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.

I'd like to give an update. Margaret Redfield, MD, Cardiologist at Mayo Clinic, gave me a staging of Stage C, Class 3 of heart failure. I was tweeked into a treatment of Sglut 2 inhibitors by a very minor A1C level, because those have not been yet approved for diastolic heart failure. To anyone suffering with this, this medicine will help you. I am now on Farxiga. The cause of my heart failure seems to be either connective tissue disease (Mayo Clinic favored.) or the treatment of that by Plaquenil, which my local Cardiologist, Garrick Stewart, of the Brigham & Women's Hospital in Boston, thinks is a distinct possibility, given recent compelling case studies. The only way to rule out the Plaquenil is another heart catheterization to take for samples of heart tissue to review under an electron microscope. I am leaning towards this because I need to keep Plaquenil if it is helping me or stop it if it is the cause!

But I have cold feet about another heart cath procedure!

REPLY
@tcokeefe

I have just been diagnosed with diastolic heart failure. I am 70 years old, female and have been having shortness of breath and coughing for quite some time. The shortness of breath for the past few years but increasing lately, thus the echocardiogram and diagnosis. I am absolutely terrified because it looks as if five years is the survival for about 50%, and after that it drops off sharply. I would love to hear from some female people with this condition. Thanks for any input

Jump to this post

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

REPLY
@imhart

I'd like to give an update. Margaret Redfield, MD, Cardiologist at Mayo Clinic, gave me a staging of Stage C, Class 3 of heart failure. I was tweeked into a treatment of Sglut 2 inhibitors by a very minor A1C level, because those have not been yet approved for diastolic heart failure. To anyone suffering with this, this medicine will help you. I am now on Farxiga. The cause of my heart failure seems to be either connective tissue disease (Mayo Clinic favored.) or the treatment of that by Plaquenil, which my local Cardiologist, Garrick Stewart, of the Brigham & Women's Hospital in Boston, thinks is a distinct possibility, given recent compelling case studies. The only way to rule out the Plaquenil is another heart catheterization to take for samples of heart tissue to review under an electron microscope. I am leaning towards this because I need to keep Plaquenil if it is helping me or stop it if it is the cause!

But I have cold feet about another heart cath procedure!

Jump to this post

Hello @imhart,

I'm pleased that you posted this update. As I also have diastolic dysfunction, I would be interested in knowing what your ejection fraction is. On reports, it often shows up as EF.

Also, I'm wondering what symptoms you might have, other than the pain you mentioned.

In what way has the new meds helped your symptoms?

REPLY
@imhart

I'd like to give an update. Margaret Redfield, MD, Cardiologist at Mayo Clinic, gave me a staging of Stage C, Class 3 of heart failure. I was tweeked into a treatment of Sglut 2 inhibitors by a very minor A1C level, because those have not been yet approved for diastolic heart failure. To anyone suffering with this, this medicine will help you. I am now on Farxiga. The cause of my heart failure seems to be either connective tissue disease (Mayo Clinic favored.) or the treatment of that by Plaquenil, which my local Cardiologist, Garrick Stewart, of the Brigham & Women's Hospital in Boston, thinks is a distinct possibility, given recent compelling case studies. The only way to rule out the Plaquenil is another heart catheterization to take for samples of heart tissue to review under an electron microscope. I am leaning towards this because I need to keep Plaquenil if it is helping me or stop it if it is the cause!

But I have cold feet about another heart cath procedure!

Jump to this post

This is so interesting to me - I just had a physical and my blood sugar or whatever that marker for diabetes is, was a little over the normal range.... I'm going to ask about Farxiga! Thanks - new info is SO important! I'm already on Spirolactone but never heard of Farxiga!

REPLY
@imhart

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

Jump to this post

But so many fruits and veggies (including citrus, I thought?) are discouraged while on Spironolactone because of high potassium content! I'm still struggling to find out what I can eat!

REPLY
@imhart

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

Jump to this post

I just googled Farxiga and found this, which means it wouldn't apply to someone with preserved ejection (me):The Food and Drug Administration has accepted a supplemental New Drug Application and granted Priority Review for dapagliflozin (Farxiga) for the reduction of risk of cardiovascular death or worsening of heart failure in adult patients with heart failure with reduced ejection fraction (HFrEF).

REPLY
@tcokeefe

But so many fruits and veggies (including citrus, I thought?) are discouraged while on Spironolactone because of high potassium content! I'm still struggling to find out what I can eat!

Jump to this post

Dr. Redifield told me to eat "lots of fresh fruits and vegetables" and she prescribed Spirolactone to me.

REPLY
@hopeful33250

Hello @imhart,

I'm pleased that you posted this update. As I also have diastolic dysfunction, I would be interested in knowing what your ejection fraction is. On reports, it often shows up as EF.

Also, I'm wondering what symptoms you might have, other than the pain you mentioned.

In what way has the new meds helped your symptoms?

Jump to this post

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.

REPLY
@tcokeefe

This is so interesting to me - I just had a physical and my blood sugar or whatever that marker for diabetes is, was a little over the normal range.... I'm going to ask about Farxiga! Thanks - new info is SO important! I'm already on Spirolactone but never heard of Farxiga!

Jump to this post

The Farxiga study was just published. I'm really only on it because of the diastolic heart failure, but it has not yet been approved by the FDA for that. It really has helped me so I would recommend trying it.

REPLY
@tcokeefe

I just googled Farxiga and found this, which means it wouldn't apply to someone with preserved ejection (me):The Food and Drug Administration has accepted a supplemental New Drug Application and granted Priority Review for dapagliflozin (Farxiga) for the reduction of risk of cardiovascular death or worsening of heart failure in adult patients with heart failure with reduced ejection fraction (HFrEF).

Jump to this post

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.

REPLY
Please sign in or register to post a reply.