Jump to content


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


Photo

Diastolic Dysfunction


  • Please log in to reply
8 replies to this topic

#1 MicheleM

MicheleM

    Silver Member

  • Members
  • PipPipPipPip
  • 119 posts
  • Location:Atlanta, GA

Posted 23 January 2008 - 10:22 AM

Hi all. Had a follow-up pulmo visit this am. Looks like the culprit of a good deal of my symptoms of shortness of breath (especially during exertion), lack of energy, up & down blood pressure and a few other assundry symptoms (don't want to bore you :P have diastolic dsyfunction as a common denomonator! I wasn't too impressed at the time B) of course that was before I started reading about it. :blink: He thinks it's sclero induced and wants me to see a new rheumatologist that specializes in sclero at Crawford Long (Emory Univ.) in Atlanta. That will be in April (no big rush here!) and see him again in May. He talked about meds, but deferred to the rheumatologist's opinion since I've not done too well on the bp meds (make me really tired) and I've done pretty good without. However, from my reading it looks like a new med will be added to my list of "to dos" in the near future. I'm glad to have the diagnosis which came from the "painful" & thorough Echo, but, am sad really to learn that what I thought might be the problem is the problem. It's easier to wrap your head around when you "think" something rather than "know" something :unsure: ANYWAY .. it is what it is & I continue to be thankful I have another day to enjoy! Keeping a good attitude has served me well & positive attracts positive so I'll just keep that going!
Soft hugs your way,

Michele

#2 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 23 January 2008 - 11:39 AM

Hi Michele

It's never easy, that's for sure...and it is sad to hear that is the problem but I hope you can keep your good attitude in all this, I agree, it helps.....and just take it one day at a time. Good luck with your appointments.
Sending good wishes your way!

#3 Annie N

Annie N

    Senior Bronze Member

  • Members
  • PipPipPip
  • 79 posts
  • Location:Connecticut

Posted 26 January 2008 - 07:38 AM

Hi Michelle.
I recently received the same diagnosis altho not all of the doctors agree. In any case I was put on a med called aldactone to relax the valve to allow more blood to flow. (at least that's what I understand about all of this).. However, I must add that the heart doctor who I went to for a second opinion thought it was my lungs whereas the sclero doctor said it was the heart.
Anyway, I do think the aldactone does help, where as I haven't felt any effect of the revatio they also put me on - I'm still battling a fairly large ulceration and feeling extremely cold even on it.
Also the sclero doctor said he feels that the diastolic diagnosis is probably more common with sclero that realized. I'm not sure how that impacts the affect on me, but...
I wish you good luck and please keep me posted.
Also, I was just wondering who else in the has heard this diagnosis. I asked once before and only one person responded.
Stay warm.
Annie N

#4 Cheri

Cheri

    Senior Bronze Member

  • Members
  • PipPipPip
  • 74 posts
  • Location:Sequim, Washington

Posted 26 January 2008 - 02:21 PM

Hi,

I just had my first echocardiogram and it came back saying diastolic dysfunction too. Plus all my valves say mild regurgitation, whatever that is. I haven't seen the doctor since I got a copy of the report because I'm seeing a sclero specialist in February. I did read on the Internet after I got my report, that they are finding diastolic dysfunction is more common than thought with sclero.

I wish you both the best.

Hugs,

Cheri

#5 MicheleM

MicheleM

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 119 posts
  • Location:Atlanta, GA

Posted 30 January 2008 - 10:49 AM

Well, it's nice to not be alone, but I knew you guys were out there! Thanks for the support! I did the reading on line as well and found that sclero patients seem to be more prone (DUH!) thanks to that good old friend, collagen! I see the sclero specialist April 1 & we'll see what she thinks! Until then, nothing new in my routine, except maybe a little more help from hubby - like today when he went grocery shopping & pushed the cart! He used to go all the time & slacked off, but offered today & I'm not craxy enough to turn that down! :P

Anyway, hope y'all are having good days & lots of smiles!!! :rolleyes:
Soft hugs your way,

Michele

#6 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 30 January 2008 - 04:38 PM

Michele,
Did you see the newsroom article

Evaluation of cardiac abnormalities by Doppler echocardiography in a large nationwide multicentric cohort of patients with systemic sclerosis.

One of this study's conclusions is "Left and right heart diseases, including PAH, LV hypertrophy and diastolic dysfunction, are common in SSc. "

Yes, our good friend collagen is most likely the culprit. My cardiologist says that some of my heart problems are due to sclero and some due to the lungs problems.

Cheri, valve regurgitation is when blood that has already passed through the valve returns to where is came from (similar to gastroreflux). I have quite a bit of regurgitation in my mitral valve because that's where my pacemaker wire passes through to my right ventricle.

It's always good to catch these types of things early so you can keep track of them.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#7 Cheri

Cheri

    Senior Bronze Member

  • Members
  • PipPipPip
  • 74 posts
  • Location:Sequim, Washington

Posted 02 February 2008 - 11:03 AM

Hi Janey,

Thank you for your reply. I wondered what valve regurgitation was. Do you have aortic valve thickening too?

Hugs,

Cheri

#8 MicheleM

MicheleM

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 119 posts
  • Location:Atlanta, GA

Posted 02 February 2008 - 01:05 PM

Thanks Janey! I did read that article ... I think looking at the PAH segment. Thanks for the info. I always find it interesting how I miss info when not directly looking :blink: I'd been told years ago that I had "something" going on, but no definite conclusions till the DD findings on the Echo. One good thing about a finding is the "rest of the world" listens when the dr. talks (however finding one who listens & looks is the hard part!) Thanks to all for being here to "talk" to & know someone understands & cares! :D
Soft hugs your way,

Michele

#9 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 02 February 2008 - 04:07 PM

Cheri,
My ECHO report said "insignificant valve stiffness". So the way I would interpret that is it's there, but nothing to worry about. :blink:

I had my six month ECHO last week but haven't received the report yet. Hopefully, I'll get a copy next week and they'll be nothing new to report.

You're most welcome Michele. We all support each other here. That's why we keep coming back.

Big Hugs to all,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)