Finding Information and Support for Heart Failure
Last updated: March 2021
I remember back when I was first diagnosed with heart failure. I was shocked - in a jaw-dropping way - overwhelmed, and couldn't process information as quickly as I had been able to in the past. I had a new condition, new medications, and new rules to follow to make sure I successfully managed this illness. I quickly went on the hunt for information and found that I wasn't alone. In the 2020 Heart Failure In America survey conducted by Health Union, 84% of respondents stated that they also seek out resources from many sources.
Where do patients find information and support?
Not surprisingly, 70% of patients responded that they seek information from their healthcare provider (HCP). HCPs can come in many forms – I have many different ones. My HCP team consists of my primary care provider, cardiologist, electrophysiologist, allergist, registered dietician, and pharmacist. Depending on your condition, you may have one or more, or like me, many who care for you and provide both support and information.
66% of those surveyed said they are satisfied with the care they receive from their HCP. Five years ago, I would have been a part of the 34% that were not satisfied. Finding good care and someone you can trust takes time, like any relationship. Today I'm happy to report I am part of the 66%.
What information do heart failure patients look for?
According to the survey, 54% of heart failure patients seek information from the internet and medical websites, including heart failure specific websites.
Information sought can vary, according to the study. Most look to find information on their condition, how to manage the condition, including medications and treatments, diet and nutrition along with exercise tips.
Being diagnosed is overwhelming. I remember trying to listen and comprehend all the new information but I couldn't remember anything after leaving. While I am managing this better now, I am still continually looking for more information.
Remember to ask your HCP and care team before starting any new regime, lifestyle change, diet, or exercise. What works for some may not be appropriate for all – we are all different.
New medications and therapies?
If you watch TV these days, many commercials advertise the latest medication therapy for many ailments, including heart failure. New medications are often shown in commercials prompting us to ask our care team and/or visit the manufacturer's site. 28% of respondents do activity look for new heart failure treatments. Respondents indicated that they do visit the website of the drug manufacturer to find information.
I have found handy information on new medications on the manufacturer's website. New medicines can be costly, and most manufacturers offer coupons and savings programs. Some manufacturers offer support in terms of information and support groups. I am contacted monthly by one manufacturer to continue educating me and to answer any questions as part of their support program.
Additionally, many patients go online to determine how other patients manage their condition with a new medication. My cardiologist was surprised when I asked, "Can I go on drug XYZ? It's working wonders for my heart failure friends". "Your heart failure friends?". She was surprised I had a whole support group on Facebook not only to provide their experiences with different treatment options. Sometimes patient peers are the best source of information.
If you are reading this, know you have found an excellent resource for heart failure, which offers input from HCPs, patients, and caregivers. Make sure to follow Heart-failure.net for more information.
Besides heart failure, do you have any other chronic medical conditions?
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