Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


Heart MRI & catheter results...myocardial fibrosis!

  • Please log in to reply
13 replies to this topic

#1 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,925 posts
  • Location:U.K.

Posted 05 June 2010 - 04:05 AM

Hello All

So Thursday I got the results of the heart MRI and left and right heart catheter tests, I again saw Mr Superbly Superb Rheumatologist and Prof Reumatologist. The long and the short of it is that the right side of the heart is okay with the pressure in the pulmonary artery being borderline for pulmonary hypertension but this is a result of the problems with the left side of the heart rather that as a result of pulmonary hypertension. The left side hasn't fared as well but again is not as bad as first thought, well I don't think it is anyway!

My official diagnosis is myocardial fibrosis as a result of scleroderma. The left side of my heart is distended, the left ventricle dilated, my ejection fraction is 34% (normal is 55%-60%), bundle branch block present but my arteries are in good shape and there's no inflammation which means that the fibrosis is not currently active. My CRP is normal, troponin negative (positive if heart damaged) and my ANA is still negative! I don't have to have cyclophosphamide right now because it appears the fibrosis is not active and I can't tell you have relieved my poor little bladder is about that! :VeryHappy:

I asked how my heart problems fit in on the scale of mild, moderate, severe and was advised severe but despite this the left side of the heart is still managing to pump enough blood around the body, I'm not retaining fluid and the pressure in both sides of the heart is normal.

Now I wait for my appointment to have fitted a bi ventricular pacemaker and maybe also an ICD (implantable cardioverter-defibrillator) dependant on what the cardiologist thinks. Once I have the pacemaker(s) fitted and provided that the fibrosis remains inactive the whole heart issue may have no impact on my life expectancy...how about that?

As always lovin' the weird 'n' wacky world of sclero!
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)

#2 Buttons


    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 606 posts
  • Location:UK

Posted 05 June 2010 - 05:46 AM

Amanda, this sounds to be good news for you & although you may have to have these ops it all seems very positive. It must be a great relief for you to know that your fibrosis is not currently active and that your bladder can have a bit of a rest!
I hope that your cardiologists visit goes well for you.

Take Care


#3 Joelf


    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,909 posts
  • Location:West Sussex

Posted 05 June 2010 - 08:15 AM

What very good news for you, Amanda; I'm so pleased to read that your prognosis is not as bad as you feared. :emoticons-yes: I expect your bladder will be very relieved too!! ;)

A good friend of mine has had an ICD for over a year now & it has been very successful. The only problem she has had with it is if she has to go through a body scanning machine such as they use in airports; she can set the device & all the airport alarms off!!! :o :VeryHappy:
Jo Frowde
ISN Assistant Webmaster
SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#4 Margaret


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,014 posts
  • Location:Pennsylvania

Posted 05 June 2010 - 12:34 PM

Hi Amanda ,

I love to hear good news!!! Congratulations!!!

Take care,

#5 Lynnie


    Silver Member

  • Members
  • PipPipPipPip
  • 172 posts

Posted 05 June 2010 - 01:51 PM

:happy-day: I love good news and am glad some has come your way.

Long may it continue, Amanda, you deserve a break from being so higgly piggly! :bye: :VeryHappy: Keep us posted how you do, okay!
Love and hugs
Lynn xx

#6 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,696 posts
  • Location:in the Rocky Mountains of the USA

Posted 05 June 2010 - 04:39 PM

Oh my, this calls for champagne! Also flowers, chocolates, and big buckets of ice cream! Major scare, Amanda!! You'll have to excuse my excessive use of !!!!!! - I might just break into all capitals. HURRAH FOR AMANDA'S HEART, LONG MAY IT CONTINUE TO BEAT!!!!

Sorry, I couldn't help myself. We've all been so worried, kiddo.

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

#7 Sandy B

Sandy B

    Silver Member

  • Members
  • PipPipPipPip
  • 113 posts
  • Location:Abingdon, Oxfordshire, UK

Posted 05 June 2010 - 09:06 PM

Hi Amanda,

Great news, bad, but not as bad as you first feared, so brilliant, must feel like you have won the lottery!

Take care

Sandy B

#8 Sheryl


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,023 posts
  • Location:Brooklyn, Michigan

Posted 05 June 2010 - 11:42 PM

Amanda, I hope the news keeps getting better and better each step of the way. Even after the surgery that you feel better and function better than you have been. Keep us up to date as you always do with any news.
Strength and Warmth,

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#9 Deb1million


    Silver Member

  • Members
  • PipPipPipPip
  • 108 posts
  • Location:Maldon, Essex, UK

Posted 06 June 2010 - 08:00 AM

Brilliant news Amanda! :happy-day:

I hope the cardiologist soon gets your pacemaker sorted, and that your dear heart keeps beating with no further problems for many many years to come!

Hope to see you soon, take it easy. xx

#10 enjoytheride


    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 367 posts

Posted 06 June 2010 - 01:42 PM

As we Westerners say- yahoo! That is good news indeed.

#11 janey


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,113 posts
  • Location:New Mexico

Posted 06 June 2010 - 03:24 PM

I am so glad to hear so good news!!!!!! We are so lucky to be living in such a high technology age where a little pacemaker can give us our lives back. Now if we could just do something about sclero. Anything is possible.

Lots of big smiles for you.
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#12 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,624 posts
  • Location:(United States)

Posted 06 June 2010 - 03:41 PM

Well, Our Dear Amanda....

Thank you so much for giving us the results of your heart cath.

It is good that all of this is workable and that you have absorbed the information so well!

I am so very happy that you have had this cardiologist working with you! Isn't it wonderful to have that kind of rapport with a doctor?

I hope you can feel the big soft bear hugs I am sending across the ocean to you, as there are as many as you need.
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#13 sherrytrifle


    Bronze Member

  • Members
  • PipPip
  • 21 posts
  • Location:UK

Posted 06 June 2010 - 10:57 PM

Dear Amanda

Pleased to read your news is better than expected. Sounds like you're in good hands. They know so much about the workings of the heart these days. sherrytrifle

#14 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,283 posts
  • Location:Minnesota

Posted 07 June 2010 - 04:29 AM

Hi Amanda,

Well, I'm glad things are still repairable...but my, it's still an awful lot to deal with, isn't it?

I am going to send you some flowers and hugs; sometimes even our good news is bad news, even though lots of times the bad news isn't as bad as we thought it might be!

Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.