Advice for Women Experiencing Heart Failure

The women who participated in this study had many words of wisdom and advice for those facing a similar diagnosis. They frequently noted the power of community and the importance of women connecting with others living with heart failure. They also encouraged women to advocate for themselves and for other women with heart disease by getting involved in HF research projects for women. Becoming knowledgeable about your own condition, symptoms, and medications enables and empowers women to be strong self-advocates and respected as members of their own healthcare team. But women also recommended building a trusted support team around you to advocate on your behalf when needed. Finally, women with HF encouraged others to be persistent and insistent when navigating the health system and dealing with healthcare providers – to ensure that questions are answered, and you get the care you want and need.

 

Peer Support Groups

Finding and sharing experiences with other women with heart failure, as well as locating a community of support was important for connection. Talking to someone who truly understood, helped some women realize that they were not alone and that others were facing the same challenges. When asked about advice for other women living with heart failure, Sharon2 describes the support from others as a solace:

“Well, I think it’s find a community. I think there is a lot of support and solace to be found by being in the community of other heart patients. I think it helps you appreciate your experience, put it in perspective and understand it. I think its one of the most important things.”

For others, connecting with someone with a similar experience was a lifeline and made all the difference in their journey. Management of heart failure includes many medical interventions and devices that are not common and so being able to connect with other women makes people feel less alone.  This was especially true for younger heart failure patients who often struggled given that many of the supports, materials and services were geared towards patients who are much older. Naomi describes how speaking to another women living with a Left Ventricular Assist Device (LVAD) [an implanted device that does the work of their left ventricle] gave her hope that living a good life with heart failure was possible.

While connecting with an individual who shares a similar experience was important, other participants spoke about the importance of connecting with support groups. During COVID, online resources allowed connection with the health care team, support groups and other patients, offering a range of supports.

 

Building Support Around You

In addition to peer supports, many women highlighted the need to build strong support networks. Do not be shy to ask for help was common advice and to enlist the practical support of family and friends to clean homes, grocery shopping, do laundry or making dinners.

Many women highlighted the value of having a second person accompanying them for medical appointments or procedures to listen and take notes, ask questions, or advocate on a patient’s behalf. Lillian and Deb said taking someone along with you to take notes helps because sometimes you can’t process everything.

Several women spoke about developing a trusted professional network including family physicians, nurses, social workers, dietitians, and psychologists that can support women with HF who require help – whether it is navigating the system, getting material and mental health support or learning how to manage their condition better. Pushing for this is particularly important for women with fewer family and friends available to help. As Lillian recommends:

“So I think finding some supports for yourself that it’s OK, if you can afford it to get a therapist like. And if you can’t, trying to push the healthcare providers to get you a social worker or get something for you. I think from what I understand, if you’re in an academic centre, then there’s clinics that have like psychologists and social workers and nurses and dieticians and whatever, but that’s not the case in the smaller places.”

 

Advocate

The need to advocate for yourself or to have a support person with you to advocate on your behalf was noted by several participants. Women felt that if they did not speak up, ask questions or push to be heard, they would be shuffled to the side or fall through the cracks. Advocacy was often required as many women shared experiences where they did not feel that they were heard, taken seriously or had their concerns appropriately addressed.

Amanda reflects on the outcomes had she and her family not pushed for diagnosis and treatment options “Yeah, like I said, if it wasn’t for that strong advocation and that strong push to get things done, I would have been in heart failure, well honestly, I probably wouldn’t have been in heart failure for very long because I wouldn’t have survived, right?”

Deb also provides strong words of wisdom for women who present at the ER multiple times and are ignored. She encourages others to take someone to the hospital who can advocate for them on their behalf: “I think the number one takeaway for me from this experience, aside from the obvious is that: A. Never go to the hospital more than once by yourself, B. All I had to do was stand up for myself. All I had to do was sit down and say I’m not leaving.”

Tied closely to advocating for yourself was the notion to trust your body. Women reported feeling at times as if their concerns were dismissed leading to self doubt and thinking that they may be exaggerating their symptoms. Maya talked about how following her instincts that something was wrong saved her life: “I would say definitely advocate for yourself as much as possible. If you think something is wrong trust yourself, trust your body and then find someone who will listen to you. That’s what I think saved my life in the end.”

Of particular concern for women with strong family histories of heart disease and heart failure was getting tested for hereditary causes. Getting tested for these types of heart disease required extra effort and advocacy as some providers were described as resistant to offering this type of testing.

 

Become Knowledgeable About Your Condition

Many women linked the ability to self-advocate, with knowing how and where to seek information, learning and becoming knowledgeable about heart disease and heart failure. They encouraged others living with heart disease to seek out information from reliable sources (not Google) and to learn as much as possible about your own condition. Knowing your own symptoms and how to monitor them regularly allows you to know when to seek help and gives providers information to act on. Lori knows that her unique sign is a distended jugular vein, as she said “so I know what to look for” and allows her to be “a part of her own healthcare, ways for them to see if the heart failure is getting worse and when to know to get treatment”

 

Get Involved in Research and Education

Finally, several women strongly encouraged others to volunteer for research projects, advocacy, peer support and/or educational efforts. They encouraged participation to enhance personal learning and to contribute to better care and treatment for themselves and their families, and others who might encounter HF in the future. In turn, their improved knowledge, connections, and understanding could make them better self-advocates and improve their outlook on life. Debbie suggests “that people volunteer for various studies, clinical studies that are going on because it helps us learn, it teaches, it’s a teaching thing. But its also one that could be a resolution down the line. It could actually help you or your children or your grandchildren down the line.”

 

Look After Yourself

Many of the women we spoke with reiterated the importance of putting yourself and your health first. Practice good self-care such as following dietary advice, getting exercise and follow up on your medical care – for instance, see your doctor, follow up on tests, follow their advice, and take medications as directed. An important part of looking after yourself involves paying attention to your mental health – managing mood, thinking positively, having hope.