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  1. I read all kinds of information regarding heart failure from many many websites. Most are from Medical information websites. Most of the i nformation is just the basics and all websites essentially provide the same information. I want to know more about the “real life” symptoms of heart failure and not just the medical school “text book” information. I want to know the about obscure symptoms that so many are affected by such as, in my case, why I feel like I have the flu all the time, minus the fever, every single day. Why am I so exhausted even though my Stage 3 Congestive Heart Failure is stable. Why does my belly and intestines feel super bloated and swollen some days even though I am on Loop diuretics. My ankles aren’t swollen however. There are no answers to obscure questions like these anywhere online. There needs to be a platform for people that still have odd, but semi-common symptoms for those who have heart failure “AND” are being treated for it. Most online information I see when asking about the above questions are answers that are geared for those who are not yet being treated OR even diagnosed with heart failure. It’s incredibly frustrating.

    1. Hi Susan, we hear you and understand that you are dealing with many of the chronic symptoms of heart failure such as fatigue and swelling. These symptoms can persist (albeit sometimes to a lesser degree) even while under treatment for heart failure. Have you mentioned your concerns to your doctor? Perhaps they can alter some medications in order to help with your symptoms? What do you think? -Lauren (team member)

  2. I'm interested in what I can do at home to prevent my heart failure getting worse.
    What kind of exercise? What kind of foods? Etc.

    1. Can you link me to Zoom-able HF support Groups.
      And/or in-person SGs in Greater Boston?

      Thanks either way, Len

    2. Hi there! I wanted to chime in because I have asked my heart failure doctor the same question, and he gave me an interesting answer. He replied that exercise is important for your heart and your whole body, because the more in shape the rest of your body is the less oxygen it will need, and you will be able to do more with less. Meaning, you will have more functionality with less oxygen, and heart failure basically means that your heart cannot pump out oxygen rich blood the way it should so all of your muscle, organs, skin, etc. get less. So, in other words, his response was to make sure the rest of me was in as good of shape as I could minimize the impact that heart failure had on me. Sorry that I can't give you the magic sauce to stopping the progression of heart failure, but if it helps you maintain having a life than maybe that is what is most important? I hope this helps and feel free to bring up with your medical team! Morgan ( Moderator)

  3. Thank You !!!

    1. I am glad that you found the information helpful. Are you able to ask your medical team about your long term prognosis and if there is anything you can do? Do you see your PCP, cardiologist and/or advanced heart failure doctor? Morgan ( Moderator)

  4. My Elderly mom is having Congestive Heart Failure for last 5 years and developed other complications like CKD and actute Liver failure. Doctors have indicated that we need to do end of life care at home. Would like to understand what to expect?

    1. thank you so much John!

    2. So glad that we can be helpful! Please let us know should you need anything! All the best, Lauren (team member)

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