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Finally geting my flolan!


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#1 KarenL

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Posted 25 February 2008 - 02:06 PM

I got the call from my wonderful wonderful doctor who has been appealing my flolan case for months now with me. He finally got to actually talk to someone and they said yes! Now I have to get a PICC line and I'm dreading it. Am I being silly? My veins are so bad, the last infusion I got they had to change the IV 9 times in 24 hours. The poor little guys just shut down. Plus, I have to get iron (ferritin) infused, I'm hoping it's going to help with the sleepiness and leg cramps. Just writing this, it sounds like it's gonna be worth it but I'm a little scared. How to care for the PICC? I HAVE to do this, my one finger is about to ulcerate and another is about to turn black, both are very painful. The doctor hopes the flolan will reverse it before they get too bad. Hope he's right!

Peace,
Karen

#2 Susannah

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Posted 25 February 2008 - 07:24 PM

Hi Karen, sorry to hear about your fingers, it is so hard isnt it! I havnt had any turn black yet, but certainly know the agony of ulcers. Is a PPCI line the same as a central line or port-a-cath? If so, I got one put into my chest on the right side last April as my veins got pretty hard and painful to find, and as I was having blood transfusions so often along with iron infusions and blood tests every 2 weeks etc etc, it was the most sensible and comfortable thing to do. The operation is simple and painless, it just felt weird the first couple of days after. Unfortunately, mine had to be used immediately after it was put in and that was painful, as the area was swollen and it took a few go's for the nurses to realise the gripper needle was too short, obvioulsy needing a longer one. But sinse then, its been a Godsend. Its easy to care for, it just has to be flushed once a month, and I go to the Day Stay unit for that. Its not like going to the Lab for a simlpe 5 minute blood test anymore. I hope Im on the right track about what you were asking :lol: .
All the best Karen
Susannah x

#3 Susannah

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Posted 25 February 2008 - 10:20 PM

OOOPS....PICC not PPCI :blink: . I looked it up after I replied, should have done that first. They are a bit different aren't they! Is it going to be a permanent line? The kind like mine is known to still be in for over 10 years as long as it still works, quite amazing. Anyway, I hope it goes well. Susannah x

#4 KarenL

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Posted 26 February 2008 - 01:30 AM

Hi Susannah,

Thanks for the reply. I had a central line once that was in my neck, and was a triple thing for taking blood, putting in meds etc. This will be put in my arm I believe. Thanks for the reassurance. I just feel so awful all the time, I'm willing to try, but it just seems like another thing to take care of, and yet one more thing to explain to people that makes me feel like somethings wrong with me. I just get weary of all the care I need, wish I could be normal--ya know?
Peace,
Karen

#5 Sweet

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Posted 26 February 2008 - 08:18 AM

Oh This is great news! I know you are uneasy, but you'll be glad you did this. A PICC line is great for those with bad veins. Please let us know how you are doing with this as time goes by. :)
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)