Hello I'm new here. I also have "stiff heart". I have had the symptoms of heart failure on and off for several years & take bp, heart arrythrmia medications & Lasix. I'm wondering about my prognosis. I just talked with my cardiologist & he said he believes mine is just a "stiffness" issue since I've had the same symptoms for years. I have had the heart caths & the echoes. Cynaburst's post above is the first time that I've read that it may not always progress. Is this information up to date? If so, that may be so in my case. I can only hope as I'm wondering about my prognosis. Some scary info out on internet. Also, once one experiences the symptoms of diastolic heart failure is it still possible to reverse some of the stiffness? thank you.

I think that the root cause of your diastolic heart failure would be important to know. In my diagnosis, hypertrophic cardiomyopathy, there is not automatically progression. Everyone is different and follows their own course.

It is best to discuss your own situation with your doctor. The information you read on the internet is very general. No one can know what your situation is without having trained as a cardiologist and having seen your test results and examined you. As far as I know, the stiffness is not reversible but medications can treat it and help the heart relax so it can fill better.

In my case, my "stiff heart" is apparently the result of cardiac amyloidosis. The V and A walls are stiff and enlarged. My QRS on an ECG are showing a sawtooth pattern less than .5 mv. I know I am a candidate for sudden death if the amyloid fibrils get into the sensori-command nerves between the brain and heart. And my valves are trying to work, but the macular tissue coverings on the valves is causing them to misfire frequently with PVCs. Every valve of every kind in my body, it seems, has been invaded by fibrils and macular covering. Urinary, larynx, stomach, cardiac, kidney, everything. So have your SERUM, plasma and urine checked for misfolded protein, especially if you are over 50.

@c410djh Hi. I have had some more thoughts about the possibilities that what you actually have is some form of Amyloidosis. You can find a lot of info at Mayoclinic.org, and Amyloidosis.org. But there are some symptoms that would give you a heads up before you push on the hematologist about it too much. Skin patches that look like little plowed fields, with furrows running two or three ways, maybe up to 2 or 3 inches each way. Foam or bubbles in your urine in the toilet that last for more than 3-4 seconds, especially if it gets to and inch or so deep. purple-black-red patches on your eyelids or toes or otherwise on your face. Little purple-gray spots on your skin, such as your arms, legs, etc. Rheumatoid and/or psoriatic arthritis. Alternating diarrhea and constipation every few hours or days. Red edges on your eyelids. Puffy eyelids. Dark belts around your lower legs. Enlarged belly muscle, from your navel to your breastbone. Difficulty reading because your eyes will not focus properly, and bifocals do not help. Multiple cancers in your various systems. Carpal tunnel or tarpal tunnel history, especially both. Peripheral neuropathy. ECG QRS showing sawtooth less than 0.5 mv on the squeeze and refill cycle. AFib. Tachycardia. Well, That's enough. If you have more than two or three of these, have your doc arrange a Bindings Serum Lite Chain Assay, a 24-hour urine/protein assessment, and a mass spectrometry. Sometimes a Fat Bad or Labial biopsy. But When you get this far, the lab that does the work MUST be a highly experienced and equipped lab such as Mayo Quant, ARUP, Mass General. If they do not have the latest and greatest equipment such as a Laser Spectrometer and an Atom Force Electron Microscope, the effort will be expensive and worthless.

hello. peach again. i have at least 6 of the symptoms and also rheumatoid and sporiatic arthritis. so i know where i stand. but, what can the doctors do to help this? nothing that i know of. except give medications that can worsen the problems. would love to know what the "OLD" people did for this many years ago. thank you for your knowledge and time you are a good person. i appreciate you.

@peach414144 Hi, Peach. So sorry to hear about your issue. However, I have been reading about some new medicines that might be coming on line later this year or early next. Frankly, from the sounds of things, the best thing you can do is convince your doc to have you tested for some form of Amyloidosis. Either go to Mayo-Rochester, City of Hope, Stanford, Johns Hopkins or some similar center. Do not trust any clinic or center less than the best. It really does not take much to tell you if you are on the right track, just a SERUM sFLC from a blood draw, and a proteinuria assessment from a 24- hour. Then, if your sFLC is out of the reference range for either or both Kappa or Lambda proteins, or above a half-gram of protein in your daily output of urine, then go after the more solid diagnoses. And for treatment of any form of Amyloidosis, from Alzheimer's to Lysozome, or whatever, there is lots of words out about new drugs coming to attack the problems. We are way past the old ways. About 125 years ago one of my relatives had nodules in her spine, as part of it, and the disorder eventually killed her. The real trick is to get the disorder nailed down as soon as possible so your life can be extended. I have to fight every day to push the doc and the lab here to do their job. But get your local doc involved. If that doc will not, find one who will fight for your life.

thank you. this is good for me to know.. only problem is i also have gloucoma and macular degeneration. distance driving is out am trying to put things together and i will keep you informed. but one must consider that i am on eleven prescription medications and should be on more but enough is enough. must work on this. peach barb

p.s. i am entering a bad form of dementia due to the severe anemia which makes it very difficult to travel and present myself clearly. this damm anemia takes my breath away. but i must try thank you again. peach

hi again. i just realized by remembering that i have h pylori. and now a pre pyloric stomach. again another inflammatory disease to add to the many others. i would be a great subject to help analyze this disease of many issues. keep trekkin. with care, peach,

I have diastolic dysfunction, probably due to hypertension. My cardiologist told me that in some cases it leads to heart failure down the road. So some do not progress.