emmie

Heart Question

8 posts in this topic

Hello Friends,

 

What does the term stiff heart mean? Or maybe I mean What does it mean when someone says my heart is getting stiff? That doesn't sound quite right....Does anyone know what I mean?? :P

 

If you do, What does it mean, how is it diagnosed, is it a product of sclero, etc?

 

Thank you!

 

xoxo emmie

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Hi Emmie,

 

Here is a link to a page from the Sclero A to Z site on cardiac involvement. You will notice a ways down the page a section labeled "aortic stiffness" and several articles under that section. I hope this provides you with some helpful information.

 

Warm wishes,

Heidi

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Hi Emmie,

 

I have Left Ventricular Diastolic Dysfunction meaning that the left side of my heart is stiffening. This was found when I had a heart cath done looking for PAH. I do not have PAH but the dr that did this was very good and checked my left side and foud this.I now take a BP / water pill to try to keep it in check. I hope this answeres some of your questions.

 

Hugs,

Patty


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

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Thanks Heidi and Patty. My question was prompted by my last echo result which reported left ventricular global dysfunction. The ejection fraction was at 45% (down from60% 2 years ago). I can't remember the systolic and dyastolic numbers right now.

 

I did see a cardiologist. I had a nuclear stress test; think I did ok altho 5 people were literally holding me up while I moved my legs. It was like a bad cartoon! At the end, I guess they had someone standing there ready with a chair to put on the treadmill so I could plop on it. From there, they transferred me to a bed (where I secretly had tears in my eyes from sheer exhaustion and I don't know what else)! But hey, this girl did it. I got my heart rate to the target number!!! I am nothing if not determined. Anyway, I am still waiting on a hard copy of the results.

 

They are chalking my shortness of breath up to the mild to moderate ILD, this "heart thing" whatever it may be, and physical deconditioning (thank you very much). That is what led to my curiousity about stiff heart. I do have some sclerotic thickening of one of the valves and some mitral valve regurgitation. I appreciate your help.

 

xoxo emmie

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((((((Emmie))))

Will you be having a heart cath done? I think thats the best tool to really get in there and see whats going on. I really was a lucky one that the dr I had that was only supposed to do a right side one, went ahead and did the left side also.

 

I give you kudos for doing the tests and getting your heart rate up to where they needed it to see what was going on!! I know me, I could not have done it at this point in my life. I did do it a few years ago and just bearley finished! Keep me posted on things with you.

 

Hugs,

Patty


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

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Hi Emmie,

 

Wow! That test sounds tortuous! I am so sorry that now it seems like something is going on with your heart. Please do keep us posted and let us know what your test results show.

 

Warm wishes,

Heidi

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Emmie,

I see that Heidi and Patty have answered your question, so I'm just here to give you a ((((((((((((((big hug)))))))))))))))). You nuclear stress test doesn't sound like it any fun at all, but you DID IT! You go girl. When I had mine don't, I actually wanted to get on the treadmill, but instead they gave me the injection that simulated exercise.

 

I hope they narrow down what's causing your shortness of breath. A mild ILD can certainly be the culprit. Have you had a high resolution cat scan of your lungs?

 

Keep us posted.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hey friends,

 

Thanks for your concern; I didn't mean to cause a stir. I'm not really concerned because the cardios and pulmos dont seem to be. No right heart caths scheduled. The plan for now is pfts with 6 minute walks every 6 months and another echo in June. I think I"m also due for a CT at that time as well.

 

So, I'll be picking the new rheumatologist's brain (who I will finally meet in a couple of weeks) for a pulmonologist and from there most likely a cardiologist.

 

On another front, I finally broke down and saw a psychiatrist. They have been advising me to for some time. The Hashimoto's encephalopathy that I have brings depression and other issues with it. It was the best thing I could have done. My neuro had been prescribing antidepressants, but this dr. adds a new dimension of understanding that is good for me. The moral here is, if doctors recommend something, try it. They might be right!!! (My hard headed stubborness got in the way. It served me well on the treadmill, but not here!)

 

Anyhoo, That's my news for now---oh,no it's not, but I'll start another topic....again. Thank you. You folks "get it" like no one else!

 

xoxo emmie

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