?
Treatments/Medications
Medications
Additional Information


What is Congestive Heart Failure?

Congestive heart failure (CHF), or heart failure, is a condition in which the heart can't pump enough blood to the body's other organs. This can result fromNormal Heart vs. Congestive Heart

  • narrowed arteries that supply blood to the heart muscle — coronary artery disease.
  • past heart attack, or myocardial infarction, with scar tissue that interferes with the heart muscle's normal work.
  • high blood pressure.
  • heart valve disease due to past rheumatic fever or other causes.
  • primary disease of the heart muscle itself, called cardiomyopathy.
  • heart defects present at birth — congenital heart defects.
  • infection of the heart valves and/or heart muscle itself — endocarditis and/or myocarditis.

The "failing" heart keeps working but not as efficiently as it should. People with heart failure can't exert themselves because they become short of breath and tired.

As blood flow out of the heart slows, blood returning to the heart through the veins backs up, causing congestion in the tissues. Often swelling (edema) results. Most often there's swelling in the legs and ankles, but it can happen in other parts of the body, too. Sometimes fluid collects in the lungs and interferes with breathing, causing shortness of breath, especially when a person is lying down.

About five million Americans are living with heart failure, and between 400,000 and 700,000 new cases are diagnosed every year. Heart failure is serious and can be life-threatening. About 250,000 people die annually of heart failure.

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Common Symptoms?

Shortness of breath - If you have congestive heart failure, you may have difficulty breathing, especially when you lie down. This happens because you have to work a little harder to breath when you lie down because of the fluid in your lungs. You may awaken at night short of breath and have to sit or stand up to get relief. You may find yourself more comfortable with your head and chest elevated. As the buildup of fluid in the lungs become very severe, you may cough up frothy, pink liquid.

Exercise Intolerance - You may find yourself unable to tolerate exercise or even mild physical exertion. This happens because a failing heart cannot pump quite enough blood to provide all the oxygen and other nutrients your body needs while it is exercising. Your ability to exercise, even to walk at a normal pace, may be limited by feeling tired (fatigue) and shortness of breath.

Fluid Retention and Swelling - You may notice puffy swelling (edema) in your legs, feet, and ankles. Often, the swelling is more noticeable in the ankles or on the lower leg in the front where the bone is close to the skin. If you press down on the skin in the puffy areas, the indentation where your finger pressed may be visible for a few minutes. This swelling may be so severe as to reach up to the hips.

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What Causes Congestive Heart Failure?

Heart failure often occurs because other cardiac conditions have damaged or weakened your heart, forcing it to work harder. A weakened heart can't pump blood efficiently throughout your body. This causes blood to pool in your legs, feet and ankles, your kidneys to retain excess water and sodium, and fluid to back up into your lungs, leading to shortness of breath.

Heart failure often results from the stress of a heart attack, high blood pressure, or other forms of heart disease such as valve disorders. In fact, all of the behaviors that you probably associate with heart attack or heart disease — such as smoking, being overweight, eating foods high in cholesterol and fat, and not exercising — also cause or contribute to heart failure. Sometimes, your heart becomes weakened without explanation, a condition known as idiopathic dilated cardiomyopathy.

If you have heart failure, chances are you've had one or more of the following conditions:

  • Hypertension (high blood pressure)
  • Coronary Artery Disease
  • Heart attack
  • Faulty heart valves
  • Cardiomyopathy
  • Heart defects present at birth (congenital heart defects)
  • Abnormal heart rhythms (heart arrhythmia)

 

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Treatments for Congestive Heart Failure

If you have heart failure, your doctor will monitor you closely. This means having follow up appointments at least every 3 to 6 months, figuring out any underlying cause and treating it, and periodic testing of your heart function. For example, an ultrasound of your heart, called an echocardiogram, will be done once in awhile to give an estimate of how well your heart is pumping blood with each stroke or beat.

It is also your responsibility to carefully monitor yourself and help manage your condition. One important way to do this is to track your weight on a daily basis. Weight gain can be a sign that you are retaining fluid and that the pump function of your heart is worsening. Make sure you weigh yourself at the same time each day and on the same scale, with little to no clothes on.

