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?

Liked by Solo Act, jodeej

@yac53

I have diastolic heart failure and get tired walking a short distance will this improve and what is future outlook

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Much depends on how this was diagnosed. Sounds like mine. If the cardo looked at section aVL of a 12-lead ECG, and saw a line that looks flatter than the section just above it, aVR, or looks like it is just sort of humming, there are some diseases you will come to know. There is not much treatment apart from large (80) Methotrexate injections each week, and very strict diet. You can look it up on the Mayo-MN site, or the University of Helsinki Hospital/school site. I am 80 years old now, and still moving around, and I have Finnish Amy. But it must be diagnosed by molecular studies now. And I have a list of over 200 signs and symptoms, many of which support the dX. Organomegaly of almost every internal organ, blood issues, Stiff Heart, various cancers, leukemias, skin eruptions, brittle teeth, facial anomalies, purpura, brittle nails. I have written my stuff up, and you or anyone else is welcome to it, electronically. https://bit.Ly/2jtypp9 But do get a top lab, like johns hopkins, or Boston to talk with you. It is very under-diagnosed everywhere.

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@yac53

I have diastolic heart failure and get tired walking a short distance will this improve and what is future outlook

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@yac53 one other thing here is an article on Heart Failure which includes diastolic
https://www.mayoclinic.org/diseases-conditions/heart-failure/symptoms-causes/syc-20373142

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@susikelley

I was told i have stiff heart, CHF, snd im scared going for second opinion

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Hello @susikelley and welcome to Mayo Clinic Connect! I'm so glad that you joined us. As you see, one of our moderators has moved your discussion to an active discussion that is currently going on about stiff heart and heart failure. The benefit to this is being able to share like experiences with other members of Connect. Yes, any heart diagnosis can bring on anxiety but at this time it is important to face your fears and seek a second opinion if that seems like the right thing to do.

You say that you have CHF, congestive heart failure, does that mean you are short of breath or have edema (swelling in your extremities)?

I have had a stiff heart for over 20 years and diastolic dysfunction (a mild form of heart failure) and I'm still functioning pretty well. I do have to monitor my activities and not get overly tired, though.

How are you feeling? Please share more about yourself and your symptoms as you are comfortable doing so.

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I was told i have stiff heart, CHF, snd im scared going for second opinion

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@hopeful33250

Hello @susikelley and welcome to Mayo Clinic Connect! I'm so glad that you joined us. As you see, one of our moderators has moved your discussion to an active discussion that is currently going on about stiff heart and heart failure. The benefit to this is being able to share like experiences with other members of Connect. Yes, any heart diagnosis can bring on anxiety but at this time it is important to face your fears and seek a second opinion if that seems like the right thing to do.

You say that you have CHF, congestive heart failure, does that mean you are short of breath or have edema (swelling in your extremities)?

I have had a stiff heart for over 20 years and diastolic dysfunction (a mild form of heart failure) and I'm still functioning pretty well. I do have to monitor my activities and not get overly tired, though.

How are you feeling? Please share more about yourself and your symptoms as you are comfortable doing so.

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Im seem to be more and tried, im seeing one the the better heart docs on monday. My heart was fine 7months ago, it has went from 65% to 45 percent.

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@susikelley

Im seem to be more and tried, im seeing one the the better heart docs on monday. My heart was fine 7months ago, it has went from 65% to 45 percent.

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Short of breath, stiff heart, and congestive heart failure

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@susikelley I completely understand your worried and I have been there myself. Any change to your Heart can be scary but let me assure you that there are many treatment strategies to help live a normal life with maybe some changes to Lifestyle all for the better. I will say based on your ejection Factor of 45 % I was pretty happy when mine got that high. I started my journey with an EF of 5% and got to a height of 50% before other issues caused me to need a transplant. But please know that I had a normal life for over 10 years just with medication and a pacemaker. I personally know many people that did not even get to the pacemaker stage. So i want you to know that there are many treatments for CHF and low EF. Im not familiar with stiff heart my basic problem was an enlarged heart. So try to relax and find yourself a great cardiologist ( if your near a Mayo Clinic I highly recommend them) who will answer your questions and put your mind at ease. I hope that helps Please stay in touch as to what you find out.
Have a Blessed Day
Dana

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@susikelley

Im seem to be more and tried, im seeing one the the better heart docs on monday. My heart was fine 7months ago, it has went from 65% to 45 percent.

