Stiff Heart - diastolic heart failure

Hi Teresa @hopeful33250
Yes, it's scheduled for the 21st, 22nd and 23rd. A little more than a week away. I'm trying to prepare for the trip this week. Thanks so much for asking! I'll post again when it's finished and I know a little more. ~Annierae

I do hope that you find some answers @annierae!

Do many of you find that cardiologists don't like to share most information about your condition? I was just told by this cardiologist, he doesn't care about my low diastolic numbers. Does anyone else suffer from the effects of autonomic dysfunction on your heart?

Hello @barbbie,

I see by your post that you have a heart problem related to autonomic dysfunction. Is this correct?

I can understand that you are concerned if your cardiologist doesn't want to talk with you about your concerns. As patients, we have a right to understand our health concerns and to have them explained to us.

Do you generally have another person with you when you meet with your doctor? This might be helpful to have another person ask questions and even write down answers.

At your next appointment, I suggest that you bring a list of your questions/concerns. If it is allowed, also bring another person with you to listen and take notes on what the doctor has to say.

Also, often doctors have Nurse Practitioners or Physician Assistants in their office who will spend a lot of time with patients explaining their conditions and helping them to understand the situation better.

Will you give this a try?

I have recently changed cardiologists. My excellent pain management doctor recommended this new one. I have seen him twice and will see him again this coming week for some test results. He asked me why I was changing and I told him straight out that while I liked the personality of the other doctor, he never gave me sufficient information. He rose to the occasion. He sent me to the arrhythmia specialist to see about getting a linq monitor implanted. He was the one who was dismissive. I will have the monitor implanted this coming week and will not be relying on him for my information. I go alone and always have. I usually go with a list of items to go over. I do not expect to have him do what the previous doctor did which was when I asked about the shortness of breath that I have, he told me it wasn't heart related. I asked him about the edema, it wasn't heart related. I told another of my doctors what he said and he ordered a lung study which turned out fine. Just as a side - this office does not have PAs or NPs. I am encouraged about this new doc. He and my pain management doc grew up as best friends and another doc he recommended is superb. I was an educator and believe in being educated about health situations so I do look up things. I go in somewhat prepared. Just frustrated with this guy who put me off and wondered how many others find the same thing.

It is nice that you seek our first hand experience but please do not act on what we say. We are all amateurs and you should trust the professionals. Still you can hold them accountable by asking informed questions and being prepared for every appointment.
Best always,
s!

Your frustration is understandable under these circumstances, @barbbie. I hope that you continue to post about how you are doing. I look forward to hearing from you again.

Will you post again after the monitor is implanted?

The implant went well. It seems to be a rather simple thing to get recorded and studied. I had a tough day Saturday with SVT, SOB, and mid thoracic back pain that was more intense than ever before. I go to the Wound center for a check up on Tuesday. I have a nuclear stress test scheduled for next week. It has been 12 years since I have had testing done. Am still hopeful of finding out the cause of my SOB and edema.

Hi @barbbie, I'm glad that you posted an update after the implant procedure. I'm so happy that it went well. I am sorry to hear of the back pain though. Were you told that this might be a result of the implant?

I hope your nuclear testing next week goes well and that you get some answers to the edema and SOB. Looking forward to hearing from you again.

Will you post after your upcoming test?

Hello @annierae,

I've been thinking about you and the appointments that were scheduled at Mayo at the end of October. I hope that the appointments were well. Did you learn anything new about your heart problem?