Stiff Heart - diastolic heart failure

Posted by evelyn247 @evelyn247, May 17, 2016

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?

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@hopeful33250

Hello @harmonybentley and welcome to Mayo Connect,

I am glad that you mentioned this topic. Yes, stiff heart, is a rather unusual term. It can also be known as diastolic dysfunction. This is something that I have as well. There are different reasons for it. In my case, it is related to valvular disease (aortic valve). Here is link from Mayo's website about this, https://www.mayoclinic.org/diseases-conditions/heart-valve-disease/symptoms-causes/syc-20353727.

Here is some information from the American Heart Association about the term, stiff heart, https://www.heart.org/en/search?searchText=Stiff+heart

While stiff heart does sound like a very ominous disorder, it's not all that bad. It depends a lot on your ejection fraction (EF). You can find out what your EF is by looking at your echocardiogram report. While I've had diastolic dysfunction for well over 20 years, my EF is still high so I don't have any serious symptoms like edema (swelling) in the extremities. I do, however, get very tired after exercise.

There are great meds to help the heart function better when it is stiff and not pumping the way it should. ACE Inhibitors are very good, I take one a day. Also, beta blockers are good as they keep the heart rate from getting too high. I take one of those as well.

@harmonybentley, How long ago were you diagnosed with "stiff heart"? What type of heart-related symptoms do you have, i.e, shortness of breath, swelling of hands, feet, pain, fatigue when you exercise, etc.? Are you taking any meds now?

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Hello. Well I found out that I have a stiff heart a hard way a few weeks ago I woke up and I was wheezing badly. I was a bit dizzy and felt a bit weak as well walking up any stairs knocked the wind out of me also had pain in both arms and shoulder s my husband took me to the hospital they immediately checked me to see if I was having an heart attack. My blood pressure was high the ecg showed no signs of anything bloodwork came back no heart attack they did a chest X-ray and found. Water in my lungs and chest. So they said I was having heart failure I was sent home with water pills saw a follow up dr a few days later they ordered a ultrasound on my heart. And I’m also having thyroid problems was st my endrincoligist yesterday he had access to my hospital records and he saw the echocharogram report he read it then said to me you have a stiff heart. So I’m waiting to hear back from the hospital to go back for a follow up appointment about this echocardiogram

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@harmonybentley

Anyone else been diagnosed with a stiff heart what does it mean how do you get it

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It sounds as if you had a scary start to this heart problem, @harmonybentley. I am so glad to hear that you got to the ER quickly and treatment began. As I mentioned in my first post to you, there are great medications for treating heart failure. I wish you well as you follow up on this.

Is the diuretic (water pill) the only med you are taking now?

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@hopeful33250

It sounds as if you had a scary start to this heart problem, @harmonybentley. I am so glad to hear that you got to the ER quickly and treatment began. As I mentioned in my first post to you, there are great medications for treating heart failure. I wish you well as you follow up on this.

Is the diuretic (water pill) the only med you are taking now?

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I am on many medications for various illnesses. I am in the process of weaning off prednisone I have a very high inflammation level though out my body my rheumatologist has tried every oral medication on me nothing has reduced the inflammation in my body example. I was on methotrexate and a sulphurlazine plaquinel and the prednisone. I do have Graves’ disease and was well treated for 32 years till now everything went out of whack just they past few months I m also prediabetic. But when I was at the hospital 2 weeks ago they also put me on a low dosage of metformin to reduce. My blood pressure. I am now in my 5 th week of weaning off prednisone I had been on in since April 2018. For rheumatoid arthritis. I also have GERD and have a problem of my stomach empty so on a few meds for those reasons. The water pill I was given 2 weeks ago at emerg was not strong enough so when I went to the follow up appointment they double the dosage I’m sorry I’m all over the place. About meds and heath issues. So now I’m severely hyperthyroid. All this is crazy. As we speak I’m waiting for the hospital to call so I can start dealing with this stiff heart issue thank you for been here I needed someone to tell all this too

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@harmonybentley

Anyone else been diagnosed with a stiff heart what does it mean how do you get it

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Hi @harmonybentley, I'd like to add my welcome. You may also be interested in readying this discussion about diastolic heart failure (stiff heart) where you'll read posts from members like @jigglejaws94 @c410djh @thankfulalways @mpeters @ninimurphy @bjanderson @lioness and more.

