Stiff Heart - diastolic heart failure

Hello, Teresa @hopeful33250

I did get some really good news regarding the amyloidosis--the scans and aspiration tests were all negative for amyloidosis. I still do have some diastolic heart failure and a degree of kidney failure. The scan showed atelectasis in my lungs, and my right diaphragm was elevated, however, that may be due to having right-sided polio. I'm supposed to go to hospital for a test to see if my right diaphragm moves at all during fluoroscopy or whether it's completely paralyzed. My follow up visit here with the pulmonologist doesn't take place until next June, and they haven't called me with a date for the test. So from the lung standpoint I'm still a little in limbo. But the cardiologist in Mayo seemed to think my lungs weren't the major cause of my shortness of breath.

I meant to write but wasn't really sure what to tell you. Anyway, this is what I know, and what I still don't know.

The news about NOT having amyloidosis, however was great. And it was the main reason I went up there, to make sure my children didn't have to worry about it. I will also see a new cardiologist down here, since I lack confidence in the previous one who did the cath and gave me a diagnosis that hadn't been tested for.

Thank you so much for asking.

Annie

Hi @annierae, Thank you so much for the update. I too, am glad that you don't have to be concerned with the diagnosis of amyloidosis, both for you and your children. I'll be interested in hearing what the doctors find out about the diaphragm. I look forward to hearing from you again.

Will you post again when you know more?

nothing can be done, I have the same and that has caused me to study the medical literature. Absent a miracle, you, like me, have no way out. we will both be dead in 5 years at best , or more probably, within one year; possibly tonight, r, Booth

Hello @barbbie,

When you last posted you were scheduled to have some nuclear testing done, I hope that went well and that you found some answers to the edema and shortness of breath.

I would enjoy hearing from you again. When you have time, will you post an update?

Hello @rbb1938,

I see that you are relatively new to Connect and this is just your second post. As I read your post, I see that you have done some research on heart conditions. Since you feel that you only have a short time to live, I'm wondering if you have some other heart-related problems?

This discussion group is about diastolic heart failure, stiff heart. I have had diastolic dysfunction (most likely due to aortic valve dysfunction) for nearly 20 years now and with the right meds, it is under control to a certain extent. My exercise and activity level is not what it used to be, but I'm content with what I can do.

If you care to share more about your heart health that might help put your comments in perspective. If you are comfortable sharing more, will you post again?

I see my doctor next week. I had some difficulty with the test but it wasn't because of my heart. No one was able to identify the source of my pain. I just have a very unique house that I am occupying on a temporary basis. Looking forward to my future.

I appreciate the update,@barbbie. I'll look forward to hearing from you again.

Will you post an update when you are able?

I have been diagnosed with stiff heart syndrome at age 62. Is there any news on clinical trials for new medicines for stiff heart syndrome?

Hello @susie7 and welcome to Mayo Clinic Connect. I wanted to share a link to clinical trials at Mayo Clinic so you can review them as you wish.

-Mayo Clinic: Clinical Trials Heart Disease
https://www.mayo.edu/research/clinical-trials/diseases-conditions/heart-disease
Have you discussed any clinical trials with your Cardiologist?

SEE A CARDIOLGIST, YOU HAVE RIGHT SIDE HEART FAILURE