Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

Back From My Heart Cath


  • Please log in to reply
10 replies to this topic

#1 Maddy07

Maddy07

    Senior Bronze Member

  • Members
  • PipPipPip
  • 38 posts
  • Location:Sumter, SC

Posted 10 October 2007 - 10:52 AM

Thanks to all who replied to my post yesterday. Of course the anticipation is always worse than the actual procedure. I mean I can think of 50 other things I'd rather go do lol, but it wasn't that bad. I'm home now and everything went smoothly and for that I'm thankful.

But, I do have pulmonary hypertension. Normal pressures are between 20 and 30 and mine was 80. I see my pulmonologist tomorrow and I look forward to TREATING this. We've been doing test after test for a long time so I guess that at least I have my answer and we can do something about it now.

I'm still wrapping my mind around the results. Sad, scared, glad to know finally, all at once. I also post over at phassociation.org and I know the wonderful people there will have good advice too.

Thanks for your support yesterday. I read it this morning before we left for the hospital and it was a nice way to start the day. :)

Maddy
Maddy
38 yr old mommy to 2 boys
Raynaud's, CREST diagnosed '96
Pulmonary Hypertension diagnosed Oct '07
GERD, Inefficient Esophageal Motility diagnosed Jan '09

#2 Margaret

Margaret

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 996 posts
  • Location:Pennsylvania

Posted 10 October 2007 - 01:26 PM

Hi Maddy ,

I guess it is a relief to find out and get a diagnosis but depressing at the same time. Sure hope you can get the proper treatment and start feeling better.

Take care, Everyone.
Margaret

#3 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 10 October 2007 - 01:33 PM

Hey Maddy,

I'm glad the testing is over, but I'm sure sorry to hear you have PH. There are great treatments out there, so think positive about the outcomes.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 Gizelle

Gizelle

    Senior Bronze Member

  • Members
  • PipPipPip
  • 46 posts
  • Location:Canada

Posted 10 October 2007 - 02:30 PM

Hi maddy.
Sorry about your recent diagnosis. Hopefully the doctor will control it. What are the symptoms you were having to suspect Hypertension?

#5 Patty

Patty

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 306 posts
  • Location:N.W. Connecticut

Posted 10 October 2007 - 02:48 PM

Hi Maddy,

Thanks for letting us know how it went today. I am so sorry that you have PH but at least now you know what you are up against and can start a treatment plan.

Let us know how tomorrow goes.
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#6 janey

janey

    Platinum Member

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

Posted 10 October 2007 - 02:56 PM

Maddy,
Thanks for letting us know how it went today. Sorry to hear about the diagnosis. As Sweet mentioned there are many new proven treatments out there. Here is a link to our PH treatment page. I'm taking Tracleer (Bosentan) and saw results within 6 months. I really hope you and the doctor find an effective treatment for you. Please keep us updated.

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 LisaBulman

LisaBulman

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 11 October 2007 - 12:41 AM

Hi Maddy,
You made it through the testing... yay! The anticipation is always the worst. You have a diagnosis although I am sure you would have wanted them to say everything was normal, but now you know and hopefully you and your dr will find a treatment that will work for you.

Hugs,
Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#8 Vee

Vee

    Silver Member

  • Members
  • PipPipPipPip
  • 215 posts

Posted 11 October 2007 - 01:22 AM

Maddy,

I, too, am sorry about your diagnosis. But at least now you know what your fighting! Put the gloves on, and knock 'em out!!!!! At least now you can start a regemine to start feeling better.

Postive thoughts your way!
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#9 KarenL

KarenL

    Silver Member

  • Members
  • PipPipPipPip
  • 213 posts

Posted 11 October 2007 - 02:02 AM

Revatio (viagra) is very useful for PAH. Google it and you'll see! Best of luck,
Karen

#10 Sam

Sam

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Delta, Ohio

Posted 11 October 2007 - 02:24 AM

Maddy If you need any information I can send you stuff through mail but it's up to you. Sam
Sam

#11 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 11 October 2007 - 04:27 AM

Hi Maddy,

Sure can understand your many feelings... knowing WHAT it is... a good thing, because now they know what to treat.
Take care and we appreciate your posting the results.
BTW, I'm glad it wasn't too hard on you.

Big Hugs, Susie
Special Hugs,

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