1. < Heart & Blood Health

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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tcokeefe | @tcokeefe | Feb 22, 2020
In reply to @imhart "Here's what I found...."FDA grants Fast Track designation for Farxiga in heart failure PUBLISHED 16 September..." + (show)
@imhart

Here's what I found...."FDA grants Fast Track designation for Farxiga in heart failure
PUBLISHED
16 September 2019
AstraZeneca today announced that the US Food and Drug Administration (FDA) has granted Fast Track designation for the development of Farxiga (dapagliflozin) to reduce the risk of cardiovascular (CV) death, or the worsening of heart failure, in adults with heart failure with reduced ejection fraction (HFrEF) or preserved ejection fraction (HFpEF)...."

It helps with both types of heart failure, according to Margaret Redfield, MD, of the Mayo Clinic and my local Cardiologist, Garrick Stewart, MD, of the Brigham and Women's Hospital in Boston. If your A1C is even slightly elevated you can get on it.

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That’s great news!! Thanks!!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 23, 2020
In reply to @imhart "Hi Teresa, diastolic heart failure is heart failure with a preserved ejection fraction. So I believe..." + (show)
@imhart

Hi Teresa, diastolic heart failure is heart failure with a preserved ejection fraction. So I believe when they measured it it was within range, above 50. I don't remember the exact number. Nevertheless, I have an advanced stage c, class 3 heart failure. I have very high pressures within my heart with minimal activity. I have shortness of breath at times even at rest. I have difficulty sleeping if I don't have a lot of pillows to prop myself up. I have swollen hands and ankles. Without the diuretics I would have a lot of fluid build up because my heart is not taking enough in to pump it out. I have suffered with this for a long time without knowing what was happening to me. This was not on the radar screen of doctors locally because of my age and gender. I was told that I was simply depressed for many years. I am actually feeling a lot better with the treatment I'm on. My new local Cardiologist is optimistic that this can be reversed. But I'm not sure that is really known. In fact, it seems completely unknown at the point. At 53 I am not ready to go; there's a lot I would like to do! He prescribed the Farxiga. It does seem to be helping my heart muscle work better and allowing (flexibility) more blood into the heart. It also removes plasma/blood volume so the heart doesn't have to work as heard. In feeling better, I believe I can lose some weight, which will help too. Diet is critical here too. I drink fresh organic celery juice every morning, which has mineral salts to replace what I've lost. I eat a lot of fresh leafy greens and a variety of fruits and other vegetables. I still eat a small amount of quality, clean protein in meat and fish, although I've been told I would do better on an entirely plant based diet. This is unclear.

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I certainly appreciate all of this good information, @imhart. I'm glad that you are doing better.
I have had diastolic dysfunction for many years as well and use an ACE Inhibitor one daily and a Beta Blocker one daily. The ACE med helps the most, but they both work well together I suppose. My problem seems to result from a leaky aortic valve.

Have you had any valve problems?

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1 reply
imhart | @imhart | Feb 25, 2020
In reply to @hopeful33250 "I certainly appreciate all of this good information, @imhart. I'm glad that you are doing better...." + (show)
@hopeful33250

I certainly appreciate all of this good information, @imhart. I'm glad that you are doing better.
I have had diastolic dysfunction for many years as well and use an ACE Inhibitor one daily and a Beta Blocker one daily. The ACE med helps the most, but they both work well together I suppose. My problem seems to result from a leaky aortic valve.

Have you had any valve problems?

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I am on Spirolactone, Hydrochlorothiazide, Amlodipine and Farxiga for diastolic heart failure. I'm not sure why I'm not on an Ace Inhibitor or a Beta Blocker (I do have palpitations.) I do have aortic insufficiency but I've never been told that this "regurgitation" was the cause of the heart failure, which seems to be characterized as a "stiffening" of the heart tissue.

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nobody | @nobody | Mar 4, 2020
In reply to @imhart "Get on Spirolactone, possibly Hydrochlorothyozide, Farxiga, plenty of fruits and vegetables. Stay hydrated with pure water..." + (show)
@imhart

Get on Spirolactone, possibly Hydrochlorothyozide, Farxiga, plenty of fruits and vegetables. Stay hydrated with pure water with a little fresh lemon.

