Community Shares

There is no wrong way to feel after getting the news of a heart failure diagnosis. Many members of the heart failure community had different emotional reactions after first finding out. To start a conversation about how it feels to learn you have heart failure, we reached to community members on our Facebook page. We asked members to answer: “How did you react emotionally to your diagnosis?” Nearly 200 community members shared, and here is what was shared. Shock Shock is the first stage of grief, and it is the first stage of processing hard news such as a medical diagnosis like heart failure. For those who had no early warning signs of heart failure, it makes sense that they would be shocked and completely surprised by the news. When we are in shock, we are numb and not fully feeling what is happening. It often takes time to process the news. “I was shocked.” “I felt a bit numb. I think I was trying to process the diagnosis because it did not seem real.” Denial Typically, the second stage of grief is denial. Denial often looks like not wanting to talk about the diagnosis or refusing to believe that it might be true. Denial can also look like continuing life as normal, as opposed to wanting to start making the changes suggested by the doctor. “I was in denial at first.” “I could not believe it, as most of my family died of cancer, never heart problems.” “I first found out in the ER. The doctor came in and asked if I knew that I was having a heart attack. I told him he had to be kidding!” Sadness Many community members shared that their first reaction was crying. The tears started when they were in the doctor’s office or shortly thereafter. It can be incredibly healthy to cry and release all that energy. Plus, it is completely normal to be sad when finding out that you now are facing heart failure. If you can, it helps to be able to cry with a partner, friend, or family member. Receiving comfort in the form of words, hugs, or something else can help soothe you during this stage. “I just started crying because I had been diagnosed 2 weeks before with ‘pneumonia.’ It was heart failure!” “I was sad and angry. I had this newborn, and now I was going to die without a transplant?” “I cried.” Fear As we move forward into the unknown, it is natural to be afraid. It is a whole new experience to find out what your life looks like now that you know you have heart failure. Do know that many people with heart failure can continue to enjoy many more years to come. However, it is OK to be afraid. For many people, the answer is being scared but moving on and moving forward anyway. “I was scared. I had an EF of less than 20. I had to wear a defibrillator vest for 6 months. It was a long, hard year.” “I was afraid I would not live long.” Thank you to our community members for sharing so vulnerably. We are grateful for your honesty, and we hope your words bring comfort to other members of the community. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] Heart failure affects everyone in slightly different ways. Some days may be better than others, but it is important to know that you are not alone in dealing with the impact of your diagnosis. To find out more about the different ways this diagnosis affects people, we reached out to followers of our Facebook page and asked community members: “What has been everyone’s strangest heart failure symptom?” More than 250 community members answered, each with their own unique list of symptoms. Here is what was shared. Fluid build-up Weight gain is one of the most common signs of heart failure. The weight gain is not fat, but rather fluid that is building up in the body. This is also known as edema, and it tends to happen in the stomach or in the feet. A doctor will often prescribe a diuretic to help flush all the extra fluid. “My stomach swells like I am pregnant when I am retaining fluid. My legs never swell. So weird! Even after losing 35 pounds, this still happens.” “My abdomen is full of fluid causing pain and discomfort.” “Stomach bloating. What causes it?” Pain between the shoulder blades People tend to associate heart attacks with pain in the chest, but a small percentage of people feel pain between their shoulder blades. For some, that pain can be intense. This symptom does tend to be more common among women with heart failure. “Horrible back pain between shoulders.” “The painful, painful pain all of a sudden, in the center of my back, it felt like someone hit me with a sledgehammer.” “Pain in the back between shoulders.” Inability to lie on your side It makes sense to feel your heart racing or other symptoms when lying on your left side. That is because this places your heart in a position where it is lower than the rest of your body. In other words, it is pumping blood “uphill,” which is harder for it to do. For some people, the heart is also working harder when the body is lying flat because it does not have gravity to help it work. “If I lay on my left side my heart speeds up.” “If I lay on my left side I break out in a sweat.” Vision problems People with heart failure are much more likely to have eye problems. One of the most common vision problems for someone with heart failure is having floaters, or seeing spots in your field of vision. “I see twinkling spots in my vision sometimes. My doctor always told me people usually see black spots. Mine look like little fireflies instead.” “Visual problems such as bolts of light, and seeing black dots/floaters.” Shortness of breath when bending over There is a term for the problem of feeling winded when bending over. Doctors call it bendopnea, and it can happen when someone leans forward and bends over, such as when picking something off the floor. “Every time I am bending the body while I am petting my cat, my breathing becomes shorter and I have chest pain.” Thank you to everyone who contributed to this story. We are always grateful for the amount of participation in this community. