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
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?
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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.
Liked by Teresa, Volunteer Mentor
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.
I also have diastolic dysfunction, I’ve been told it is a result of heart valve problems. Is that true for you as well?
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.
@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,
Ty I have been checked for amyloidosis and I don’t have it. I believe mine was caused by mitral valve & undiagnosed sleep apnea.
Liked by Kanaaz Pereira, Connect Moderator
I too have been diagnosed with stiff heart causing heart failure. I have AF as well and Fibromyalgia, Plantart Fasciitis in both heels. I was told by the Consultant yesterday I have a condition that they think is from birth, A thickening of the heart muscke at the sides and top of the heart. He has given me 6 months the sort myself out. Firstly I have 6 months to lose 2 stone in weight and also to do more exercise. He understands it is difficult for me with the Fibromyalgia that seems to break through in my right knee and thigh. Moving around not a pain in one okace. I cannot walk far because of the breathlessness or do any physical exercise like carrying things or bending to lift things up. I do TaiChi every week and have Traditional Chinese Medicine in the form of acupuncture.If I don't get the weight down he will no longer see me. He thinks the problem has been there from birth. Has anyone else had these same problems together? I an going to give it my best shot. I want to live life.
@thankfulalways Sorry to hear about your heart I had a triple by pass in 1996 at that time the Dr.told me not to eat red meat to much fat eat poultry or fish no dressing with fat like buttermilk also no bending,or lifting heavy things I still can't do my floors Get a housekeeper if you haven't already do what exercise you can best is chair exercise,this has helped me with my fracture back and fibro.I use a walker when I do alot of walking ,takes the pressure of back,legs.
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.
I have Diastolic heart failure as a result of HOCM!
I have been through many medications and surgeries in last few years to address issues caused by HOCM. As a result I am having heart failure and am being put on transplant list, which does not come without its own major drawbacks.
It started out with little Arrhythmias and just blossomed from there over the last 10 years.
Medications played a big part in keeping me healthy and functioning in the meantime.
Having a cardiologist and pulmonologist that are good and work together is a blessing!
Liked by Rosemary, Volunteer Mentor, Teresa, Volunteer Mentor, Kanaaz Pereira, Connect Moderator, jodeej
I just read your most recent post and was touched by all you have been through over the past few years. I was also touched by your attitude and the fact that you expressed gratefulness for your medical team in the way they work so well together.
As you are now experiencing heart failure and your doctor is suggesting that you be put on the transplant list, I would encourage you to join the Transplant discussion group here on Mayo Clinic Connect. There you will find the Members much like yourself. They have amazing attitudes and gratefulness for all the help they have experienced. So many of them have been transplanted and are feeling so much better now. I believe that you will find encouragement and help as you face the next step in your healing. Here is the link to those discussions, https://connect.mayoclinic.org/group/transplants/
I would also like to tag the Mentor of that group, Rosemary (@rosemarya) to this discussion. Rosemary has been double-transplanted with a new liver and kidney several years ago at Mayo Clinic. I would also like to invite JK, (@contentandwell) who also received a new liver at a hospital in the Boston area and @jodeej whose husband was recently transplanted at Mayo. They are all living (and smiling) examples of how good life can be post-transplant. I'm sure you will enjoy getting to know these courageous (and thankful) ladies.
Will you keep in touch and let me know how you are doing?
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director, Kanaaz Pereira, Connect Moderator, jodeej
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