Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

I start my new 24/7 drug Tommorrow


  • Please log in to reply
14 replies to this topic

#1 LadiDi

LadiDi

    Newbie

  • Members
  • Pip
  • 6 posts

Posted 31 August 2009 - 10:30 AM

I found out this morning that I will be admitted to ICU tomorrow morning and they'll start this new breathing drug little by little by regular IV until it is up to the level they hope I will tolerate 24/7 in a catheter in my chest connected to a cassette filled with sterile mixed drug that I will change once every 24 hours and cary on my side with ice packs 24/7. I will be in the hospital 4 days.

once I come home I'lll be back and let you know how it is going.

#2 janey

janey

    Platinum Member

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

Posted 31 August 2009 - 10:40 AM

LadiDi,
I just read your first post and now this one. Our thoughts will be with you while your in the hospital. I hope the infusion is uneventful and the treatment effective. Sounds like you need something to start working for you. I hope this is it. I look forward to hearing how you are doing once you get home.

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)

#3 lizzie

lizzie

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 497 posts
  • Location: UK

Posted 31 August 2009 - 10:59 AM

Hoping all goes well for you

lizzie

#4 LisaBulman

LisaBulman

    Platinum Member

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

Posted 31 August 2009 - 12:13 PM

LadiDi,
Good luck with the infusion. Like Janey said I too hope it is uneventful and all goes well. Please keep us posted!

I'll be thinking about 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)

#5 Deb1million

Deb1million

    Silver Member

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

Posted 31 August 2009 - 12:46 PM

Good luck Di!
Let us know how it goes, hope you're not too bored in there! - you are probably glad to get a rest, so make the most of the enforced rest and try to relax
gentle hugs to you!
Debs B

#6 smac0719

smac0719

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 377 posts
  • Location:Tampa, FL

Posted 31 August 2009 - 01:47 PM

LadiDi,

Best wishes and you will be in my thoughts!
I may have Scleroderma, but Scleroderma doesn't have me!

#7 Snowbird

Snowbird

    Platinum Member

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

Posted 31 August 2009 - 02:15 PM

Hi LadiDi

I just read your previous post as well and also want to wish you good luck with your treatments.
Sending good wishes your way!

#8 warmheart

warmheart

    Silver Member

  • Members
  • PipPipPipPip
  • 109 posts

Posted 31 August 2009 - 02:43 PM

Dear Di,

Hoping all goes well for you, and that with the Flolan you'll be feeling much better very soon.

Hugs,

warmheart

#9 KarenL

KarenL

    Silver Member

  • Members
  • PipPipPipPip
  • 213 posts

Posted 03 September 2009 - 03:52 AM

Sounds like Flolan. Not a new drug, but new to you. I have used it for for Raynauds and it doesn't work so well for that, but continuous for PAH it's supposed to be great. You will feel hot and flushed at first, the nurse will sit with you for at least a half hour to make sure you're okay. The port is a little uncomfortable at first but you get used to it. Give the whole process some time, because it's a little weird at first, you will get used to it.

Karen

#10 Sheryl

Sheryl

    Platinum Member

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

Posted 03 September 2009 - 09:50 AM

LadyDi, I hope you have great success with this new treatment. Please keep us informed on your well being.
Strength and Warmth,
Sheryl

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

#11 LadiDi

LadiDi

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 6 posts

Posted 08 September 2009 - 10:24 AM

I am home, got home Sat.night. The side effects are horrible. headaches, severe nausea, jaw pain and flushing. each day they want to raise my dosage. The side effects subside over time but then each day they raise and they come back. They say eventually they will go away all together when I get to a high enough rate. So, I am still needing a lot of help at home mixing my daily does of Flolan and changing my cassette on my pump every morning. I am very weak overall.

Thank you all for all of your encouragement.

#12 Sheryl

Sheryl

    Platinum Member

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

Posted 08 September 2009 - 11:53 AM

LadyDi, I am happy to hear that you are home and did well. It's good to know that someone is there helping you mix your Flolan and help you out until you gain some strength. Hopefully, you will continue to have help offered even after you are feeling better so that you can rest and regroup. Thank you for keeping us informed on your well being. Hugs, B)
Strength and Warmth,
Sheryl

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

#13 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 09 September 2009 - 10:18 AM

Hi LadyDi,

Oh, that all sounds awful, the side effects you are having. It's nice knowing that it will get better eventually, but my goodness, that's a lot to accommodate. Are you just totally wiped out at this point, or able to do a few things now, like read magazines or a book? When do they say the worst of it will be over for you?
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.

#14 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 09 September 2009 - 11:42 AM

Hello LadiDi

I am glad you're home and that you have help. When we feel sick :( because of the medication it's very difficult to think long term, we want immediate relief and why not? You know you're in this for the long haul and as you say the side effects should become tolerable at some point. I hope they do soon and that you get the desired effects from the drug in the long run.

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)

#15 LisaBulman

LisaBulman

    Platinum Member

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

Posted 10 September 2009 - 03:35 AM

Hi LadyDI,

I'm glad you are home and that you can at least tolerate the side effects. Hopefully they will subside sooner than later!

Please keep us posted.

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)