Stiff Heart - diastolic heart failure

I know I say this a lot on these groups. "Stiff heart." and other such issues can be secondary to a large variety of issues. For instance, mine is apparently part of my AL Amyloidosis, Or another sort of Amyloidosis, and there are over a thousand known varieties. Any one or combination of them might be involved in a stiff heart. The reason I say this is that the treatment must match the disease. Please find an experienced clinic to walk with you through the search for identification. This will inform the treatment and prognosis. And the clinic search is difficult. I could take my choice of a couple thousand clinics in America who will each claim to be "educated, experienced and expert." Yet I have found many MDs who will say "All amyloidosis is the same, and is to be treated the same." If they say that, or anything similar, walk (don't run) to the nearest exit. Keep an open mind. Look for honest labs. How thick are your ventricular and atrial walls? How are the electro-mechanical connections in your cardiac control nerves? How is your systolic/dystolic voltage? over or under 0.5 mv dystolic? Are there other organs involved? Just keep getting pushier as you learn. There are so many things to look for.

Is an LVEDP of 24 on a cardiac carh considered low , moderate or severely elevated?

I have done the same as most of the others who looked up LVEDP on the net. I see that 24 is elevated. There is some good stuff there on Google and others for LVEDP. However, about Mildly elevated, or severely, or whatever, I almost never trust words like that. Just go with the number, and ask your cardi what it means. I think the labs and clinics do us a dis-service by using nonsense words like mildly, etc.

Hi @tomtodaro,

Cardiac catherization is a highly technical procedure, and involves many measurements including LVEDP; it would be best to consult with a specialist to interpret these numbers.
I'm tagging @bergem @dennisl27 @mummy12 @fr0ggie @donnac1969 @HeartPatches @cynaburst @clarisebt @mimi68 and @hopeful33250 as I'm sure they will have more insight.

@tomtodaro, may I ask if you could share a few more details; why did you need to undergo cardiac catherization? Was it done recently?

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.

Yes and No. My diastolic dysfunction is partly the result of valve, but this is secondary to cardiac amyloid involvement in the valve muscle tissue.

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.