Mayo Clinic Connect
I have been diagnosed with “stiff heart” and would like to have as much information on this topic first hand. Any way to improve this conditions? What do I expect as it progresses?
Liked by Solo Act, jodeej, annierae
Here’s some basic information about heart failure to get you started http://www.mayoclinic.org/diseases-conditions/heart-failure/basics/causes/con-20029801 I’d like to tag a few members of the Heart Health group to join this conversation with first hand experiences Of course, healthy living is good for heart health. @barbarajane @cynaburst @cynthiamary @lynnkay1956 @medic7054 and @HeartPatches will you join me in welcoming Evelyn to our group. She has some questions about “stiff heart” and diastolic heart failure.
Evelyn, you may wish to join this conversation about healthy heart living https://connect.mayoclinic.org/discussion/i-have-congested-heart-failure-had-a-quadruple-heart-surgery-8-years/
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Diastolic heart failure basically means that your heart is too stiff and does not relax as it should. There are some medications that can help with it, like beta blockers. And it does not always progress. Everyone is different, so there is not one typical course. Any treatment would be focussed on trying to get the heart to fill more completely, so as to relieve shortness of breath and chest pain.
Hope that helps. I have it also as a result of my Hypertrophic Cardiomyopathy or HCM. Do you have a condition that causes it?
Liked by Colleen Young, Connect Director, wandikarnadi, Teresa, Volunteer Mentor
I also have diastolic dysfunction, I’ve been told it is a result of heart valve problems. Is that true for you as well?
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I was just had the same diagnosis, diastolic dysfunction also mitriol valve regurgition. I also would like to know more about it.
Welcome to Connect, @sdann777.
Here are some additional discussions about mitral valve regurgitation and repair, where you’ll meet additional members.
– Mitral Valve & Tricuspid valve regurgitation: when to see a cardiologist? http://mayocl.in/2gzspdC
– Mitral valve repair http://mayocl.in/2fSta3p
Sdann, Is this a recent diagnosis for you? We look forward to getting to know more about you.
You can also google — Isolated cardiac amyloidosis as well as stiff heart syndrome — one in the same. Here is one article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3134435/
the “Stiff Heart” can be a sign of a variety of ailments. One that is fairly easy to check out is cardiac amyloidosis of some sort. It is a rare disease, but few treatments that really work. Some questions to ask: How thick are your ventricular walls? If they are over 17 mm, could be. On a 12-lead ECG, reading diastolic electrics, if the signal shows over 0.5, it is probably hypertrophy. But if it is under 0.5 mv, Could be. Check with Dr. Morey Gertz at Mayo MN, or get his book, “Amyloidosis- Diagnosis and Treatment.” Expensive, but worth it. It is the gold standard for literature on Amy… at this point. The final chapter is great here. And if the diastolic signal bounces all over the place (under 0.5mv), get thee to a doctor (hematologist) who will take the search for your answers seriously and openly. I have searched for answers for years, and found no diagnosis accuracy before reading this book and finding Dr. Reeder at Mayo AZ. If they will not take the search seriously, looking for protein in the blood and urine, go someplace else. If you do not, you will be dead before you know it. The stuff gets into the spaces between cells, causing them to swell and interrupt the flow of info from the brain. When it reaches the nerves feeding the heart, you will soon have non-resuscible heart stoppage. It is an instant death at that point, usually over age 60, but not always.
Just a couple more quick notes. As I have searched for answers, the most difficult part of the search is finding doctors who will work with the techs of the labs around the country. For years, techs have pointed out to me that I had markers of amyloidosis of different kinds. Then almost without fail, doctors would say “Oh, that tech is either too old or too young to know what they are doing, and they have made a mistake.” This has happened at least 100 times, and is an insult to the great labs and techs around the country. Mayo, ARUP, Brigham & W, And to doctors who really try to find the answers. Great doctors and great labs can and usually will do great work together. But saying “I am an expert on amyloidosis” means nothing but a big ego. Go elsewhere. Mayo. Stanford, B&W, UofUtah, City of Hope, Anderson, etc.
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.
Liked by Teresa, Volunteer Mentor, Solo Act, mzhp1988, tcokeefe ... see all
@cynaburst Thanks for that informative and positive post about DD. I appreciate it! Teresa
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.
Liked by Colleen Young, Connect Director, mzhp1988
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.
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?
Liked by Teresa, Volunteer Mentor
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.
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