Stiff Heart - diastolic heart failure

Hello @imhart and welcome to Mayo Connect.

I'm pleased to hear that you were at Mayo for a heart cath and received a definitive diagnosis. I can understand your interest in Entresto. In order to find out about the clinical trial, you might contact Dr. Redfield's office staff and ask them if there are still openings in the trail. I'm sure that they could assist you with that information.

If you care to share more, what were your symptoms that led to the heart cath and the diagnosis of diastolic heart failure? I'm just wondering if you had shortness of breath, chest pain or inability to exercise.

I saw Dr. James Utz, a Senior Pulmonologist at Mayo, for those symptoms, which had progressed insidiously over many years. I was flying in from the Boston area so I had to make multiple visits over time to get to see him. (Initially my local Rheumatologist wrote a referral letter to be seen by Rheumatology at the Mayo Clinic.) He asked the right questions and listened well. He referred me to the heart failure group. I failed the special cardio-pulmonary stress test they do. Dr. Margaret Redfield recommended the heart cath to definitively diagnosis this. I also had symptoms of edema in my lower legs with some pitting, edema in face and neck, and specifically severe pain intermittently below and beneath my left scapula, which I understand could be a referred pain from the heart muscle. I also participated in a study that Dr. Robert Frantz is directing. It is believed that my MCTD is the cause of the "stiffening." I wish I'd known about this a long time ago but grateful that I finally have answers now.

I appreciate your sharing your rather complicated history of getting a diagnosis of heart failure, @imhart. I'm sure you are glad to finally have a diagnosis after searching for an answer for so long. If you care to share more, what meds are you currently taking?

For the heart failure Dr. Redfield prescribed two diuretics—spirolactone and hydrochorothyozide. She said that treatment of the MCTD is key though. I've been on Placquenil for a long time and Advil as needed. Methotrexate is being considered.This is a systemic illness and I have a lot of other issues in different systems.

p.s. Dr. Redfield said that she would recommend following up with her in about a year. She also said that if I was glucose intolerant I should see if my provider here would prescribe an SGLUT2, which is showing a lot of promise in the treatment of heart failure.

Is glucose intolerance a problem for you as well, @imhart? I'm also wondering if there is a history of this type of health problem in your family?

Not really. I'm just below the cut off for glucose intolerance, apparently. All that Dr. Redfield was trying to do was to say if I am glucose intolerant then she hopes that a provider would give me the SGLUT2 type med because it is showing promise for heart failure. There's a big study going on now and she believes it will probably be utilized just for heart failure patients in the future. It's currently only approved for diabetes.

There is a history of congestive heart failure on one side of the family, but they only got this in their late 70s not early 50s like me. I would like to connect with others on this forum who have been given a diagnosis of this at a relatively young age and caused by autoimmune connective tissue disease. Though I must say my local Rheumatologist did not know how my Mayo Clinic team would know that MCTD caused the heart stiffening. So, I am trying to find out as much as I can in order to know if that's the case and the experience of others in a similar place.

Hi @tcokeefe. I am a 67 year old female who was diagnosed with diastolic heart failure 5 years ago. I know the feeling you are experiencing. I’ve been told by my cardiologist and an electrophysiologist, that the 5 year mark is not accurate. It all depends on the person. I’m hoping to see my grandchildren grow up. I try to exercise and eat
right. I am in Afib all the time now but my meds seem to be helping, at the moment. I try not to read too much on the internet but searched all I could the first year or so. Good luck to you. Wishing you a Happy, healthy New Year!!👍🏻

don't worry that much !!! the diastolic heart failure involves the left chamber of your heart, mostly due to a thickness of the wall after a long undiagnosed hypertension. the main factor for the prognose is the EF, that means ejection fraction of the left chamber. and of course the hypertension should be treated. If the left atrium is enlarged ( because of the diastolic failure, more blood in the atrium) the mitral valve can become insufficient. even then there is a solution ,as the cardiologist will put a mitral clip around the valve (no operation, katheter)
yoanne