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perma cath.

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4 replies to this topic

#1 paula d

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Posted 29 May 2009 - 09:44 AM

Hi everybody. Went Wednesday to get a perma cath so I can start my photopherisis. Thought it was going to be a big ordeal but it wasn't just a 15 minute procedure although I asked to be put out for it. The draw back is the daily flushing of the catheter. Will start photopherisis. next week. I am 48 years. old and am wheel chair bound and also am recovering from renal crisis. Hoping photo will help me to walk on my own again. Will keep everyone posted.

#2 shennen0820


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Posted 03 June 2009 - 11:31 AM

glad to hear that the permacath placement went okay for you...keep us posted about the photophoresis!

#3 debonair susie

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Posted 04 June 2009 - 04:50 AM

I am so glad that the perm cath went better than you had anticipated.
The unknown really can make us feel uneasy, that's for sure!

I so hope this all brings about a positive outcome for you.

When you are feeling up to it, please let us know how you are doing?
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#4 Jeannie McClelland

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Posted 05 June 2009 - 10:45 AM

Hi Paula,

How did the photophoresis go? Just great, I hope! I'd be really interested to hear all about the treatment, what it was like and so on, if you'd be willing and able to share.

Big hugs and warmest wishes,
Jeannie McClelland
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International Scleroderma Network

#5 walt



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Posted 20 June 2009 - 04:29 AM

Hello Paula:
Just some words of encouragement. I have been receiving photopherisis treatments and they have definitely helped with my skin and joint stiffness. Neither symptom has disappeared but noticeably improved. Also just my general feeling of well being has inmproved. My diagnosis came two years ago as systemic diffuse. I was 60.

I am always amazed that photopherisis in not more commonly prescribed. Maybe cost, maybe accessibility?

Please feel free to ask me questions.