Hughes syndrome and congenital hole in heart

Hi I'm new to this site , 65 recently retired. 7 years ago I was told I had sticky blood which meant nothing to me and as the consultant didn't seem bothered I forgot about it. Then 4 years ago I had a blood clot in my brain and told it was Hughes Syndrome and placed on warfarin for life. Fortunately I have been pretty good with a stable INR until recently. I have a congenital hole in the heart which I am now told needs to be closed. Has anybody undergone heart surgery like this with APS. I am very concerned and as I am also a full time career for my husband don't know who to turn to for advice.

Theresa

12 Replies

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  • Hello and welcome.

    Yes, I had a triple coronary by-pass with APS.

    What needs to happen when surgery is required is for the patient to bridge by switching from Warfarin to Fragmin (Low Molecular Weight Heparin) injections for a week before surgery and then restart Warfarin after surgery but keep the Fragmin shots concurrent with the Warfarin until you are back in your target INR range.

    Fragmin works on a different part of the clotting cascade to Warfarin and doesn't affect INR. So, a week after starting Fragmin and stopping Warfarin, your INR should be around 1.00 but you will be protected by the Fragmin.

    Where are you from & who is managing your APS?

    Best wishes.

    Dave

  • Thank you for the reassurance. I think it was the shock of finding out I needed the operation when I had no signs or symptoms apart from a heart murmur. I live in the East Riding and my day to day management is with my local doctor. I don't see anyone else.

    Theresa

  • Dave has given you clear advice which I agree with, I hope it goes well for you. MaryF

  • Thank you

  • There is a good APS consultant at Castle Hill hospital if that's near to you and they would look after you well there.It's where they refer you too thou thats out of yoir control but am sure it will be where the best expertise is

  • Hi I have found out about Dr Allsup at Castle Hill and that is also where my cardiologist is based so I am beginning to feel that things are becoming clearer and less scary. Thank you for your reply.

  • You should really have a consultant who understands APS to manage your condition.

    Dave

  • I am going to see my doctor this week and discuss this with him. Everything seems to be happening so fast and yet nothing seems to progress.

    Theresa

  • I know how you feel about progress as I've been in hospital 26 days and things move so slow I could scream

  • Hope things are beginning to move for you. I know what it's like sitting there and wondering what will be next. They are obviously being very thorough and that can only be a good thing!

  • As Dave is saying: Exstremely important to have an APS-Specialist.

    Best wishes from Kerstin in Stockholm

  • Hi Everyone

    Thanks for all your support. Went to my doctor this morning blubbed all over him. Poor man. But he was very supportive and he is going to refer me to an APS specialist and find out about the heart operation for me. I go back to see him in a week. Good news my blood pressure is back to normal and my INR is coming back into range.

    Thanks again T

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