Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Diastolic dysfunction and abnormal pft


  • Please log in to reply
7 replies to this topic

#1 Kathy D

Kathy D

    Silver Member

  • Members
  • PipPipPipPip
  • 242 posts
  • Location:Rocky Mountains USA

Posted 05 March 2010 - 01:56 PM

Both my first tests exactly 51 weeks ago were normal, a year later they are not.

The diastolic dysfunction is grade II. Guess this would add to my fatigue and help explain the severity.

Seeing sclero specialist in 2 weeks and normal rheumatologist in 3 weeks, I will have to wait to see what they say and how to proceed.

Feeling shocked.

Kathy
Diffuse Scleroderma Diagnosed March 2009

#2 enjoytheride

enjoytheride

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 367 posts

Posted 05 March 2010 - 04:31 PM

That is very upsetting. I hope you can get some insight from the specialists.
Til then (((hugs))))

#3 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 06 March 2010 - 01:05 AM

Its alway something isn't it Kathy. Let us know what is the next course of action. Watch and wait and see what happens? Is anything really done Y/ ou will have to keep us informed on this. I'll be wishing you the best.
Strength and Warmth,
Sheryl

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

#4 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,616 posts
  • Location:West Sussex

Posted 06 March 2010 - 06:47 AM

So sorry to read about your test results, Kathy.

Still at least you have got appointments with 2 specialists fairly soon and hopefully they can suggest a positive course of action for you.

Please let us know how you get on. :emoticon-hug:

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)


#5 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 07 March 2010 - 06:29 AM

Hello Kathy

I have had a similar experience, clean ECHO then just over a year later the ECHO showed left ventricular diastolic disfunction grade 1 and bundle branch block, both of which are caused by sclero. I am awaiting the results back from a holter test at the moment to determine whether I need to see a cardiologist for treatment.

Like I always say life with sclero is never boring, one minute you're fine and the next...you're not!

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)

#6 Vanessa

Vanessa

    Senior Bronze Member

  • Members
  • PipPipPip
  • 94 posts
  • Location:Teddington Middx UK

Posted 07 March 2010 - 08:46 AM

Sorry to hear your news and sending you loving thoughts.

#7 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 08 March 2010 - 09:04 AM

Hi Kathy,

I'm sorry about your test results. It's a good thing that at least you had baseline testing done last year, otherwise some changes are hard for them to detect. Hopefully things will be okay in the long term; sometimes our tests worsen for a spell and then even improve so the long term trend matters more (eventually) than individual tests being off.

Anyway, it's never any fun to have any test result that is less than ideal. I hope your upcoming appointments provide some more insight and perhaps even some reassurance.

Oh, but maybe they won't! I remember once (many years ago now), I lamented to my rheumatologist about the progression of some skin tightening, and she happily reminded me that nobody ever died from skin tightening, that it would most likely be my lungs that killed me. I had to laugh, because she was right, but also because I didn't care half so much about my lungs as about my skin. And then I laughed even harder when I realized that it was her well-intentioned way of trying to reassure me about the skin involvement. Which I have to say, at the time, I didn't quite find it enormously reassuring!

So I'm trying to imagine how this one will play out in your doctor's office, and what approach they might use to try to "reassure" you. Brace yourself for it! <LOL>
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.

#8 agilitygirl

agilitygirl

    Bronze Member

  • Members
  • PipPip
  • 17 posts
  • Location:Rochester NY

Posted 08 March 2010 - 02:03 PM

Kathy, So sorry to hear about how quickly things may be progressing. That can not be good news to hear. I am adding my hugs to the others. :)

Amanda, Sorry to hear you are facing uncertain time as well.

It does seem like this disease is so unpredictable. The uncertainty can really get to you :sick2: . I do like Shelley's advice though. I will try to use it as well.
Sincerely,
Gale