Stiff Heart - diastolic heart failure

I also have stiff heart ,10% of left side of heart doesnt pump. Its scary

Hi @annierae, wondering how your appointment went and what the result were. How did it go?

Hi Amanda, thank you so much for asking! It's been a truly long process. But I'll make it short. On Tuesday (the 18th, Dr. Timimi called. He said it was a triage call. Wonderful man, and I appreciate him so much! In the end he said he was referring me to the Cardiac Amyloid Clinic, and would ask them to put me down for the first available. I haven't heard anything since then, but I did get a letter of authorization to sign, and sent that back, so they should get it in a few days. Other than that I don't have any news, because I still don't have an appointment, lol. Sorry. ~annierae

Diastolic dysfunction is a pretty common diagnosis, and amyloidosis is fairly rare. While I don't disagree with seeking treatment at a a reputable heart hospital (Mayo in particular is rated among the best in the world), this issue can be caused by so many different conditions, many of which are treatable with medication. While they can't "cure" the diastolic dysfunction since it is caused by the anatomy of the heart, they have many drugs which can treat the symptoms and improve the filling of the heart. Please do seek treatment at good heart center, but please do not assume that what you have cannot be treated or that your prognosis is terribly poor.

People who have Hypertrophic Cardiomyopathy as I do almost all have some degree of diastolic dysfunction, and most of them live a normal lifespan without major disability.

Hello @annierae,

How wonderful that you can be seen at Mayo's Cardiac Amyloid Clinic. I've heard great things about this department.

Will you post again after your appointment is scheduled? Looking forward to hearing from you again.

Teresa, yes. I do promise to post again after it's scheduled. Thank you for your interest!

@annierae I'm pleased! I'm looking forward to hearing from you again. I'm very interested in what you learn about Cardiac Amyloid problems. The one great thing about Mayo Connect is how we all learn from each other.

Hi Teresa! Thank you! You know, I'm still not even sure that amyloidosis is what I have, since the tests for diagnosis were not done here (Cardiac MRI, PET scan and Heart Biopsy). However, if it's not, I'm sure they'll tell me and send me where I need to go. But if it is, and if it's familial, my kids will need to know so they can be prepared. Knowledge, to me, is power.

Hi Teresa! Thank you! You know, I'm still not even sure that amyloidosis is what I have, since the tests for diagnosis were not done here (Cardiac MRI, PET scan and Heart Biopsy). However, if it's not, I'm sure they'll tell me and send me where I need to go. But if it is, and if it's familial, my kids will need to know so they can be prepared. Knowledge, to me, is power.