Harmony, I hope you have a physician or team of physicians who oversee the management of your particular set of multiple chronic conditions. It can't be easy to navigate the drugs to have effective management and also avoid potential drug interactions. Do you have a good relationship with your pharmacist? Pharmacists are great partners in one's care.

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@colleenyoung

Hi @harmonybentley, I'd like to add my welcome. You may also be interested in readying this discussion about diastolic heart failure (stiff heart) where you'll read posts from members like @jigglejaws94 @c410djh @thankfulalways @mpeters @ninimurphy @bjanderson @lioness and more.

Harmony, I hope you have a physician or team of physicians who oversee the management of your particular set of multiple chronic conditions. It can't be easy to navigate the drugs to have effective management and also avoid potential drug interactions. Do you have a good relationship with your pharmacist? Pharmacists are great partners in one's care.

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Hello it’s a pleasure to meet you I am new on here may need some guidance but yes I would like to join the group discussion thank you

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@harmonybentley

I am on many medications for various illnesses. I am in the process of weaning off prednisone I have a very high inflammation level though out my body my rheumatologist has tried every oral medication on me nothing has reduced the inflammation in my body example. I was on methotrexate and a sulphurlazine plaquinel and the prednisone. I do have Graves’ disease and was well treated for 32 years till now everything went out of whack just they past few months I m also prediabetic. But when I was at the hospital 2 weeks ago they also put me on a low dosage of metformin to reduce. My blood pressure. I am now in my 5 th week of weaning off prednisone I had been on in since April 2018. For rheumatoid arthritis. I also have GERD and have a problem of my stomach empty so on a few meds for those reasons. The water pill I was given 2 weeks ago at emerg was not strong enough so when I went to the follow up appointment they double the dosage I’m sorry I’m all over the place. About meds and heath issues. So now I’m severely hyperthyroid. All this is crazy. As we speak I’m waiting for the hospital to call so I can start dealing with this stiff heart issue thank you for been here I needed someone to tell all this too

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@harmoneybently Id like to welcome you also we are all here to help each other .Back home in 1996 I had a triple by pass just had a Doppler and do have a diagnosis of cardiomyopathy but I hope I can help with some information about inflammation.I have it all throughout my body from various problems.Tumeric,and ginger have been found to be very helpful for this You can get capsules but since you have stomach issues as I do I found drinking a tea made of ginger-tumeric is good .You can buy it at Trader Joes or Amazon.I am glad to here you are under the care of a endocrinologist and cardiologist As Colleen said the pharmacist knows all about meds and interactions,side effects .One other thing even tho you are worried 😟 your emotions play a big part in recovery so try not to worry ,tough I know .

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@oldkarl

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.

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Wow there may be a rare disease out there that people don't know about if you think you're having trouble with all of your valves. Montauk dress like what I've got doesn't matter much he said oh by the way you do have a stiff heart. Don't know anything about any of it but I want to say bless your heart to you

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@rbnwalls2

Wow there may be a rare disease out there that people don't know about if you think you're having trouble with all of your valves. Montauk dress like what I've got doesn't matter much he said oh by the way you do have a stiff heart. Don't know anything about any of it but I want to say bless your heart to you

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Hi @rbnwalls2, have you been diagnosed with cardiac amyloidosis, also called “Stiff Heart Syndrome?”

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Research studies have shown that Entresto may help improve HFpEF. I thought you might be interested in learning more about this clinical trial from Mayo Clinic, which is open for participation: https://clinicaltrials.gov/ct2/show/NCT03506412
The NIH-funded trial will evaluate the the efficacy of Entresto in patients who’ve been diagnosed with a stiff heart.

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@kanaazpereira

Research studies have shown that Entresto may help improve HFpEF. I thought you might be interested in learning more about this clinical trial from Mayo Clinic, which is open for participation: https://clinicaltrials.gov/ct2/show/NCT03506412
The NIH-funded trial will evaluate the the efficacy of Entresto in patients who’ve been diagnosed with a stiff heart.

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Hi, I was just at the Mayo Clinic in Rochester last week for a heart cath and received a definitive diagnosis of diastolic heart failure. Dr. Redfield, my cardiologist, thinks that it is stiffening caused by MCTD. She mentioned Entresto may be approved in a year. Is it too late to be in the clinical trial?

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