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I was told this week that I had to monitor my fluid intake to not over one liter a day. So it seems like a never ending battle. Laxiz doesn’t work if you don’t have enough fluids to flush it through your body. Was instructed to take 120 msg. I did and didn’t urinate for 18 hours.
Think my body is shutting down. Fluid gain is over 6 lbs per day.

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1 reply
imhart | @imhart | Mar 6, 2020
In reply to @nobody "I was told this week that I had to monitor my fluid intake to not over..." + (show)
@nobody

I was told this week that I had to monitor my fluid intake to not over one liter a day. So it seems like a never ending battle. Laxiz doesn’t work if you don’t have enough fluids to flush it through your body. Was instructed to take 120 msg. I did and didn’t urinate for 18 hours.
Think my body is shutting down. Fluid gain is over 6 lbs per day.

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You still need to keep hydrated. I would see your Cardiologist as soon as you can with those symptoms. It is difficult to get the right fluid balance with this condition. Diet and nutrition are also important. Take care.

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oldkarl | @oldkarl | Mar 6, 2020
In reply to @imhart "Hi Teresa, diastolic heart failure is heart failure with a preserved ejection fraction. So I believe..." + (show)
@imhart

Hi Teresa, diastolic heart failure is heart failure with a preserved ejection fraction. So I believe when they measured it it was within range, above 50. I don't remember the exact number. Nevertheless, I have an advanced stage c, class 3 heart failure. I have very high pressures within my heart with minimal activity. I have shortness of breath at times even at rest. I have difficulty sleeping if I don't have a lot of pillows to prop myself up. I have swollen hands and ankles. Without the diuretics I would have a lot of fluid build up because my heart is not taking enough in to pump it out. I have suffered with this for a long time without knowing what was happening to me. This was not on the radar screen of doctors locally because of my age and gender. I was told that I was simply depressed for many years. I am actually feeling a lot better with the treatment I'm on. My new local Cardiologist is optimistic that this can be reversed. But I'm not sure that is really known. In fact, it seems completely unknown at the point. At 53 I am not ready to go; there's a lot I would like to do! He prescribed the Farxiga. It does seem to be helping my heart muscle work better and allowing (flexibility) more blood into the heart. It also removes plasma/blood volume so the heart doesn't have to work as heard. In feeling better, I believe I can lose some weight, which will help too. Diet is critical here too. I drink fresh organic celery juice every morning, which has mineral salts to replace what I've lost. I eat a lot of fresh leafy greens and a variety of fruits and other vegetables. I still eat a small amount of quality, clean protein in meat and fish, although I've been told I would do better on an entirely plant based diet. This is unclear.

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Good morning!. I just read the post from @imhart. Sounds really familiar. I have the "diastolic heart failure is heart failure with a preserved ejection fraction." as well, class 3 heart failure, 1st degree A-V Block. On my 12-lead ECG, the aVL section, when expanded greatly, shows the line is vibrating so rapidly and tiny that it looks like straight-line. For decades, this has been recognized as a "Positive Obligate" marker for Gelsolin (also known as Finnish Hereditary Systemic Amyloidosis). I call it "Gelsolin Viking Dragon", because it seems it may have been brought to Finland from Asia (Japan?) around the time of Jesus. Anyway, Mayo and the University of Helsinki Hospital, and other places, including OMIM. My Ejection Fraction runs in the high 50's. All this and about another hundred signs and symptoms all point to the Dragon. Constipation, heart failure and TSE deposits seem to be my worst systemic problems.

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yac53 | @yac53 | Jun 12, 2020

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

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2 replies
Mentor
Dana, Volunteer Mentor | @danab | Jun 12, 2020

@yac53 Hi and welcome to connect. Let me just say we are a group of Patients that have had a variety of conditions and we try to help each other with things we have experienced. My I ask how long you have know of this diagnosis? What kind of treatment you Doctors have started? I personally have had what is called Congestive Heart Failure with similar symptoms. There are may different types of medicines and other treatments that are successful for your symptoms so yes Life can get better.
Have a Blessed Day
Dana

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oldkarl | @oldkarl | Jun 12, 2020
In reply to @yac53 "I have diastolic heart failure and get tired walking a short distance will this improve and..." + (show)
@yac53

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

Jump to this post

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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Mentor
Dana, Volunteer Mentor | @danab | Jun 13, 2020
In reply to @yac53 "I have diastolic heart failure and get tired walking a short distance will this improve and..." + (show)
@yac53

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

Jump to this post

@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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