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],Living with heart failure often comes with feeling sluggish and tired. When we are facing that kind of low energy, vitamins and supplements can often give a boost to help us feel better. Certain heart failure medicines can also cause deficiencies, so supplements may also be a way to improve your body’s health and wellness. To find out more about the types of vitamins and supplements community members are taking and how they are working for them, we reach out to followers of our Facebook page. We asked members to tell us: “What supplements or vitamins do you currently take for your heart failure?” Nearly 80 people with heart failure responded. Here is what was said. Vitamin D Studies have shown that a lack of vitamin D is linked to an increased risk of cardiovascular disease, including heart failure. Vitamin D acts as a hormone and helps the body regulate blood sugar levels in the pancreas and blood pressure in the kidneys.1 Keep in mind that D is a fat-soluble vitamin. This means that if you take too much, it gets stored in the fat and can be problematic. However, many Americans do tend to be deficient in D. One reason is that many Americans are overweight – fat absorbs vitamin D, which removes it from circulation. We also spend so much time inside that we do not get enough vitamin D naturally from the sun. “D2.” “Along with my prescribed meds, I do take vitamin D.” “Vitamin D2 once per week and a multivitamin daily.” “Vitamin D. All you have to do is go out in the daytime, summer or winter, and the sun gives you vitamin D. Go out and walk around the block.” B vitamins Many people with heart failure are deficient in B vitamins – namely B1 (thiamine), B2 (riboflavin), and B6 (pyridoxine). It is common to take a B complex to give the body additional B vitamins to help with energy production. You can also increase your B vitamin intake by eating nutrient-rich foods like bananas, lentils, garbanzo beans, poultry, and fish.2 “B12 complex.” “B-complex.” “B12, niacin, and cod liver oil.” Potassium Many people in the heart failure community take potassium, mainly because the heart medicine they take leads to lower levels of potassium. However, if someone is taking an angiotensin-converting enzyme (ACE) inhibitor, angiotensin receptor blocker (ARB), or aldosterone antagonist, then they may already have high potassium levels. Before taking a potassium supplement, it is a good idea to talk with your doctor to see if this will be helpful to you or not.3 “Prescription potassium.” “I take 180 milligrams daily of potassium because I take Metolazone and Bumex, which deplete my potassium levels.” “Only potassium and aspirin.” Consult a doctor first Vitamins and supplements can often make up for the nutritional deficiencies of the modern diet. However, it is wise to check with a doctor to make sure any vitamins you are taking are not interfering with your heart medicines. “Do not take them just because someone else with the same disease takes them. Have your PCP do a blood panel before you waste money for vitamins you do not need.” “I think a good part to add to the question is: Why do you take those supplements? Does your body need them, did the doctor request you to, or is it just because you want to?” “I cannot take vitamins or supplements without my cardiac team’s approval. Along with my prescribed meds, I do take vitamin D.” Thank you to everyone who shared details about their vitamins and supplements. We are appreciative of all the feedback from the community. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] A heart failure diagnosis can affect anyone. It may happen at any age, regardless of race, class, physical ability, or family history. It can feel overwhelming and come as a shock to hear the news, “You have heart failure.” This is as true at 70 as it is at 20. To learn more about when our community members received the news of their condition, we turned to followers of our Facebook page. We asked you to tell us: “At what age were you diagnosed with heart failure?” Hundreds of community members responded. Here is what was shared. Heart failure in my 20s Several community members shared that they received their diagnosis when they were still in their 20s. For most people diagnosed at this age, heart failure came as a total shock. “I was 21. About 2 months before my 22nd birthday. Talk about growing up fast!” “Age 28, right after I gave birth to my son.” Diagnosed in my 30s Several community members shared that they received their diagnosis in their 30s. Many were warned by doctors that they would need big medical procedures like a heart transplant. Some even shared that they are defying the odds since they still do not need the transplant their doctors recommended. “I was 39 years old. They said I would need a heart transplant within 5 years. But I am still going at age 65. I spend a lot of time praying.” “I was 32, and I am now 60. They said I needed a heart transplant in 1992, and I am still rocking it with my original equipment.” “Just a few days ago. I was diagnosed on January 15th. I just had a newborn on the 9th of this month. And I am turning 30 on the 23rd of this month. Very big shocker.” “I was 27 when I started having heart failure symptoms but was not officially diagnosed until I was 38 years old.” Between