Suffering with Raynauds & Scleroderma... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Suffering with Raynauds & Scleroderma, I have now gone on to have P.A.H, and the hickman line is the only way left to go.

patsyb profile image
4 Replies

Has anyone had this done. I'm really scared

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patsyb
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VanessaJoanne profile image
VanessaJoanne

I have a portacath and I think it's much better than a Hickman line.. Mine is a BardPort.

I use mine for 3 monthly iloprost infusions.

As there is nothing hanging out you can bathe and swim and less infection risk.

VanessaJoanne profile image
VanessaJoanne

I have a portacath and I think it's much better than a Hickman line.. Mine is a BardPort.

I use mine for 3 monthly iloprost infusions.

As there is nothing hanging out you can bathe and swim and less infection risk.

kjane profile image
kjane

I do not have one yet but I am definitely going to go with a Port rather than the Hickman. They are easier to maintain and much less chance of infection. It is definitely a personal choice, but I would ask for all of your options before committing to anything. It feel it is so much easier to have lab draws and IV meds with a Port. My Internal Med MD is not open to placing a Port for me yet but I am fighting for it. I have terrible veins and every time I am admitted to hospital or go to the ER I get stuck 3-4 times to get a good line. Hate it so much and the Port would relieve a lot of pain and frustration for me. Just look at al options so you can make the decision that is good for you. We have to be our own advocates because no one else does. Stay strong and I wish you the best with whatever you decided!! Scleroderma and Raynaud's are just brutal diseases and cause so many other complication. Take care of your self and remember to take time for yourself when you can to relax and reboot. I don't know about you but I get tired very easily these days and even a 10 minute rest helps a lot!

lollipop profile image
lollipop

i had a hickman line and had a terrible time with it , i had an infection in it and ended up in hospital for a week.Never agian would i choose to go through that

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