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?

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

lpfnp | @lpfnp | Apr 8, 2023

With Right Sided Heart Failure, "Stiff Heart", do you have high Diastolic BP numbers?

Colleen Young, Connect Director | @colleenyoung | Apr 10, 2023

In reply to @lpfnp "With Right Sided Heart Failure, "Stiff Heart", do you have high Diastolic BP numbers?" + (show)

Welcome, @lpfnp. People with stiff heart often have high diastolic numbers, diastolic dysfunction. To help you connect with other members living with stiff heart, I moved your question to this existing discussion:

- Stiff Heart - diastolic heart failure https://connect.mayoclinic.org/discussion/stiff-heart-diastolic-heart-failure/

I did this so you can read previous posts and connect easily with members like @janet23 @deb2018 @tcokeefe @hopeful33250 @retirement75 @robschweiger @susikelley @susie7 @jam5 @mysisterbitme @annierae and many more.

I think you might appreciate also this video with Mayo Clinic's Dr. Timimi and the ensuing discussion among members.
– Confused about Stiff Heart, Diastolic Heart Failure, or HFpEF? https://connect.mayoclinic.org/discussion/confused-about-stiff-heart-diastolic-heart-failure-or-hfpef/

Do you measure your blood pressure regularly? Has your cardiologist recommended any lifestyle changes to help manage the diastolic dysfunction?

deb2018 | @deb2018 | Apr 10, 2023

In reply to @colleenyoung "Welcome, @lpfnp. People with stiff heart often have high diastolic numbers, diastolic dysfunction. To help you..." + (show)

Thank you. He had a huge myocardial bridge that went into his right ventricle. He had open heart surgery in February 2023 at The Cleveland Clinic in Ohio. Mayo Clinic never called us back after we sent them his info. The surgeon said he shouldn’t have survived as long as he did with how bad his bridge was

Teresa, Volunteer Mentor | @hopeful33250 | Apr 11, 2023

In reply to @deb2018 "Thank you. He had a huge myocardial bridge that went into his right ventricle. He had..." + (show)

Hello @deb2018

I'm so glad to hear that your husband has gotten the treatment that he needed. How is he doing since his surgery in February? Will he be able to start cardiac rehab?

deb2018 | @deb2018 | Apr 11, 2023

In reply to @hopeful33250 "Hello @deb2018 I'm so glad to hear that your husband has gotten the treatment that he..." + (show)

He has to go back to Cleveland clinic to have another heart cath and other tests to verify his LAD is performing properly now that it’s been unroofed before starting rehab. Unfortunately he ended up with multiple PE’s so he’s now on home oxygen and everything has been delayed a few months while the clots dissolve. Tentatively we are going back in July if he’s healthy enough.

Teresa, Volunteer Mentor | @hopeful33250 | Apr 11, 2023

In reply to @deb2018 "He has to go back to Cleveland clinic to have another heart cath and other tests..." + (show)

Hello @deb2018

I'll look forward to hearing from you again. It sounds like the clots are being treated now. Is he taking a blood thinner at home now?

deb2018 | @deb2018 | Apr 11, 2023

Yes he was in step down for 5 days on heparin and is now on Eliquis for 6 months and on oxygen until he no longer needs it obviously

sweetmaddy1 | @sweetmaddy1 | Sep 1, 2023

In reply to @hopeful33250 "Hello @sammysky and welcome to Mayo Connect. I am glad that you joined the discussion on..." + (show)

@hopeful33250

Hello @sammysky and welcome to Mayo Connect. I am glad that you joined the discussion on diastolic heart failure.

This term, heart failure, can certainly sound frightening, I know. However, there are different levels of heart failure, many are not so bad. I would encourage you to read this article from the American Heart Association, https://www.heart.org/en/health-topics/heart-failure/what-is-heart-failure/types-of-heart-failure

Here is the introduction to the article:

"Left-sided heart failure
The heart's pumping action moves oxygen-rich blood as it travels from the lungs to the left atrium, then on to the left ventricle, which pumps it to the rest of the body. The left ventricle supplies most of the heart's pumping power, so it's larger than the other chambers and essential for normal function. In left-sided or left ventricular (LV) heart failure, the left side of the heart must work harder to pump the same amount of blood.