Other important measures include:

  • Take your medications as directed. Carry a list of medications with you wherever you go.
  • Limit salt and sodium intake.
  • Don’t smoke.
  • Stay active. For example, walk or ride a stationary bicycle. Your doctor can provide a safe and effective exercise plan based on your degree of heart failure and how well you do on tests that check the strength and function of your heart. DO NOT exercise on days that your weight has gone up from fluid retention or you are not feeling well.
  • Lose weight if you are overweight.
  • Get enough rest, including after exercise, eating, or other activities. This allows your heart to rest as well. Keep your feet elevated to decrease swelling.
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Medications

Medications that your doctor will consider prescribing include:

  • ACE inhibitors such as captopril and enalapril -- these medications open up blood vessels and decrease the work load of the heart. These have become an important part of treatment
  • Diuretics -- there are several types including thiazide, loop diuretics, and potassium-sparing diuretics; they help rid your body of fluid and sodium.
  • Digitalis glycosides -- increase the ability of the heart muscle to contract properly; prevent heart rhythm disturbances
  • Angiotensin receptor blockers (ARBs) such as losartan and candesartan which, like ACE inhibitors, reduce the workload of the heart; this class of drug is especially important for those who cannot tolerate ACE inhibitors
  • Beta-blockers -- this is particularly useful for those with a history of coronary artery disease
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Additional Information

American Heart Association (AHA)
7272 Greenville Ave.
Dallas, TX 75231
Toll-Free: (800) 242-8721
Fax: (214) 706-2139
http://www.americanheart.org/

National Heart, Lung and Blood Institute (NHLBI)
6701 Rockledge Dr.
P.O. Box 30105
Bethesda, MD 20824-0105
Phone: (301) 592-8573
http://www.nhlbi.nih.gov/

http://www.mayoclinic.com/

http://www.emedicinehealth.com/

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CAREGIVER TIPS & INFORMATION:
  • 10 Tips for Family Caregivers
  • Questions to Ask Your Healthcare Provider
  • How to Communicate with an Insurance Provider
  • Find a Doctor
  • Information on Seating & Mobility
  • Tips for Family Caregivers from Doctors
  • Care Management Techniques You Can Use
  • Compare Home Health Agencies in Your Area
  • Keep loved ones connected & updated!
  • Additional Resources

 


10 Tips for Family Caregivers.
1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
2. Watch out for signs of depression, and don't delay in getting professional help when you need it.
3. When people offer to help, accept the offer and suggest specific things that they can do.
4. Educate yourself about your loved one's condition and how to communicate effectively with doctors.
5. There's a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence.
6.Trust your instincts. Most of the time they'll lead you in the right direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Seek support from other caregivers. There is great strength in knowing you are not alone.
10. Stand up for your rights as a caregiver and a citizen.
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Tips for Family Caregivers from Doctors

  • Write questions down so you won’t forget them
  • Be clear about what you want to say to the doctor. Try not to ramble.
  • If you have lots of things to talk about, make a consultation appointment, so the doctor can allow enough time to meet with you in an unhurried way.
  • Educate yourself about your loved one’s disease or disability. With all the information on the Internet it is easier than ever before.
  • Learn the routine at your doctor’s office and/or the hospital so you can make the system work for you, not against you.
  • Recognize that not all questions have answers—especially those beginning with “why.”
  • Separate your anger and sense of impotence about not being able to help your loved one as much as you would like from your feeling about the doctor. Remember, you are both on the same side.
  • Appreciate what the doctor is doing to help and say thank you from time to time.
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Care Management Techniques You Can Use
Did you ever wish you could just pick up the phone and call someone who would take stock of your situation, help you access the right services, counsel you and your family to help resolve some of your differences, then monitor your progress with an eye toward channeling your energy and abilities as effectively as possible? If your answer is "yes," you're not alone. Having the help of a care coordinator (often called a care manager) could make all of our lives easier and less lonesome, and help us be more capable family caregivers. While most of us may not have access to a care coordinator, we can all learn how to think and act like one, thereby reaping numerous benefits for our loved ones and ourselves.

What Is Care Coordination?
Although every case is different, the care coordination approach usually involves:

  • Gathering information from healthcare providers;
  • An assessment of your care recipient and the home environment;
  • Research into available public and/or private services and resources to meet your loved one’s needs; and
  • Ongoing communication between all parties to keep information up-to-date and services appropriate and effective.

Unfortunately, an assessment of your abilities and needs is not necessarily a standard part of the process, but it should be. A complete view of the situation cannot be gained without one. An objective analysis of your health, emotional state, other commitments, etc., are key elements in determining how much you can and cannot do yourself, and what type of outside support is needed to ensure your loved one's health and safety.

Become Your Own Care Coordinator
By learning and applying at least some of the care coordination techniques and ideas that follow, you'll be in a much better position to develop an organized course of action that will, hopefully, make you feel more confident and in control - a goal well worth working toward.

Educate yourself on the nature of the disease or disability with which you're dealing. Reliable information is available from the health agency that deals with your loved one's condition and the National Institutes of Health. When using the Internet, stick with well-known medical sites. Understanding what is happening to your care recipient will provide you with the core knowledge you need to go forward. It will also make you a better advocate when talking with healthcare professionals.

Write down your observations of the present situation including:
  • Your loved one’s ability to function independently, both physically and mentally.
  • The availability of family and/or friends to form a support network to share the care.
  • The physical environment: Is it accessible or can it be adapted at reasonable cost?
  • Your other responsibilities — at work, at home, and in the community.
  • Your own health and physical abilities.
  • Your financial resources, available insurance, and existence of healthcare or end-of-life documents.

