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SVC Obstruction due to clot in port-a-cath

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Hi, has anyone had SVC Obstruction due to a clot in their port-a-cath. I have had several ports in the past which all had to be removed due to being infected. My most recent port lasted 18 months but then clotted, hence sending a clot to my heart valve obstructing it. My port was removed and then i had to have 2 stents inserted into my heart valve. I am now on Warfarin for life. Has anyone experienced this before with a port? If so, what further IV access can i have? Doctors not keen on anything due to the life threatening situation i found myself in.

I am a severe/brittle asthmatic and need IV access for IV aminophyline at least once a month along with other treatment.

Can anyone help or have any suggestions?

Wheezylou xxx

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I don't have any advice re: the access issue as that's not really my area. The SVC obstruction must have been very scary for you. Hope you are recovering OK now. I think there are a couple of members around who may be able to help you re: access.

Hello,

Sorry to hear about your difficulties. I don't have any experience with this myself, but there was somebody who used to post on here who ended up having an arteriovenous fistula created to create venous access. I think this is commonly done for dialysis patients, and this website seems to explain more: kidney.niddk.nih.gov/kudise...

Hope that helps and that they find a solution for you soon.

xx

Many thanks. Yea, it was really scary. My face and neck swelled up, i even have a photo on my mobile phone. It was really bad cus the heart could not pump the blood around my body so my face and neck really swelled. Anyway i got through it as i do everything else and i have 2 stents (shunts) supporting my heart valve and am on Warfarin for life. Never mind, could have been worse.

I have just signed up to asthma uk so am new to this site. Thanks for replying. Take care.

Weezylou xxxx

I can only imagine how scary it must have been - I've had a couple of patients devlop it, one slowly and the other acutely. It was scary enough for me as a doctor with the acute case! So it must have been terrifying ""on the other side of the fence"" as it were.

Glad to hear you are recupertating. And welcome to the boards!

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KateMoss

Hello Wheezylou and welcome to AUK message boards!

I am brittle too but haven't had the need for portacaths or hickman lines. Hope you have recovered - sounded nasty!

I do however use s/c infusion of Ventolin (most people though use Bricanyl) - has this been tried or suggested as a method of controling the dips? Just a thought.

I have friends who have had portacaths - the longest lasting one being 18 months - they usually were hoiked out after infections set in etc.

The Fisstula as sugested by Carrie may be a route - I can't think of anything else venous access wise apart from something called a permacath, similar to a portacath - there are a few varieties of indwelling ports around - a lot of CF pats have ports fitted.

I have naff veins but after a bit of swearing (on both parts LOL!) someone gets a venflon in me! My consultant has joked about teaching me to pop my own venflons in but I think I would need a self sealing canula otherwise there would be blood everywhere!

Take care

Kate

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