I need to vent. I saw my Internist last month and I explained I was having a real problem with shortness of breath. She advised me, according to my Echocardiogram 3 years ago, I had Diastolic Dysfunction on the left side of my heart. My cardiologist had failed to mention this to me and had advised that I had a healthy heart, no problems. The Cardiologist was also the doc that did not believe the Lupus diagnosis. The Internist then ran a recent Echo. It showed I now also have left Ventricular Cardiomyopathy. I am really upset with the cardio doc and the diagnosis. I feel the Lupus may have contributed to the problem but have yet to get an explanation of how to deal with it. FRUSTRATED!!!
I'm sorry, PoohP, that your cardiologist STINKS! You should have been informed about your heart condition! And she didn't believe in your lupus, either. So she was basically treating you as a hysterical woman who was not to be listened to. How do doctors like this continue to practice?
You could try to write up your symptoms then show them to your doctor and ask for help in managing them. If you can't get him or her to do that then maybe the nurse at their practice? Or another of your doctors? If not them, then maybe you could contact SHINE - an organization primarily for the elderly but they help the disabled as well. They might have a social worker or be able to hook you up with one. Social workers oftentimes work as patient advocates, so that might be enough for you to get info from your doctor through them. It really is quite important that you know what you have so you can get appropriate treatment but I'm not sure if your doctor knows what you have or how to treat it.
Thinking of you. Best Wishes Kaz xx
This post hit quite close to home. I have been diagnosed with a cardiac insufficiency in the aortic valve. The valve was letting about 60% of the blood it pumped into the heat leak back down past the valve after every pump. I ended up having to get the valve replaced. My cardiologist and my rheumatologist (main lupus doc) feel inflammation from lupus caused this to happen. I’m not sure if this helps you or not but it’s part of my story.
It amazes me that a non rheumatologist feels it’s okay to wave away another specialist’s diagnosis like that. As to failing to tell you the diagnosis, I think that kind of failure is actionable. I would send a letter of complaint to the AMA. It’s gross negligence, although it’s odd that the rheumy knows and didn’t talk to you after ordering the test. You need a better heart specialist!!! I’m sorry that you have this, though it’s good that you know. It must be scary. Can they do anything aboout it?
I agree with Jane Doctors aren't going to make an effort to get better until there is a consequence. Not telling you about a potentially damaging heart problem is I would think actionable. I would certainly contact the AMA God Bless Be well Julie
Jane S. said:
It amazes me that a non rheumatologist feels it's okay to wave away another specialist's diagnosis like that. As to failing to tell you the diagnosis, I think that kind of failure is actionable. I would send a letter of complaint to the AMA. It's gross negligence, although it's odd that the rheumy knows and didn't talk to you after ordering the test. You need a better heart specialist!!! I'm sorry that you have this, though it's good that you know. It must be scary. Can they do anything aboout it?