What is one thing you've learned from your Heart Failure journey that you want others to know?
Difficult situations often teach us a lot. Help others in the community by sharing some key takeaways from your Heart Failure journey.
Since I have been diagnosed with CHF in 2019 it has been an awakening. What I have learned is I must be careful how much Salt I eat. For me I had to eliminate Table Salt in all my Savory meals. And I have learned to read labels for the Sodium amount's . The next thing I have learned is living with Edema . My life has truly been altered because of CHF but not for any good.
once you stop adding salts. You do start noticing the salt in everything else. Funny how things like work. Amber B, RN(heart-failure.net team moderator) hey
That I can eat a pound of fruit and vegetables daily.
That I can still exercise and compete.
After my "event" last year where I put on 49 lbs of water, I am truly "just happy to be here". That choosing to do one really physically challenging thing a day can turn into 8 hours a week of exercise (even though I am not as strong as I was before I bloated up, I am getting there). When I was first diagnosed it was so bad that I could not even take out the trash without resting.
I've also learned to treat my condition like an energy issue. If I dont have good fuel I run extra rough. Like the old leaded gasoline that was so bad.
I guess the most valuable lesson I learned was to be grateful. I am a more patient and grateful person than I was before my diagnosis.
I believe gratitude is key, it really helps when your on this journey.
Kimberly (Heart-failure.net Team)wow!! You are so strong. In all meanings!! You found a way to found a silver lining in something most people wouldn’t see any positive. I am curious tho, before your competition and that 49lb of water gain had you had any heart issues at all or did this come out of nowhere?!? Continue fighting and being a positive beacon in the heart community! I appreciate you. Amber B, RN(heart-failure.net team moderator)
I have learned empathy and to be grateful through my journey with heart failure.
ive learned that empathy, gratitude and patience are a MUST in my journey. Because there is nothing fast in the medical world. It’s all hurry up and wait. I won’t lie, I still get super frustrated with how long thing take. But I try not to. Amber B, RN(heart-failure.net team moderator)
I have learned what it is like to have an expiration date hanging over you. I don’t like it. I’m gripped with fear at times and don’t understand why when a person gets a cancer diagnosis they are fawned all over by others but with a CHF diagnosis, which is progressive and fatal and has no cure, others just shrug it off. I’m not trying to be a Debbie downer but the truth of the matter is at least with cancer there is hope, doctors have all kinds of things in their bag of tricks to treat you with in most cases. With a diagnosis of heart failure they can only address the symptoms. I don’t know what medication I possibly in clinical trials these days but I have preserved ejection fraction and there is very little that can be done for it. When the FDA approved Entresto for HFpEF. my cardiologist put me on it but I was unable to tolerate it it dropped my blood pressure to as low as 72/66. I don’t have high blood pressure to begin with. I have a lifelong history of low blood pressure and also had bradycardia but now I take the diuretics and my heart rate has increased from the low 50’s to the high 80’s at rest. It completely changed my life, the fatigue is overwhelming 80% of the time, and I really can’t say that I like it. I was 57 when I was diagnosed and no one can figure out why. I was never overweight, I was
I can completely relate. I actually do not have HF. I am an RN who worked with heart patients for most of my career. But I have lupus. I was diagnosed at 26 after 10+ years of all these crazy symptoms that no one could diagnose or tell me why I was having them. Much like HF at first people seem to care but eventually they seem to forget that you’re sick. Or In my case they get tired of me cancelling plans or being sick so eventually we lose touch. But the number of times I’ve heard my so and so had lupus and they died is baffling. And a lot of our treatments are treating symptoms. I started a medication called Benlysta in 2013 it was new. It had only been put about 3 years. Before its release there had not been a new medication in over FIFTY YEARS!! Last year a new med was released specifically for those with lupus that has attacked the kidneys. So I feel your pain. And we have a right to be debbie downers every once in awhile. Living with lifelong chronic is not easy. Amber B, RN(heart-failure.net team moderator). way to find the good in things when there have been so many bad things in your life. It’s truly inspiring. I’ll be praying for you and all your family. Big hugs! Amber B, RN(heart-failure.net team moderator)
