Jump to content

Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Heart to heart?

  • Please log in to reply
4 replies to this topic

#1 fragiledancer2


    Senior Bronze Member

  • Members
  • PipPipPip
  • 44 posts

Posted 26 August 2010 - 07:07 AM

Hi Guys,

I've had diffuse for 10 years and have recently been found to have left ventricle dysfunction grade 2. I am wondering if any of you have had issues with hardening of the left ventricle, how it is being treated, etc.



#2 Sweet


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 27 August 2010 - 06:01 AM

I haven't had exactly that, but I recently had an EKG, and ECHO that showed a part of my heart was not moving correctly, (Basal septal dyskinesia) and so my primary care physician feared hardening. So he sent me to a cardiologist who did another EKG and nuclear heart scan and treadmill. It showed a "normal looking heart" and so he was not sure what to think of the previous abnormal tests. So they haven't done anything. I'll be curious to see what they do for you. Hang in there.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#3 red


    Senior Bronze Member

  • Members
  • PipPipPip
  • 96 posts
  • Location:Upstate New York State

Posted 28 August 2010 - 12:24 AM

Hi, I was diagnosed with limited scleroderma 2 years ago with mostly GI and joint issues, and my first 2 ECHO's were normal, but the last one showed "early diastolic dysfunction" - not sure if this is just one or both ventricles, the doctor explained it to me as the heart not relaxing completely between beats, but the cardiac output is still normal. No treatment was given, they just said they will watch for any worsening at my next (every 6 months) ECHO and make recommendations if and when they need to. Did your doctor start any med or recommend further testing?

#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,921 posts
  • Location:U.K.

Posted 28 August 2010 - 06:06 AM

Hello Fragiledancer

Well I have a letter saying I have severe global left ventricular dysfunction and others saying systolic and diastolic dysfunction. Per Wikipedia diastolic dysfunction is the failure of the left ventricle to properly relax and denotes a stiffer ventricular wall, which I know I have because of the myocardial fibrosis. Systolic dysfunction is the failure of the pump function of the heart and is characterised by a decreased ejection fraction which I know I have as mine is 34% of a possible 55%. I have areas of fibrosis with an overall diagnosis of myocardial fibrosis, LV bundle branch block and class 3 limited heart failure. All of my heart problems have resulted from the myocardial fibrosis which caused the LV bundle branch block and the global LV dysfunction which lead to the heart failure.

As there was no inflammation at my last check the doctor advised that this meant the fibrosis was inactive and therefore cyclophosphamide was not needed but would have been used if the inflammation and therefore the fibrosis had been active. To combat the damage done I am soon to have a biventricular ICD put in which is basically a pacemaker and defibrilator.

Now I am guessing from what you've said that you may be referring to LV diastolic dysfunction simply because this is graded as 1 to 3, 1 being mild, 2 moderate and 3 severe. Grade 2 involves moderate abnormality with shortness of breath and minor functional damage.

My suggestion is that you discuss with your doctor exactly what they were referring to and make sure you have regular follow up in place. With hindsight I am of the opinion that I should have been monitored more closely because I went from having the LV bundle branch block in February 2009 that didn't necessarily effect function to having class 3 heart failure in April 2010, there are only 4 classes of heart failure.

Take care.
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)

#5 fragiledancer2


    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 44 posts

Posted 05 September 2010 - 04:01 AM

Hi everyone-Thanks for your responses. I am on Cellcept and Micardis, and have been off and on for some time. I do have a cardiologist on the team who follows me closely. He added a cardiac rehab I do at home and my bicycle stress test improved. Although the echo showed grade 1 the stress test confirmed grade 2. My echos have not always been accurate in general.