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Hughes Syndrome APS Forum

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Hi I'm budleigh

Budleigh profile image
15 Replies

I just posted but it was under me then I said from budleigh I look forward to chatting to you all soon

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Budleigh profile image
Budleigh
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15 Replies
Manofmendip profile image
Manofmendip

Hi. I agree with my colleague's question to you, please confirm that you have APS/Hughes Syndrome.

Budleigh profile image
Budleigh in reply to Manofmendip

Yea I have aps and I was wondering if anyone else has had their IVC filter removed

Budleigh profile image
Budleigh

Yes I do have aps

Lure2 profile image
Lure2

Tell us your story shortly, otherwise it is not possible to know what sort of help you need . Do you have symptoms or antibodies or both? Where do you live and do you have an APS-Specialist?

What is wrong?

Best wishes from Kerstin in Stockholm

Budleigh profile image
Budleigh in reply to Lure2

Yes I have aps ..DVR in both of my legs and 3x pe on both of my lungs ... I was wondering if anyone else have had their IVC filter removed as my one is badly blocked

Budleigh profile image
Budleigh in reply to Budleigh

I live in London England

Ozchick profile image
Ozchick in reply to Budleigh

Was the IVC filter put in due to PE's? They are very fine little things and once deployed can't be unblocked only removed. If you are properly anticoagulated and have no other cardiac problems check with your specialist whether you actually need another one. Of course, if you have fibrosis in your lungs, filters can help by not clagging the lung function further.

Love you attire BTW! I think there must be a manufacturer out there who only makes this fabric in this print for hospital gowns.

Budleigh profile image
Budleigh

Yes I do have aps and I was wondering if anyone else has had their IVC filter removed.

suefessey profile image
suefessey

Hi Budleigh,can't your filter be unblocked.x

Budleigh profile image
Budleigh in reply to suefessey

Hi SueFessy no it can't be unblocked. I was one of the first people to have one fitted under research for them . I am worried about the damage it is doing to my body as I seem to be in and out of hospital none stop ..

suefessey profile image
suefessey in reply to Budleigh

When was it fitted?

Budleigh profile image
Budleigh in reply to suefessey

In 2010 and I am still getting pe,s on both of my lungs ...I watched I removal of one on YouTube put I can't find any ones which are badly blocked ...

Lure2 profile image
Lure2

Hi again,

As APsnotFab says it is exstremely important to have a Specialist of this illness. Two things are important. 1) a diagnose 2) a Specialist who can give you the right treeatment.

It sounds good that you live in England and not in a far away country where there are very few Doctors who understand what APS is and how it should be treated. Hope you are today properly anticoagulated.

Kerstin in Stockholm

Budleigh profile image
Budleigh in reply to Lure2

Thank you for your help

Wittycjt profile image
Wittycjt

You may find information on this at medscape.com type it in the search area then hit "enter" . Good luck let us know what you find.

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