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@susikelley I hope you will post again after your appointment on Monday. Here is a link with some suggestions for meeting with a new specialist. Perhaps they will be helpful to you for your appointment on Monday. Please click on the link and read the suggestions. I think that preparing for this visit will help you to be less stressed and may give you more confidence as you talk with the doctor.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
Is there someone who can go with you to your appointment, @susikelley?

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Hi. I'm AnnieRae, from Missouri. I live in a rural town, and I'm so thankful to have found you all.

Two weeks ago I was in the hospital and had a heart Cath. When I woke up, the cardiologist told me I had a "stiff heart". He seemed quite concerned about the "stiffness" of it. He also mentioned a kind of protein that was elevated that causes it, and that it was familial. They put me on beta blockers (metoprolol) and diuretics (lasix) and isosorbide Immure 30 ER daily, and daily chewable aspirin 81mg and sent me home. When I looked it up, what I found was surprising.
They also told me to weigh daily and if I gained more than two pounds in a day's time to call. It's not uncommon for me to gain several.

I also got the reports.

The Cath report showed: "The Left atrium was dilated. The Left Ventricle had a pressure of 30. We injected intraventricular NTG (400mcg) and were able to get it down to 23 but no lower." (When I asked him in the office today what it should have been he said "no more than 10.") Summary of findings: 1) noncritical CAD, 2) LV systolic function normal. 3) Evidence of Left Ventricular diastolic dysfunction. Also my EF was 75.

The ECHO showed a dilated Left atrium. Mitral doppler indices were consistent with impaired relaxation. (systolic dysfunction)
Also a dilated IVC and respiratory collapse consistent with elevated right atrial pressure.

There was also Cardiac perfusion scan and a stress test done. It showed Lateral reversible ischemia.

So that brings me to today. When I saw him, (and I have to say I love him to death, he's super sweet) but when he came in he seemed to have forgotten me completely and everything he'd told me. I asked about the stiff heart; he had to look up his findings on the sheet. Then he realized it was there and said, "Yes, it's probably because of your age." (Yes, I am 69) When I asked about his mentioning the familial protein, he wrote it down. It says "Titan"

When I asked about the ECHO report, he said, "I don't know anything about that." Then he looked it up and said, "It's all related." And asked me if anyone had ever told me I have lung disease. I mentioned that my pulmonologist in 2005 had said my right diaphragm doesn't work well.

At the end he did ask if I wanted him to do a heart biopsy, and I said "I'd like to think about it." (Because by that time I was unsure I wanted him to do anything more to me.) But he said diet and exercise were the only answers, and he recommended five miles a day to ten. I reminded him I'm a polio survivor, and normally wear leg braces, and that it's very doubtful I can ever do five miles a day. He seemed to think I could work up to it.

So now, I have no idea what to do? Honest, I'm at a complete loss. I really think he had me confused with someone else. I'm not supposed to go back until January, and I'm so short of breath right now, I'm afraid I'll be dead by then.

Advice, please?

~Annie Rae

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@annierae Hello AnnieRae and welcome to Mayo Clinic Connect. I'm also glad that you found Connect and posted your concerns about your recent heart diagnosis.

You mention that you live in a rural area, so while it may not be convenient, I highly recommend that you seek a second opinion with another cardiologist. Are there any heart centers nearby, such as a university medical school or another multi-disciplinary medical facility like Mayo Clinic? It will certainly be worth the time and effort to get an opinion from a doctor who can review all of your tests and help you understand exactly what is going on. As patients, we all deserve answers to our questions.

If you care to share more, could you tell me a little about the symptoms you were having that led to the heart cath? For example, were you having shortness of breath, chest pain, swelling of your feet or legs?

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Thank you, hopeful33250,for answering so quickly!

My symptoms? I began having quite a bit of shortness of breath in April just when I would walk down the hall from the bedroom to the living room , and sleeping- a lot. I felt as if I was full of fluid (in the abdomen along with weight gain) and spent many nights in the recliner because I couldn't sleep lying down. The fatigue was tremendous. Sometimes my right foot swells and sometimes both ankles swell.

(a note: I felt exactly like this in 2017, and the test they did then, (U/S and VQ scan) showed increased Right pulmonary pressures. It did get better, however, and there were no follow-up tests since then, until this time.) I just marked it down to a post polio syndrome crash.

This time, when I felt as if I was full of fluid, I had some diuretics here that the doctor prescribed when I had the earlier spell in 2017. There were only a few left and of course they were outdated, but still they did help some.

