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I just had my appointment yesterday. I have 46 pounds of fluid that
has been accumulating largely over the past two years. I have been hospitalized twice this year with MRSA. I run a low grade fever h every day. The fluid is everywhere. My belly looks like I am pregnant. I have been taking 2 Bumex a day with potassium. Yesterday my told me that I have congestive heart failure and is referring me to a cardiologist for a 3D Echo. He has also added spironolactone 25 mg. He said he had to lower by prednisone to 10 mg, whereas, we have to get the fluid out. I am only 41 years old and was diagnosed two years ago in April. But unfortunately my doctor has stated that I have had lupus for many years untreated and now he cannot get it under control. Is there anyone out there with Congestive Heart Failure?

Thank you for your input.
 

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Hi Sylvia,

I have congestive heart failure. Actually I found out I had it before I was dxed with SLE.

I am on coreg (betta blocker) to help my heart. Makes it so it doesn't have to work so hard. I have had several echos, and several MUGGA scans.
With those tests you will be able to find out your ejection fraction. That is how well your heart pumps.

When is your appointment with the cardiogist?
Take care,
Lyn
 

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Brenda
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I have congestive heart failure along with pulmonary hypertension. I'm on cardizem la and lasix when I need a boost (along with a host of other meds, but those are the primary ones for the CHF). I also use oxygen which takes a lot of stress off the heart. I know it's scarey, but when they get you on some good meds it will stay under control most of the time. For me, the worst time is summer for swelling and retaining water. The echo will give lots of info and the cardiologist is a good starting place. I've been through all this so if you need someone to talk to, I'm more than happy to share anything I can with you.
 

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I suspect I'm headed for congestive heart failure. I'm on lasix - 60 mg a day to keep the swelling down and I have a huge stomach area. And my breathing percentage isn't as good as it should be. Also I'm on Atenolol for the heart rate. Don't have anything to add, just thought I'd throw it in.
 

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A bit of cheerful news from an MD. "It is called cardiac oedema if you live; congestive heart failure if you don't." Somehow that made me feel better.
When I have an anaphylactic episode it always leads to cardio-pulmonary oedema and I'm still above ground so there is hope for you too.
All the best,
Douglas+
 
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