suze932

Heart Tissue Thickening

8 posts in this topic

Hi,

 

Has anyone been diagnosed with diastolic dysfunction of the heart muscle please?  I am breathless on exertion and fatigue seems to be gaining on me!

 

As a result of a clinical trial planned right heart catheter and unplanned left heart catheter the same day at the Royal Free, my heart muscle is apparently not functioning correctly on the left hand side due to stiffening of the tissue - diastolic dysfunction on the report.

 

Needless to say I have frightened myself to death as cyberspace classes this as part of heart failure(!)

 

As a result of the tests I am to have a specific MRI scan of the heart to ascertain whether this is caused by Scleroderma or other reasons.  I have Limited Systemic Sclerosis. query RA (tbc) and Sjogrens Syndrome. 

 

Any words of wisdom please as my MRI could be some time off and I'm sure there will be a member who has been through this themselves.

 

Thank you.

 

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Hi Suze,

 

I'm very sorry to hear that you've developed diastolic dysfunction.

 

Thankfully, I haven't experienced this myself, but I've found a link for you to another thread on the subject Left Ventricular Diastolic Dysfunction and also a couple of links to our medical pages Diastolic Dysfunction and Complications with Systemic Scleroderma Heart Involvement.

 

I think Amanda has experienced this and I'm sure she'll be along to give you some more first hand advice. Please let us know the results of your MRI scan and I do hope that the Royal Free will be able to suggest a suitable treatment plan to help you.

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Suze

 

Sorry for late reply, long story!

 

Firstly heart failure is not the end of the world, there are 4 classes of heart failure as per NHS page and I was class 3 when diagnosed in 2010 with myocardial fibrosis, diastolic and systolic dysfunction, heart failure class 3 and ejection fraction 32% with normal being 55-60%. At that time I had about 2 years to live. I had both right and left heart catheterisation and heart MRI and eventually implantation of a biventricular implantable cardioverter defibrillator (ICD) and now have a normal ejection fraction BUT technically I will always be in heart failure because without my device my heart would no longer function and I would die.

 

So you see as scary as these terms can be, heart failure, dysfunction, fibrosis, the heart is the only organ with the ability to repair itself as it did in my case thanks to my device.

 

I had all my diagnosis and treatment under the Royal Free and hopefully you will be treated by Dr Benji Schreiber Pulmonary Hypertension (PH) clinic as he is the bestest doctor! I initially refused to have the MRI as I am claustrophobic so he rang the Royal Brompton, (which is where you will have the MRI and it's a marvellous place to have it as well!) and found out that there are ways of overcoming this problem.

 

The PH clinic at the Royal Free deals with scleroderma patients with heart involvement and its held in the same dingy, small corridor as the rheumatology clinic! The doctors are excellent though and you will get the best care possible. I believe that Dr Coghlan will see you with regards to the catheterisation and again he is excellent. I can't say enough about the cardiac team at the Royal Free so you are in good hands.

 

As scary as heart involvement sounds it can be tested for and treated and the heart can repair itself so try not to worry.

 

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)

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Thanks Amanda and Joelf

 

As I suspected, an answer to my post would appear - thank you!

 

I am not scheduled until September(!) for my cardiac MRI (due to RF paperwork mix-up) but am on diuretics in the meantime and will be checked by Dr. Coghlan in May so haven't quite such a long wait as I don't even know what level of damage there is to the heart, so panic prevailed, needless to say!

I also am claustrophobic in the MRI tube but also will ask for assistance when my appointment comes around.

 

Thanks again for your explanation which was very helpful.

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Hello Suze

 

When you have the MRI lie on your stomach and go in feet first which enables you to look out into the room and your husband/partner can sit with you and talk to you. I had no problem whatsoever by doing this, it was an absolute breeze honest.

 

The more damage there is the less you can do and the more breathless you will be, in the end I would get out of breath in coversation and could not undertake any task without great difficulty and huffing and puffing. In addition to the fatigue from scleroderma I had it from heart failure and I used to have hot sweats too.

 

You are in the very best of hands and will get the very best treatment from beginning to end.

 

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)

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Hello Suze and the other members on this post!

 

I just wanted to say thank you for bringing up this topic as I am indeed having the same catheterisation procedure at The Royal Free PHT department on the 23rd of this month (April!)

 

I have Scleroderma and pulmonary fibrosis (under the care of Dr Denton and his team and The Brompton) and have in the last few months been having a lot of new heart symptoms as well as a decrease in Lung Function,now a rather measly 27% ! I am meant to be going into the Brompton to start Cyclo but have an infection (well pneumonia in fact!) and they sent me home without it last week.

 

Thank you Amanda for the reassurance that although scary, a lot is still possible!

 

I prescribe chocolate, comedy programmes, lots of rest and cuddles (my cat is very accomodating.)

 

I wish you all some peaceful times and energy and laughter!

 

Alexandra (in Surrey)

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Hi Alexandra,

 

How lovely to hear from you again, although I'm sorry that it's because you've been having  Scleroderma heart problems.

 

I also have pulmonary fibrosis and have been treated primarily at The Brompton with cyclophosphamide with The Royal Free overseeing but thankfully I don't have any pulmonary hypertension or heart involvement (touch wood!! ;) )

 

I'm sorry that you've had pneumonia (very nasty!) and have not been able to have the cyclophosphamide treatment and I do hope the your catheterisation procedure goes well on the 23rd April.

 

Please do keep us updated.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Alexandra

 

You are under the best medical care in the country at the Brompton and the Royal Free.

 

What heart symptoms are you having? Cyclophosphamide treats lung fibrosis and also heart fibrosis so should that be the source of any heart issues you've already got the treatment lined up! :emoticon-dont-know:

 

Please keep us informed and I wholeheartedly support laughter and pusscats as therapy. :woohoo:


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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