This assessment will help you come to a realistic view of the situation. It will let you know the questions to which you need answers. It can be a handy baseline for charting your caregiving journey and reminding you just how much you've learned along the way.

Hold a family conference. At least everyone in the immediate family should be told what's going on. A meeting can set the stage for divvying up responsibilities so that there are fewer misunderstandings down the road when lots of help may be needed. A member of the clergy, a professional care coordinator, or even a trusted friend can serve as an impartial moderator. A family meeting is a good way to let everyone know they can play a role, even if they are a thousand miles away. It can help you, the primary family caregiver, from bearing the brunt of all the work all of the time.

Keep good records of emergency numbers, doctors, daily medications, special diets, back-up people, and other pertinent information relating to your loved one's care. Update as necessary. This record will be invaluable if something happens to you, or if you need to make a trip to the ER. If you can maintain a computer-based record, that will make updating all that much easier and it might even allow you to provide the medical team with direct access to the information.

Join a support group, or find another caregiver with whom to converse. In addition to emotional support, you'll likely pick up practical tips as well. Professionals network with each other all the time to get emotional support and find answers to problems or situations they face. Why shouldn't family caregivers?

Start advance planning for difficult decisions that may lie ahead. It's never too early to discuss wills, advance directives, and powers of attorney, but there comes a time when it is too late. It is also vital that you and your loved one think through what to do if you should be incapacitated, or, worse, die first. It can happen.

Develop a care team to help out during emergencies, or over time if your situation is very difficult. In an ideal world there will be lots of people who want to help. More likely you'll be able to find one or two people to call on in an emergency or to help with small chores. The critical thing is to be willing to tell others what you need and to accept their help.

Establish a family regimen. When things are difficult to begin with, keeping a straightforward daily routine can be a stabilizer, especially for people who find change upsetting and confusing.

Approach some of your hardest caregiving duties like a professional. It's extraordinarily difficult to separate your family role from your caregiving role, to lock your emotions up in a box while you focus on practical chores and decisions. But it is not impossible to gain some distance some of the time. It requires an almost single-minded approach to getting the job at hand done as efficiently and effectively as possible. It takes practice, but is definitely worth the effort.

©National Family Caregivers Association | www.nfcacares.org | Phone: 800/896-3650

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Seating & Mobility - As a caregiver, you need to be very understanding to the individual's needs. This is a very hard time as they are being told they need to start living their life in a different manor than they had done so previously. It will be most beneficial to educate them, either with a professional, or through a support group. By becoming involved in different activities with others in the same condition, the individual will be able to make the transition much easier. As far as the actual device, you will want to make sure that the individual is fully capable of performing all the operations of the mobility device and can do so in a comfortable manner. Areas to pay close attention to include an adjustable backrest, a suspension system, a fore-and-aft track adjustment, an up-and-down seat adjustment, an armrest and/or footrest, and lumbar region support.

How do you care for your mobility device?

The most important areas that you need to pay attention to are referred to as the 3 B’s…Bad batteries, bent wheel rims and failed bearings. If you notice something that doesn’t seem right, but it isn’t all too annoying, you should still get it looked at right away. This could prevent a more severe accident from happening. So as the saying goes “it’s better to be safe than sorry”.

When a wheelchair is purchased, you will want to make sure that all the correct adjustments and modifications are made. This needs to be done by a professional and should take up to a couple of hours if done correctly. As long as the proper measures are taken initially, the work of maintaining the device will be substantially easier.
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Additional Resources

It's always wise to find out what your county and state have to offer in the way of services, even if you think you won't qualify for them. Check the blue pages of your phone book for the numbers, or go on line. Counties and states all have web sites. Type the name of your state or county and state into any major search engine i.e. Iowa, or Montgomery County, PA. Navigate from there to locate the Department of Health and Human Services and the specific office most relevant to your needs, such as office on disabilities, elder affairs, or maternal and child health.

Other good sources of information include your local hospital or clinic (social work department), area adult day centers, social service and faith-based agencies, and/or the local chapter of the health agency that focuses on your loved one's condition. It is by no means certain that any of these will offer caregiver support services, but they are good places to check, and they are good sources for information about services to directly support your loved one.

National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
800-896-3650
Web site: http://www.thefamilycaregiver.org
e-mail: info@thefamilycaregiver.org

The National Family Caregivers Association (NFCA) is a grassroots organization created to educate, support, empower, and advocate for the millions of Americans who care for chronically ill, aged, or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships, and different life stages to address the common needs and concerns of all family caregivers. NFCA serves as a public voice for family caregivers to the press, to Congress and the general public. NFCA offers publications, information, referral services, caregiver support, and advocacy.

Caregiver-Specific Web Sites
There are a variety of Web sites that offer information and support for family caregivers, in addition to those from specific organizations.

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