Jump to content


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


Photo

Very busy week...


  • Please log in to reply
7 replies to this topic

#1 LisaBulman

LisaBulman

    Platinum Member

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

Posted 18 April 2008 - 02:07 AM

Hi everyone,
I thought I would give everyone an update on my study so far. On Monday I had another pft (that is my second one this month and I have another one next week) and a skin biopsy. The biopsy hurt...a lot! They did use an anesthetic but it didn't work that great. :( I have a stich in my forearm, on the under part and it is pulled really tight so it still hurts. On Tuesday I had my first infusion (hopefully not the placebo!) and it was uneventful, which is great because that should lay the groundwork for my next two. Right before you have the infusion, they draw blood. The infusion lasts about two hours. 1/2 hour after the infusion, they draw blood as well as two hours, four hours, eight hours and twenty four hours. They moved me from the research center to the hospital around 4pm (to a private room, thank goodness) and I just relaxed for the evening. In the morning I had my twenty four hour blood draw and I went home. Then on Thursday morning I had to drive back to Boston to have my forty eight hour blood draw. Exhausting! I have a week off, then more labs next week along with a pft and my stich out of my biopsy.

Hope this is all worth it!!

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)

#2 debonair susie

debonair susie

    Platinum Member

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

Posted 18 April 2008 - 02:48 AM

Well Lisa,

One week down... There's alot involved, isn't there? Are you always going to have a week off in between?
Please forgive my FOG... but did you say how long this will take?

Oooch... getting poked as much as you did, I'll bet you felt like a pin cushion! :blink:

Thank you for the run down of your week. Here's hoping your weekend and week ahead are relaxing for you!

Hugs, Susie
Special Hugs,

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

#3 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 18 April 2008 - 06:59 AM

Wow you are terrific. I'm not so sure I would be willing to go through all of this. *hugs*
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 janey

janey

    Platinum Member

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

Posted 18 April 2008 - 09:01 AM

What a week! Did they put in a PICC line for the infusion and all the bloodwork? If not, sounds like a lot of poking. Hopefully you have good veins. Do you get to see the results in a timely manner of the pfts and bloodwork or do you have to wait? Sorry all the questions.

My fingers are still crossed that you're getting the meds and not the placebo!

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)

#5 Snowbird

Snowbird

    Platinum Member

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

Posted 18 April 2008 - 09:50 AM

Hey Lisa

You're doing just great by the sound of it...even though it's very tiring and tough on you! I sure hope you get the real med's too and that they help a ton!! Do you have any hint as to how long it might take to work on you for it be noticeable...if you are getting the real stuff??

You are doing a wonderful thing for science/research and for everyone afflicted with this disease!

I wish you good luck!
Sending good wishes your way!

#6 LisaBulman

LisaBulman

    Platinum Member

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

Posted 18 April 2008 - 12:59 PM

Susie,
The study is a total of 31 weeks. All of my infusions, skin biopsies and bronchoscopies are done with by June.

Janey,
They did insert a line. Although I have very good veins it was just a bit too much to be stuck in one day. I get all of my pft results immediately. There was no change since the last one, but that was only a week ago. I don't see any of the labs... they just keep saying they look good. The most important one they are getting is the PK.

Snowbird,
I have no idea how long it will take but I hope it is fairly quickly!

Being in this study or any of them that I have been in, is just an awesome experience. I'm hoping I am blazing the way for great things for all scleroderma patients. On top of that you get the best medical care possible. In two weeks time I have had a skin biopsy, bronchoscopy, 2 pft's, labs and have seen three specialists! Outside of a study it would have taken atleast three months to coordinate all of that. :)

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)

#7 Cheri

Cheri

    Senior Bronze Member

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

Posted 18 April 2008 - 07:26 PM

Hi Lisa,

I just want to say a big thank you for participating in the study. It sounds like you are going through a lot. I hope during your week off you'll have some time to relax.

Hugs,

Cheri

#8 debonair susie

debonair susie

    Platinum Member

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

Posted 19 April 2008 - 05:27 AM

You rock, Lisa :rolleyes:

I thank you for what you are doing and it IS my hope this will be able to help others, with their findings.

It is my hope that once this is completed, you will be able to enjoy the summer months :)


Big, soft hugs,

Susie
Special Hugs,

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