There are two types of left-sided heart failure. Drug treatments are different for the two types.

Heart failure with reduced ejection fraction (HFrEF), also called systolic failure: The left ventricle loses its ability to contract normally. The heart can't pump with enough force to push enough blood into circulation.
Heart failure with preserved ejection fraction (HFpEF), also called diastolic failure (or diastolic dysfunction): The left ventricle loses its ability to relax normally (because the muscle has become stiff). The heart can't properly fill with blood during the resting period between each beat."

As you can see, from the article, the ejection fraction is also an important piece of information. Please take a look at a copy of your last Echo or other heart exam and see if you can find this number.

Another important factor is to think about the kind of symptoms you are having. Do you have swelling of the feet, hands? Any shortness of breath? Has the doctor prescribed any meds to deal with your symptoms?

I have had diastolic dysfunction for many years, so this diagnosis is something that you can live with for many years. It is important to adopt a heart-friendly lifestyle that includes a healthy diet and exercise.

I look forward to you posting again and hearing how you are doing.

Jump to this post

Hello, I'm 41 years old and the mother of an 8 month old daughter and a 25 year old son, I recently was diagnosed with diastolic heart failure. I'm scared and trying to find as much info as possible. I have had heart flutters all my life and was diagnosed with mitral valve prolapse in my teen years. When I was pregnant with my daughter I wore a heart monitor for two weeks because my heart was doing PVCs so much. I'm just worried I want be around to see my daughter grow up, I'm very depressed and worried. When I saw your post about living for many years with this disease it gave me a spark of hope. I hope you are still doing well too.
Maddy

Teresa, Volunteer Mentor | @hopeful33250 | Sep 1, 2023

In reply to @sweetmaddy1 "Hello, I'm 41 years old and the mother of an 8 month old daughter and a..." + (show)

Hello @sweetmaddy1 and welcome to Mayo Clinic Connect. I am glad that you found this forum. It is a great place to learn about the experiences of others and be supported and encouraged.

I see that you've been diagnosed with diastolic heart failure. I suppose you have had an echocardiogram. If so, was the number for the ejection fraction mentioned in the report? It might be listed as EF. This is an important number that determines the functioning of the heart.

It looks like you have also had some heart rhythm problems as well. Are you seeing a cardiologist who specializes in heart rhythm problems? These cardiologists are referred to as cardiac electrophysiologists.

We have several discussions on Connect for heart rhythm. Here is a link specifically devoted to PACS and PVCs. Here you can connect with others and learn more about their experiences.
https://connect.mayoclinic.org/discussion/living-with-pacs-and-pvcs/
Also, here is some information from the Mayo Clinic website that you might find helpful.
https://www.mayoclinic.org/departments-centers/heart-rhythm-clinic/overview/ovc-20442477
I'm wondering what type of tests your current cardiology team have performed. Are you currently taking meds? What are your most difficult symptoms right now?

jmb73 | @jmb73 | Dec 31, 2023

Hi Everyone,-
I don't know if this is the right group but I was just diagnosed with CHF. I was in the hospital for 4 days and am having the same symptoms but milder. I am on Lasix 4 mg and have already put on a half pound. I have Sjogrens and need to drink a lot of water but was told to limit it to 64oz. I am unable to have anything with artificial sugar as it makes me sick and gives me a headache so I sip water all day. 64 oz goes fast since I have to count an orange as 8 oz, I am monitoring my sodium and don't understand why I have put on weight. If I put on 5 lbs, I need to go back to the hospital- I really don't want to do that. They said to exercise but I am weak and short of breath when I do anything. Part of my heart has calcified, but they don't seem as concerned as I am. Any help would be greatly appreciated.
Thank you