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.



  • Please log in to reply
4 replies to this topic

#1 paula d

paula d


  • Members
  • Pip
  • 7 posts

Posted 13 May 2009 - 08:33 AM

Finally got the okay from the insurance for photopherisis. I'm gonna have to get a permanent catheter and am still looking for anyone that has gotten one and has any information on the procedure? Will try to keep posted on progress of the perma cath and photopherisis.

#2 shennen0820


    Senior Bronze Member

  • Members
  • PipPipPip
  • 50 posts
  • Location:Watertown, Connecticut

Posted 16 May 2009 - 03:09 PM

Hey Paula,

I'm glad to hear the the insurance company approved your treatments. Check with Walt. I know he has been having photophoresis treatments and is from Canada I believe. Are you going to be having your treatments at Yale? I think you said you live in Connecticut as well.

#3 Shelley Ensz

Shelley Ensz

    Root Administrator

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

Posted 18 May 2009 - 12:55 AM

Hi Paula,

Congratulations on getting your photopheresis treatments approved! I am very excited for you. Please keep us posted on how they are going.
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.

#4 paula d

paula d


  • Topic Starter
  • Members
  • Pip
  • 7 posts

Posted 18 May 2009 - 07:43 AM

Yes, very happy about treatment but have to get a permacath. a little worried about the permacath one day surgery. I live in New Milford and am going to Yale.

#5 debonair susie

debonair susie

    Platinum Member

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

Posted 21 May 2009 - 05:50 AM

paula d,

I'm also very glad that you are able to get treatment.

It does sound like you will be in good hands, in regard to the permacath...going to Yale.
Please keep us posted on how you are doing?

In the meantime....{{{{Big Soft Hugs}}}} at your disposal whenever you feel you need them!
Special Hugs,

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