Sticky Blood-Hughes Syndrome Support

Bridging with Cessation of Warfarin

2010 - Derek suffered a DVT.

2011 - after a year on warfarin, he was diagnosed with APS.

2012 - Feb - he suspected of having Prostate Cancer.

2012 - May - Cessation of Warfarin for 5 days for Prostate Biopsy. Followed by Sepsis.

2012 - Sept - Cessation of Warfarin for 5 days for Prostate Surgery.

2012 - Oct - Admission to CCU with Catastrophic Antiphosphilipid.

2014 - Oct - Admission by Hospital that they failed in Derek's care by not notifying him that he required BRIDGING with Cessation of Warfarin. They did this TWICE.

They wrote a pescription, but didn't tell him about it.

If you are having surgery, are notified to stop Warfarin. Please, make sure you have BRIDGING with LWMH.

Don't wait for the medical profession to offer it. TELL THEM TO GIVE IT.

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Good advice Tiggercat

Also make sure that you keep the LMWH bridging going until your INR is well back in target range.

Dave

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I am sorry to hear this story, being in close contact with your hematologist before any surgery/operation/procedure is very important.

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The trick for us thomas_tz was that after Derek was diagnosed, he was sent back to his GP to have his INR monitored, and that was it. No followup appointments, no education, no hematologist or rhumatologist. Just the GP.

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It is not much different for myself, I only see a phlebotomist once a few weeks for the blood test. But it is part of a hematology clinic, and I can request to see a nurse if I have anything to discuss.

I am sorry again for all your trouble and the terrible outcome.

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For those in UK, tell your people that St Thomas' have a protocol for bridging and that they should get hold of it. Make and keep a couple of copies for yourself, hospitals have a habit of losing the ones they may be given.

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How is Derek doing today? Has he got an APS-doctor?

The "Catastrophic Antiphospholipid Syndrome" is very rare and serious and I hope the doctors took their responsibility afterwards.

Best wishes to you and to Derek!

Kerstin

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Lure, yes he does. but more importantly, we now research EVERYTHING. Our Dr admitted we probably know more than they will ever know about the day to day of living with the conditions he has been left with. His Rhuemy is also his Internal Medicine Dr so we are covered pretty well now.

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Tiggercat - I know you have been fighting for Derek's case for all these years and Im so glad that the Hospital have finally admitted their mistake. This can never undo what has happened to him but I hope it gives you some satisfaction and they are prepared to compensate in some way.

Well done for your tenacity to keep fighting and caring so much, your love for him shines through! x

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Thanks APsnotFab

There is very little compensation (silly system where you can't sue in NZ) but we have now had the incident reported publicly as a Medical MIstake. The report becomes public today, and this means that all other hospitals see the report and hopefully learn from their mistake.

They rate these Hospital Events based on the NZ National Severity Assessment Code (SAC). SAC1 signifies the most serious events through to SAC4 for least serious.

Derek's Rating is SAC1. In the last 3 years all SAC1's have resulted in Death. He may be the only SAC1 that has survived to talk about it.

It is a great victory to have it made public via the health system.

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This is the brief report in the papers about Derek's CAPS. It doesn't mention the medical condition unfortunately, but shows what can go wrong without briding.

stuff.co.nz/dominion-post/1...

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