the ages of 40 and 50 This seemed to be the most common answer in the community. For some, the diagnosis showed up after a heart attack. For others, a heart attack was not part of their story. “I was 46. My cardiologist said that I had the heart of an 80-year-old. That is scary.” “I was 49 and had just had a heart attack. The year was 1998. God is indeed good.” “I was 41 and really surprised that I was going to have heart problems at that age and from now on.” “It was after I was 48 and had a heart attack. I am 67 now.” “Early 40s. I am 71 in March. Have had my second pacemaker procedure in November. Now I feel OK.” Heart failure diagnosed between 50 and 60 A handful of community members shared that they did not quite make it to their 60s before the news dropped. The good news about finding out sooner rather than later is that this information allows someone to make lifestyle and health changes that can help. “I was 52 years young. I am now 60.” “At age 57, I was diagnosed with cardiomyopathy that resulted from rheumatic fever during childhood.” “I was 52. Never had a heart attack (thank God was diagnosed before it happened).” Receiving a diagnosis after age 60 The medical community states that heart failure is most likely to show up after the age of 65. Around age 60, body processes are starting to slow down. For many people, the heart is not able to support the body the way it could decades ago. Still, even though we expect our bodies to slow down with age, a heart failure diagnosis still often comes as a surprise. “At age 62, after a horrible year!” “At age 62! It has been different. I was shocked when I was told!” “At age 68. Now I am 72, but still feel new to this.” Thank you to everyone who shared about their heart failure diagnosis. We appreciate your willingness to be open with other community members. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],The holidays can be a challenging time for many people. When facing the coming season while living with heart failure, it may be tempting to focus on what you might be giving up – but there is still much to enjoy. To find out how the community makes the most of the holiday season, we reached out to followers of our Facebook page. We asked you to tell us: “What are some tips for getting through the holidays with a heart failure diagnosis?” More than 100 people living with heart failure responded. Here is what was shared. Self-care and setting boundaries One of the biggest tips on surviving the holidays is regularly checking in with yourself and assessing how you are feeling. If you are tired, it is okay to take a nap or excuse yourself from visiting with people or whatever activity is going on. Taking breaks may mean you miss out on some events, but you will feel better and more present during the activities you do say yes to. “Live your life. Do what you enjoy. If you need a nap, take it and do not feel guilty. If you cannot eat something because it is too salty, do not eat it. If you want to hug someone and they are in your safe bubble, then do it. If you cannot hug them because they are not, tell them you wish you could and that you love them. If you need to be alone, be alone. None of us has an expiration date on our foot, so just live your life!” “Give yourself ‘me’ time.” Smaller portions There are a lot of dietary restrictions when it comes to heart failure. If you follow the suggestions most of the time, you may find that a little indulgence on a holiday is okay. However, to avoid physical discomfort, community members shared that they fixed themselves smaller plates or ate a full meal but took a break halfway through to take a walk or stretch. “I have found that if I fix my plate, eat half, get up and walk around in the house for a little and then eat the rest, I do better.” “Try to make sure you do not overindulge with food, alcohol, etc.” “Have a little of everything you like, just smaller portions to avoid that bloated feeling which makes it harder to breathe.” “Partake in moderation because you are the one that has to face tomorrow’s consequences from today’s activities.” Each day is a blessing Many in the community shared that they find it helpful when they take the time to be grateful. This practice is especially helpful during the holidays, as it is all too easy to get caught up in the rush. When you can, pause and be grateful for another holiday, another holiday meal, a beautiful display of lights, or whatever you enjoy most about the season. This practice can help you slow down and enjoy the time with family and loved ones – and anything calming is always good for the heart. “I do not forget to count my blessings! Thanks to God, I am still alive! This has not been easy for me. I still have side effects, so I am still trying to get a stable medicine routine. Thanks for every prayer!” “You can count every day as a blessing.” Enjoy making new memories The holidays are often the times we remember when we look back, so it makes sense to do what you can to create new traditions. This could be doing a holiday craft project, taking a drive while sipping hot cocoa and looking at holiday lights, reading a beloved book together, or whatever feels significant. There is no wrong way to make memories with loved ones. “We have been creating our own family traditions so our kids can look back with nothing but loving memories and happiness.” “Make the most of every holiday with your loved ones.” Thank you to everyone who shared their holiday experiences and suggestions for this story. We appreciate you. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]

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