I have just been diagnosed with Hughes syndrome

[johnlane]

Hi I have just been diagnosed with Hughes syndrome after having been told I have had a silent heart attack that has left we with a clot in one of my heart chambers so I would like some advice on what I can do to live with this condition. I am on Rivaroxban at the moment and am not suffering any side effects

[Manofmendip]

Hello John and welcome to our friendly forum.

Whilst it may not sound good news, it is good that you have been diagnosed, as many people struggle for years to be diagnosed.

Have a look at our charity's website:

hughes-syndrome.org/

There are a lot of useful information on there, including books that you can purchase.

There is a list of APS consultants on the site too, as you should have your APS managed by an experienced consultant:

hughes-syndrome.org/self-he...

May I ask you where you are from, as this will help us and others to help you.

From my point of view I was diagnosed with APS in 2002 and was on Warfarin for 9 years before being moved over to Fragmin injections. I lead a reasonably normal life, working as a building surveyor and enjoying cycling.

Best wishes.

Dave

[tim47]

I too have a thrombus in my heart, mine is termed 'calcified'. I have no idea when it came about, it was found when they discovered that I had a hole in the heart. When I have xrays or echos, if I forget to tell them, the radiologist usually toddles off fairly quickly for advice. I'm told it is about the size of a small fingernail. As far as I am aware there is nothing that can be done about it and, as long as it doesn't move (v unlikely) I'm good.

The good news is that it doesn't seem to make much difference to how I live. I have also had Hughes for over 40 years.

I hope that it makes no difference to your lifestyle.

Regards

Tim