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Living With Congestive Heart Failure: A Caregiver’s Perspective

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Congestive Heart Failure, also referred to as CHF or simply heart failure, is a serious medical condition which leaves the heart unable to supply enough blood to the rest of the body and in some cases, unable to properly fill with blood.

Affecting almost six million people in the United States alone, CHF is responsible for approximately 300,000 deaths annually. The number of people affected by CHF continues to rise with 400,000 new U.S. cases diagnosed each year. According to some estimates, 20 percent of CHF patients do not survive the first year after diagnosis and the five-year survivability rate is estimated to be 50 percent.

With such a hard prognosis, ongoing health care for CHF patients becomes vitally important. Quality healthcare may improve the long-term outcome, survivability, and quality of life. The role of family members, friends, and other caregivers can often make the difference in the outcome for CHF patients. I recently had the opportunity to sit down and visit with Kim Lindros about CHF. Kim is the owner of a successful editorial and content development company located in Austin, Texas. She’s also the sole caregiver for an adult sister who suffers from multiple physical and mental disabilities leaving her unable to care for herself.

Managing her sister’s health care recently became even more challenging when her sister was diagnosed with CHF. In an open interview, Kim shares her experience, insight, and practical tips regarding caring for someone with CHF.

Were you surprise by the diagnosis of CHF?
The diagnosis of CHF really came at us out of the blue. Since coming to live with me four years ago, my sister has lost 160 pounds and recently lost another 15 pounds. This was done by monitoring her diet and finding little ways that she could exercise. Her health has really improved and we all thought she was doing great so the diagnosis of CHF was really unexpected.

How did you first become aware that your sister had CHF?
I found out she had CHF from the emergency room staff. My sister wasn’t feeling well and laid down to rest. Within two hours, her breathing was labored and she was short of breath and wheezing. Her lungs sounded “watery” and it was very difficult for her to talk. All this happened very, very quickly and I took her to the emergency room where she was diagnosed.

In retrospect, were there any CHF warning signs that you now know to look for?
The shortness of breath, wheezing, and difficulty talking were all acute warning signs. She had been pretty tired for a few weeks prior. Other things that I look for now are swelling of the extremities (edema) with pitting, which means applying pressure leaves an indentation that persists, kind of like a memory foam mattress. If I see edema with pitting of the legs, ankles or calves and , I call the doctor immediately.

How has CHF changed your lives?
CHF changes everything. You constantly have to manage diet, exercise, fluid intake, weight, blood pressure, medications, drug interactions, doctors, pharmacy, diet – you name it and CHF impacts it.

What kinds of changes have you made to help your sister manager her CHF?
CHF definitely made our lives more complicated and it takes work to manage her CHF but it can be done. I’m really organized and so we have a system to track everything.

1. Liquid intake. Because of her CHF, my sister is only allowed 1500 mm of water a day – that’s less than two liters of water a day which isn’t a lot. Limiting her water is also complicated by the fact that she takes other medications and some of those medications make her thirsty, so managing the amount of liquid intake can problematic. We monitor her liquid intake by doing two things: first, I have a chart and we track the amount of liquid consumed each day. Secondly, we have a special cup that hold 500 mm. We fill it up in the morning and again in the evening. This account for two-thirds of the amount of liquid she’s allowed to have each day which makes it easier to track.

2. Weight. I monitor my sister’s weight daily now. If her weight is up more than three pounds in a 24 hour period, this could be an indication that she’s retaining fluid and that her heart is under stress. When I see a three pound weight gain, it’s time to call the doctor.

3. Salt. I have to micromanage her salt intake. My sister’s salt intake is limited to 2000 mg a day, which isn’t very much, especially when you get so much in your diet naturally through processed foods, all of which contain salt. Fortunately for me, my sister isn’t one to automatically reach for the salt shaker but I still put the salt shaker away and out of sight. I also have to track the salt content of everything she eats to make certain she doesn’t go over her daily limit.

4. Exercise. We’re located in Texas and summers are hot. For my sister, the heat seems to be a catalyst for CHF. We don’t walk in the heat - it’s just too strenuous for her. Also, other activities, even swimming in the pool are limited when it’s hot because I don’t want to risk her triggering another CHF episode. She walks early morning or in the house.

5. Dehydration. Believe it or not, the diuretics can cause CHF patients to lose too much fluid so you have to watch for dehydration. This is especially true in the summers when it’s hot.

6. Blood pressure. I monitor my sister’s blood pressure every day. If both numbers go up, it could be a sign that the heart is under stress. Sometimes, wild fluctuations may also indicate the heart is under stress.

What advice would you give to someone else who has CHF or who is caring for someone with CHF?
1. The most important thing is not to wait to seek medical treatment. CHF is very serious and even small delays might cause CHF to become life threatening. My sister can go from being fine to literally be at death’s door in less than two hours. And yet, in as little as four hours after treatment, she is remarkably better so quick treatment is essential. Don’t delay – just go to the emergency room right away!

2. If you don’t already have one, get a power of attorney for healthcare. Everyone that you deal with – the doctors, pharmacists, home health agencies, insurance company, the hospital – need to have a copy on file. You do not need to be arguing about your right to make decisions when in the middle of a CHF crises.

3. If you are happy with your doctors, don’t change. It really helps to see the same doctors each time because they have the full history regarding my sister’s health and you don’t have to educate a new doctor about health issues.

4. Keep a detailed list of all medications, the dosage, whether is generic or brand name, how often the medication is taken, and any known side effects or interactions. I keep all this information in a spreadsheet and make certain everyone who treats her has the information. In addition, each time a new medication is added, talk to the pharmacist about interactions. You get a list of known reactions when you pick up your prescription but it’s always better to speak to the pharmacist directly about interactions with other drugs. Also, make certain you do research on your own and then call them if you have any questions or concerns.

What is Heart Failure, National Heart Lung and Blood Institute, January 2010, http://www.nhlbi.nih.gov/health/dci/Diseases/Hf/HF_WhatIs.html

Congestive Heart Failure: 400,000 New Cases Every Year, Optimal Heart Health,


Reviewed August 1, 2011
by Michele Blackberg R.N.
Edited by Shannon Koehle

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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.


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