To Bridge or Not to Bridge? - Hughes Syndrome A...

Hughes Syndrome APS Forum

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To Bridge or Not to Bridge?

Tiggercat profile image
6 Replies

I am about to shut the door now the horse has bolted but I am wondering if someone out there can help me find a firm answer.

My husband was diagnoised with APS after suffering a DVT 3 years ago. We were lucky to have a very switched on Senior Medical Specialist who thought there was no reason for him to get a DVT when he was fit and healthy so checked for APS.

When he got the results of the tests back 6 months later (they had to wait 6 months to stop his warfarin before they could do a second test, he said that his levels were so high that there was no doubt at all and he needed lifelong warfarin to prevent any other problems.

He has kept in good health since.

Last year he had to have surgery and so they stopped his warfarin 5 days out, and left him until the day before surgery, then admitted him to hospital to administer a Hepron infusion to prepare for the surgery.

At some point between his warfarin being stopped and being released from Hospital post surgery something happened. He lost his Adrenal Glands and now has Addison's.

My question is (and I have one) does anyone have anywhere I can go to get definite authoritative information on what forms a High Risk and therefore making Bridging with LWMH (clexane) vital. He didn't have his INR monitored and wasn't given LWMH during the 5 days prior to surgery so they have no idea what his body was doing. They appear to have looked at his DVT, thought "oh, 3 years ago, low risk" and didn't look at his diagnosis blood work, or the fact he was being operated on for active cancer.

Just an aside - they won't do ANYTHING to him now without transitioning him and because of the Addison's he is not allowed to wait in A&E if he turns up, which is good.

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6 Replies
Manofmendip profile image
Manofmendip

Hello Tiggercat

Well, whenever I have had surgery I always started injectinig 15,000IU of Fragmin at the same time as stopping my Warfarin (7 days before surgery) and then continued the Fragmin until my INR was above 3.3, then I reduced the Fragmiin dose to 5,000IU until my INR was back at 4.0 (my target).

After heart surgery I was testing my own INR and I had no idea that my tests would be inaccurate for 3 months post op, so I stopped the Fragmin way too soon and had a TIA.

I hope this helps.

Who told your husband not to bridge with LMWH when off Warfarin? I went to see one of Prof Hughes team to get their advice before I prepared for my surgery.

Best wishes.

Dave

Tiggercat profile image
Tiggercat

Thanks for your reply Manofmendip.

He wasn't "seen" by anyone and not advised NOT to take it, just not advised TO inject, I believe it was the Hematologist that decided the course of action to be taken. I was asked 2 weeks post surgery (when he was in CCU in full Addison's Crisis) when and where he was diagnosed with APS which told us they had not bothered looking at his records, and probably didn't know anything about APS.

He wasn't seen by a Rhumatologist until after the Hematologist went to check the records, and never came back.

It was then that they thought he might have been in Catastrophic APS (thanks to a junior Dr looking up the symptoms on the internet). It turns out several of the treatments for CAPS also help Addison's Crisis and so once they stabilised him, they checked his adrenal glands and found they had been destroyed "at some point" prior to admission.

Given his symptoms in the 2 weeks post surgery (from the minute he left hospital) I figure the glands possibly got destroyed when they put him on Hepron after 5 days without Warfarin.

Looking back (because hindsight is 20/20) he showed signs of fine vain bleeding when in hopsital but only in the finger tips and toes and we didn't know then, what it was.

Tiggercat profile image
Tiggercat

Thanks. It's close to what I am looking for.

They are dealing with Chest surgery and not abdominal surgery, so was hoping to find something on Abdominal Surgery that can be cited in a complaint.

Zezes-nan profile image
Zezes-nan

I hope you manage to find out if your husband should be 'bridging' or not . I find it very confusing I saw my haemotologist at the end of the last year and asked him what the procedure was prior to dental extractions he gave me a very confusing leaflet and said there was a possibilty that I would need to bridge. So I went and asked my GP she said to ask the dental department once I had my referral so I took the form showed it to them and their comment was "its not major surgery we need you to have your inr tested either the same day or the day before" so you know how much warfarin to take. Off to see my Go next week so will read the links before and hopefully get a proper answer.

GinaD profile image
GinaD

Oh me. Oh my. Literally oh me oh my. My best wishes for you two as you adjust to this newer reality. But selfishly read all this with my first thought being, ". But I'm allergic to both heparin and lovanox! There is no bridging for me! Which is why I will entertain surgery only in a life or death situation."

Good luck!

Tiggercat profile image
Tiggercat in reply to GinaD

Well surgery for my husband is also not only if it is life saving. Alas, it was to remove Cancer so it was a toss of the coin, risk death having surgery, certain death if he didn't.

Neither option good, but ending up with Addison's was not even on the radar.

Even putting him on Asprin for a few days might have saved some problems.

As for dental work. Our Dentist has said that anything more than a filling, and he is not going to treat him, he has to go to a Dental Surgeon instead. And that will cost a whole heap more money.

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