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Another Individual Diagnosis - Grade 2 Diastolic Dysfunction


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#1 Wilson

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Posted 22 June 2016 - 10:00 AM

The reason I joined this site a few days ago was my recent echocardiogram which seemed to me to suggest diastolic dysfunction. The only thing was that the doctor who performed that echo did not have a lot of knowledge on diastolic dysfunction and therefore never diagnosed me with it - even though the details of the echo report seemed pretty clear. Now, however, I saw my regular cardiologist who said definitely I do have Grade 2 Diastolic Dysfunction based upon a review of that echocardiogram. This may sound strange to some, but I am relieved to have yet another individual diagnosis. (I am not relieved to have Diastolic Dysfunction but if I have it, I at least want it to be "official.") So, although I still have no underlying diagnosis of scleroderma, I now have another "individual diagnosis" to add to my list of Raynaud's, reflux, arrhythmias, etc.

I'd welcome visiting with anyone who has been diagnosed with Grade 2 diastolic dysfunction. I think I saw that "KathyD" has been living with this for a while? Kathy, if you are reading this, I'd like to hear more about your situation and if the DD has progressed at all, what your symptoms are, what medications you take for it, etc. And, please, if there is anyone else out there with DD, let me know what your situation is. It would be nice to know if a person can live with this for a long time as that is the goal of all of us!!

Take Care,

Wilson.

#2 Joelf

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Posted 22 June 2016 - 07:28 PM

Hi Wilson,

Sorry to hear that you have another diagnosis to add to your collection.

Thankfully, my heart is as sound as a bell, so I can't offer you any first hand advice, but I'm sure we will have other members who will be able to share their experiences with you.

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#3 Shelley Ensz

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Posted 23 June 2016 - 02:30 PM

Hi Wilson,

 

I'm sorry you also have diastolic dysfunction. It's one of those things that is quite common, in that a Mayo Clinic study showed that 21% of people over age 45 have it; and, it can also occur in scleroderma (which is a more rare cause of it, because scleroderma is much more rare, of course.)

 

It's a good thing to get diagnosed, and to take proper care of. It can be caused by coronary artery disease or by hypertension so those factors are often treated with blood pressure medications, diuretics, and sometimes even aerobic exercise to improve heart function. Keep on working with your cardiologist, of course.

 

As I understand it (and I am not a doctor; I have no medical training at all), there is no different treatment for it, even if scleroderma is an underlying cause.

 

I know how you feel about not wanting to have any particular diagnosis, but being glad to have any accurate diagnosis. Simply because, it's accurate and true!  And who knows, maybe someday various things may help solidify an umbrella diagnosis.

 

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#4 Wilson

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Posted 24 June 2016 - 04:15 AM

Thanks Jo and Shelley,

I appreciate your thoughts. Yeah, I know Shelley - yet another individual diagnosis but still no "smoking gun" proving scleroderma. Yet I have none of the other typical risk factors for diastolic dysfunction (DD) - not overweight, no hypertension, no coronary artery disease, etc. Yes, I believe you are correct though in that DD would not be treated any differently whether we knew it was related to scleroderma or not. In fact, I believe that is generally true of most of the manifestations of scleroderma - that for the most part they are not treated any differently than if they were not caused by scleroderma. But, as you mentioned, I too am no doctor or medical professional so all I know is what I can read from the internet.

Oh well...just gotta keep chugging along! Thanks again for your comments and for this great site.

-Wilson.



#5 Amanda Thorpe

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Posted 24 June 2016 - 08:18 AM

Hello Wilson

 

Welcome and I get that want of an overall diagnosis of something. Needless to say no one wants a diagnosis of any disease but we all want to be able to hang our symptoms on something so we can make sense of them as well as know whether anymore could appear and if so what they might be and what they might do to the body we inhabit!

 

For information purposes, the cause of a symptom can make a difference to treatment, progression and outcome, an example of one such symptom is pulmonary hypertension (PH).

 

Back in 2010, I was diagnosed with myocardial fibrosis and class 3 heart failure. I started out with a left ventricular bundle branch block, which involves the electrical impulses of the heart, I had grade 3 diastolic dysfunction and eventually global dysfunction as the entire heart became affected. I received my diffuse systemic scleroderma diagnosed in 2007 and had no internal organ involvement at that time, only 3 years later I developed myocardial fibrosis and heart failure which at the time brought my life expectancy down from at least 10 years to 2. I had a *biventricular ICD fitted and within two years my **ejection fraction went from 32% to 55% which is normal.

 

Even when things nose dived for me, treatment was possible and thankfully successful. Scleroderma is so unpredictable but there are so many treatment options now, even when things change for the worse and change quickly, it ain't over 'til it's over!

 

Take care and keep posting.

 

* it's a pacemaker and defibrillator in one

**ejection fraction measures the function of the left side of the heart which pumps blood around the body


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#6 Wilson

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Posted 27 June 2016 - 06:53 AM

Thanks Amanda for that information about yourself.  I am confused on one thing though:  was your diastolic dysfunction caused by the electrical problems directly or by stiffening of the heart?  I thought what typically happened with Diastolic Dysfunction is that the heart muscle stiffened and therefore did not function as well thus causing poor filling and diastolic dysfunction.  I thought in this scenario that diastolic dysfunction was not reversible.  But, in your case the diastolic dysfunction sounds like it did indeed improve.

 

-Best Wishes, Wilson.

 

P.S. - Your cat looks like a nice guy/gal!  :lol: