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Amanda Thorpe

Pulmonary hypertension and myocardial fibrosis?

6 posts in this topic

Hello All

 

When my rheumatologist writes to my doctor with the results of each appointment they always remember to send me a copy, which I appreciate.

 

Well I received a copy of letter about my December appointment and it's given rise to a few queries. Earlier on in the year an ECHO showed left ventricular diastolic dysfunction and left ventricular bundle branch block (BBB), it was thought neither were serious enough to effect function but I was to have an ECG to be sure. They ECG results were seen by the rheumatologist at the December appointment and as a result of which I need a 24 hour holter test.

 

The letter in question now refers to the BBB as significant whereas before it didn't necessarily effect function, does this mean it's got worse or is it just semantics? The letter also says that depending on the holter test results I may require referral to a cardiologist to rule out pulmonary hypertension (PH) and myocardial fibrosis (MF). Does this mean they currently suspect both in my case or do they rule out both for everybody just to be on the safe side?

 

I have an appointment in February and can of course get my answers then I was just curious as to how others see it. Also I had never come across myocardial fibrosis before so did an internet search and as with most things some information said it's treatable and some information said it's basically terminal. Now don't get me wrong I'm not a hysteric who now thinks she's a goner I'm just interested to know what's what. If PH and MF are suspected I would just like to know so that should either or both become a future diagnosis I was aware of the possibility and prepared for it.

 

Oh well as always life with sclero is never boring!

 

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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Hi Amanda

 

Confusing to say the least! You are remarkably calm about it all. I don't think I would wait until February, I would be tempted to call the doctor's office and ask which version is more accurate? I'm also waiting for a holter test due to irregular heartbeat.

 

Is it usual for doctors to copy letters to patients, or do you have to pay for this?

I'm waiting for my first trip to the Royal Free, as the number of overlapping autoimmune conditions keep mounting up, and I'm having a bad time at the moment.

 

Happy New Year to you and your family. I look forward to seeing you again on 16th, if its still on?

 

Take care.

Debs

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Hi Amanda

 

Sorry I have no constructive advice to offer but just hope that you will be able to get some satisfactory answers to your worries when you have your appountment in Feb. I had an ECHO but was fortunate that everything appeared to be normal (or as normal as anything to do with Sclero can be!! ;) )


Jo Frowde

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Thanks Joelf, I had a normal ECHO...once upon a time. :lol:

 

Debbie I am really sorry to hear things are bad for you at present and hopr your Royal Free visit is soon and productive.

 

The rheumatologists have always sent me copies of the letters and I don't have to pay for them. If you're not getting them I can't see why a copy can't be sent to you, free of charge, at the same time it's sent to your doctor.

 

Yes the next meeting of the UK's Scleroderma Society's Essex group is still on for the 16th and I am looking forward to seeing you then!

 

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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Hi Amanda,

 

When do you do the 24-hour Holter test? I'd want the results of that immediately, so I would.

 

Was the doctor who refered to the BBB in the recent letter the same one who previously refered to it as not serious enough to affect function? If they aren't the same, I'd lean towards semantics and individual viewpoint/experience, but if they are, I would be concerned.

 

I think that being monitored for possible pulmonary hypertension and myocardial fibrosis isn't uncommon and is a sensible precaution when there is a diagnosis of systemic sclerosis.

 

Please do not develop anything terminal or difficult to treat. I absolutely forbid it.

 

Warmest wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

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International Scleroderma Network

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Hello Jeannie

 

I'm leaning towards semantics because you make a good point, the two different descriptions did come from different doctors and it does make sense that they'd want to rule out both PH and MF as a matter of course.

 

Needless to say I have no intention of developing anything beginning with "t" and ending in "erminal"! As for difficult to treat, well I can't promise not to as I do like being described as atypical and rare! :lol:

 

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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