New Member
Hello. My name is Julie and I am 62 years old and was diagnose with Heart Failure with preserved ejection fraction 4 1/2 years ago. It was shocking because I did not have any risk factors. Not overweight, no diabetes, no HBP or family history, no coronary artery disease and never was a drinker. I’m afraid. I’m now at stage where I get breathless, sometimes at rest. I’m married with 2 adult children. Like everybody else I dislike all the restrictions. The diuretics have ruined my bladder control and make it so I can’t leave the house unless I want to skip a dose. I’m not ready to leave this world. I have 2 puppies and a Main Coon cat that need me. Heart failure is worse than a cancer diagnosis I think because there is no chance for a cure which gives very little hope. My cardiologist tried Entresto with me but my BP crashed so it was a failure drug. I’m envious of those that can take it. I think you get the idea. I’m happy, but I’m not happy about the unknown in the future. I read once that the only certainty with CHF is that it’s progressive and you will die so get your affairs in order. I didn’t read anymore of that publication.
Thank you for your post and for sharing your personal experience with us. Sorry that you are having to deal with heart failure despite having no previous risk factors. I am with you about not reading publications about the progression of this disease and about dying. I have had doctors give many predictions for how long my patients have to live, and i have seen many of these same patients live many years beyond those predictions. And I hear you about dealing with the restrictions of heart failure. It certainly can be challenging. Rest assured that you are in good company here in this community, as others here are going through similar experiences. If you have any questions, or even if you just need support, we are here for you. Here's wishing you all the best. John. heart-failure.net community moderator.
Julie, To give you some hope, your doctor may recommend heart transplant for you or an LAVD if appropriate. I am on Entresto but only 1/2 tab twice per day lowest dose because of my low BP as well. Hopefully you are on other medications to keep you alive such as Metoprolol or ? I am getting an LVAD or on the heart transplant list here in another month or so. In my case it is my left ventricle failure. I too have low EF (20%). My HF is due to heredity and long family history of heart issues so I was surprised at my diagnosis but had prinzmetals for many years causing many heart attacks. I am not ready to go.....I have a husband and two pups that Love and need me. I am 66 years young but feel like I am in my nineties. I use a wheelchair now for outings and can barely do any housework but I force myself to get up a long with the help of my incentives (hubby and pups) to get some things done. I wish you the best Julie and to always have hope.
