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Amanda Thorpe

Update on my ECHO results

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Hello All

 

Previously I was awaiting clarification of my echo results that showed a LV bundle branch block and LV diastolic dysfunction.

 

Well after leaving various phone messages for 2 weeks I was informed by the secretary that a letter was being sent to me stating the results were "reassuring" as no elevated pressure. I reiterated that I wanted to speak to the rheumatologist as this did not explain anything and I was far from "reassured".

 

At the time I was angry, frustrated, felt palmed off and was still none the wiser regarding the BBB and DD that weren't on my echo 16 months ago...or were they? I wasn't even sure of that and began to wonder if my first echo had shown a BBB and DD but I wasn't told. I realise that the purpose of the letter was to put my mind at rest but I did not want or need to be pacified I wanted information and to understand what caused the changes and what this could mean 16 months hence.

 

Thankfully I spoke to the rheumatologist and they confirmed that the BBB and DD were a result of the scleroderma and were not present 16 months ago. Both can be caused by lifestyle but as I have never had high blood pressure or cholesterol and prior to sclero exercised 3 to 5 times a week and ate a healthy diet the changes aren't self induced. I was actually relieved to know that all the exercise etc paid off!

 

They explained that there was now a slight stiffening of the heart (DD) and that for the BBB I needed to have an ECG to investigate this further. They explained that although these changes were caused by the scleroderma they did not necessarily effect function hence being reassuring.

 

I shall let you know how it goes and am exceeding glad to have an explanation of the echo because it means that scleroderma can affect your heart without it being "game over".

 

I now have to arrange the ECG which means another outing for "the girls". :lol:

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Amanda!

 

Way to go! I'm glad you got to talk to the rheumatologist and got an explanation. What sort of regular monitoring are they proposing? Do you have long to wait before the ECG?

 

Here's hoping for a warm room for the girls' outing!

 

Big hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Amanda

I'm so glad that you have got the information that you needed, it can be so frustrating when they brush things to one side without giving a full explanation.

After an echo I had done I was told that my heart showed stiffening but could get no real explanations from my Rheumatologist, he just simply said it's nothing to worry about. I don't think they realise just how worrying things are when you don't understand fully.

 

You take care

Jensue

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Amanda,

 

You're a great example of persistance! Keep calling until someone gets back to you with the test results AND an explanation of the results. You're doing great staying on top of things before they have a chance to go any further.

 

I've had ultrasounds of my heart in the past and it's always heartening to see my ole ticker pumping away. It just confirms that I'm still alive even if I don't feel it.

 

Good job!

 

Razz


Live well, Laugh often, Love much

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I want to tell you how very proud of you I am, Amanda!

 

You stood your ground as your own advocate and that was a great thing to do.

 

I realize that there are folks who don't require more than the letter,

contingent on the tests/concerns being given.

 

However, when it comes to the health issues many of us have going

on, we often aren't satisfied with the "letter only" notification.

 

So! You, no doubt, feel quite empowered, especially since you were taken seriously.

 

Let me just say....~Knowledge is Power~. The more we know, the better we are able to communicate/relate what we hope for from our doctors and any staff surrounding them...which also commands respect from them ;).

 

Thank you for keeping us posted, Amanda!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Razz, you're so funny, you're alive even if you don't feel it! I'm alive even if I don't look it right now! :lol:

 

Jeannie, I hope to get the ECG done within the next 2 weeks and I assume any monitoring will be decided thereafter.

 

Jensue, from what I gather, for me, the diastolic dysfunction is the heart stiffening. What happens is that when the heart is at rest, i.e. between beats, it's not fully relaxing, well that's how I understand it.

 

Susie, you're right about the knowledge thing! We can't control the disease but we want to know what it's doing to us, however insignificant it may be in the scheme of things.

 

Being your own advocate is definitely beneficial. It's not easy but pays off in the long run and I know that for future tests etc. the rheumatologist is aware that I want detailed information because I want to understand what is going on. Some are happy with being told there's nothing to worry about but as I don't worry about the disease that approach does nothing for me! Give me information any day.

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Amanda,

 

I am glad you finally received some explanations. It is frustrating dealing with doctors sometimes. Please keep us updated on your next results.

 

Lots of Hugs,

Nina Lynn

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Hey Amanda

 

Glad you got the explanations you needed, good for you! It's so much better when we understand what's really going on, I agree!


Sending good wishes your way!

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