One other symptom: The reason I went to the hospital was because I woke up that Sunday morning (July 12th) with some chest pain Left upper chest. It went away, and then came back about noon. That was the reason I went to the ER. I probably would not have gone except for the fact that they had called earlier and told me my cardiac perfusion test showed I had lateral ischemia and needed a Cardiac Cath.

Thanks for asking, and I appreciate so much your responding!
btw, hubby agrees with you about the second opinion.

annierae

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@annierae

Thank you, hopeful33250,for answering so quickly!

My symptoms? I began having quite a bit of shortness of breath in April just when I would walk down the hall from the bedroom to the living room , and sleeping- a lot. I felt as if I was full of fluid (in the abdomen along with weight gain) and spent many nights in the recliner because I couldn't sleep lying down. The fatigue was tremendous. Sometimes my right foot swells and sometimes both ankles swell.

(a note: I felt exactly like this in 2017, and the test they did then, (U/S and VQ scan) showed increased Right pulmonary pressures. It did get better, however, and there were no follow-up tests since then, until this time.) I just marked it down to a post polio syndrome crash.

This time, when I felt as if I was full of fluid, I had some diuretics here that the doctor prescribed when I had the earlier spell in 2017. There were only a few left and of course they were outdated, but still they did help some.

One other symptom: The reason I went to the hospital was because I woke up that Sunday morning (July 12th) with some chest pain Left upper chest. It went away, and then came back about noon. That was the reason I went to the ER. I probably would not have gone except for the fact that they had called earlier and told me my cardiac perfusion test showed I had lateral ischemia and needed a Cardiac Cath.

Thanks for asking, and I appreciate so much your responding!
btw, hubby agrees with you about the second opinion.

annierae

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I so appreciate the extra information about your symptoms, @annierae. That does give our Members a good picture of what you have been experiencing.

Since your hubby agrees with the idea of a second opinion, can you think of a good heart center where you could be seen? Will you consider making an appointment? (I hope so!)

Liked by annierae

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@susikelley

Im seem to be more and tried, im seeing one the the better heart docs on monday. My heart was fine 7months ago, it has went from 65% to 45 percent.

Jump to this post

Hello @susikelley,

I've been thinking about you and I wondering about your appointment with the new cardiologist. Did you get any helpful information? Has your treatment or diagnosis changed or were any new meds added?
I look forward to hearing from you.

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Hi @annierae and I also welcome you. I just read your current situation, and the not being able to sleep lying down and the shortness of breath plus the feeling of water weight reminded me so much of what started my heart issues. I was having the same issue not being able to sleep lying down when I finally went to a hospital. Well, when they saw me and realized how bad I looked I was rushed into the trama section and the diagnosis was lots of water had built up around my heart and lungs which caused the shortness of breath. Well basically I was put on iv diuretics and after a couple of days of peeing, I was transferred to a cardiac hospital and was treated for an enlarged heart. It was explained that my heart was weakened by all the fluid and caused my heart to enlarge fighting against the fluid. Luckily my PCP at the time realized what was going on and called in a cardiologist that diagnosed the problem. Mine my ef dropped to 5 % and I ended up with meds and a pacemaker. At least with you it looks like your EF at 70 % your heart sounds like it's in better shape but like everyone else I would get another opinion.
Have a Blessed Day
Dana

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@danab

Hi @annierae and I also welcome you. I just read your current situation, and the not being able to sleep lying down and the shortness of breath plus the feeling of water weight reminded me so much of what started my heart issues. I was having the same issue not being able to sleep lying down when I finally went to a hospital. Well, when they saw me and realized how bad I looked I was rushed into the trama section and the diagnosis was lots of water had built up around my heart and lungs which caused the shortness of breath. Well basically I was put on iv diuretics and after a couple of days of peeing, I was transferred to a cardiac hospital and was treated for an enlarged heart. It was explained that my heart was weakened by all the fluid and caused my heart to enlarge fighting against the fluid. Luckily my PCP at the time realized what was going on and called in a cardiologist that diagnosed the problem. Mine my ef dropped to 5 % and I ended up with meds and a pacemaker. At least with you it looks like your EF at 70 % your heart sounds like it's in better shape but like everyone else I would get another opinion.
Have a Blessed Day
Dana

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Thank you, Dana, Volunteer Mentor @danab, I have contacted my regular internist and if he doesn't repsond by this evening and offer to give me a referral to Mayo I'll be doing that myself. You have a blessed day too!

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