Newly dx with stiff heart

Thanks for responding.

Do you also have bronchiectasis or MAC? This is a group of patients with lung issues and may not be able to lend much advice for stiff heart, but provide valuable info on bronchiectasis. I did see a Mayo group for heart and blood issues.

Is your stiff heart from Amyloidosis, the most common cause, I think? Mayo has an amyloidosis clinic and they might suggest a support group. There are also Facebook amyloidosis groups, too.
There are also other amyloidosis clinic around the country. If it’s caused by hemochromatosis or another less common cause, I imagine a general heart group might be able to connect you with others.

Good luck to you. Others might chime in if they know of resources.

Boston University is one of the top research facilities in the world for all forms of amyloidosis. My husband was treated by them after MD Anderson botched his care. They have a whole team. Mayo is also excellent. It depends on which is closer to you. At Boston, they have you come for a day of testing. The next day you meet with your specialists. They send you home and call you at the end of the week for a full discussion of all the test results and plan of action. They also are willing to work with your local doctors, as many are not familiar with amyloidosis. Go to the best and get proper treatment. When the heart is affected, and you get proper treatment, some of the amyloid deposits regress. Don’t delay treatment. Best wishes to you. They have come a long way in treating amyloidosis!

Thanks for info. I sent a message to my heart doctor at the Presbyterian
hospital where I had my heart scan.
He initially stated it was stiff heart.
When I did some internet searches I find different and confusing results,
Another call to my heart doctor said no when I had was heart failure with
preserved ejection fraction, and that it was designated as HFpEF. he
described it to me as the left ventricle in the heart has thickened walls
in and that when it gets ready to pump, there’s not enough blood in that
ventricle to fill and pump through the rest of the heart. He said the only
medicine was the spironolactone, and there may be some help with the SGLT2.
I had my GP prescribe Farxiga
Which is very very expensive even with Medicare/Aetna.
I am also diabetic and have high blood pressure. Doc also advised me to
exercise to lose weight and get heart rate up
It currently stays around 35.
Does this sound like what your husband had?
Thanks so much for your help. Have a blessed day Pat.

A bit over 20 years ago, I called a leading doc in that amyloidosis clinic at BU and he volunteered to look at husband’s tests. Long story…but a local doc had underestimated his EF and amyloidosis was a risk in hubby’s type of cancer. Hubby didn’t have it. Doc didn’t charge and was exceptionally kind.

This group might be helpful with questions about your heart failure.
https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/
Good luck to you.

My husband’s heart was not affected by amyloid. His was localized to the kidneys. His kidney function was good when MD Anderson began treatment. They mishandled him during the stem cell transplant. Amyloidosis is tricky, and MD Anderson, although claiming at the time that “they did everything”, made many errors, we later discovered at Boston. He is now on dialysis. Doing research is critical. We were sent to MD Anderson by his doctor and allowed the reputation of the hospital to sway us into having treatment there.
The team at Boston was very kind and always approachable. An amazing place. I hope that you get answers to your questions and are able to get the best care.