Sticky Blood-Hughes Syndrome Support
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Apixaban and surgery

Apixaban and surgery

A year ago I slipped on wet grass whilst trying to get my daughters dog back into our house! Unfortunately I broke my left humerus, and also managed to relocate my whole shoulder into a bad and very painful position. Eye- watering bad....

I was admitted to hospital, via Emergency. I was prepped for surgery, to relocate my shoulder and pin and plate my arm/ humerus. But only for the operation to be stopped. At the very last minute, literally, off the trolly. WHY? because I had suffered a stroke 6 months earlier due to APS.

THEN due to the humerus break, I suffered a DVT. I was put onto warfarin. But I just couldn’t get anywhere near my target. I was unstable going from 1 to >13 within days,repeating, lots of emergency vit K, and hospital stays.

So to cut it short, and get to the point.

I am now on apixaban. And I find myself in the situation that a year on, I am in terrible pain still with the shoulder and humerus. ( living on morphine)I now have found a surgeon who has the nerves to do the operation to try and do the reconstruction to my shoulder/ arm.

They will stop the apixaban to do the surgery. I am more worried about having no anti coagulation than the surgery.. has anyone else been in a similar situation?

They are not offering any other type of anticoagulant for the surgery, ie injections. Just a sudden stop to “OPPERATE “

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I'm not sure if Apixaban works the same as Rivaroxaban-but I only had to withhold it for 18-24 hours and then restart immediately after. Otherwise they can put you on a heparin infusion to work out the times to start and stop this. I just started back on the meds the day after. BUT.....having said that, I was given half my usual dose and it took me around 3 weeks to get back to 'normal' and without any clotting episodes.

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Talk to your Specialist of APS who is in charge of your anticoagulation before the surgeon will operate. Aware of your stroke etc and APS.

Kerstin

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HI, you need to have a meeting with the consultant/team who are doing the operation, with input from your main Hughes Syndrome/APS specialist with regard to how your anticoagulation is going to be managed before, during and after. MaryF

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Yes, Mary- great Reminder.

Perhaps you can direct Marimoo to the pinned post section here St Thomas Bridging Protocol.

I know StickyBlood Monitor also lent her knowledge of UCLH ‘s link to their bridging protocol also.

However, with APS it is handled different, and your team will need to call a directly.

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Yes a good idea KellyInTexas, thanks for the reminder for my currently foggy brain! healthunlocked.com/hughes-s... mariamoo1 MaryF

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Thank you, but when I read it, it was about warfarin bridge not apixaban? Sorry if I miss read it?

I am actually feeling quite bad at the moment, AND VERY DOWN..

but I do appreciate every thing you all are saying, supportive, and so helpful. But... can I get it through to even one member of the NHS team looking after me? NO , I want to get out of pain, I think even my husband is fed up of me now.

MY SHAMEFULL EMPLOYERS HAVE NOT KEPT MY JOB OPEN. , Because of my stroke, my DVT, and now because of APS being diagnosed, and the complications due too my broken humerus.

I SUFFERED A STROKE IN THE WORKPLACE THEY DID NOT CALL AN AMBULANCE. I was left on my own for 3 hours during and after my stroke. I worked within meters of trained paramedics, first aid qualified staff.

When I was eventually found, at staff change over time, by a college, who phoned our supervisor,and expressed that she thought I had suffered a stroke?

The out come by our/ my supervisor was , I was told to not move work department as planned , for the mainding of my shift, as planned the work rosters, and I had to DRIVE HOME, AFTER A SUSPECTED STROKE and to loose pay.I DID NOT KNOW WHAT WAS HAPPENING TO ME, OR WHAT HAD? IM 48. I just didn’t know what had happened to me.

Even though the outcome was, after scans, treatment, stroke confirmed, APS just about everything. The supervisor, the bosses, managers, all of them all have a job. Not me.. STROKE ACT FAST

Not in this work place. If I was a dog, or deer I would have got help

A stray bird, falcon

A passenger or even lost luggage?

I worked at Norwich airport for 13 years.

No help, no care, no nothing

Not even? How are you.

They have put me through sheer HELL

Why train first aid, why employ paramedics, firefighters?

If you do not respond to your own staffs needs.

Sorry. Had to get it off my chest, let it blow

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Hello mariamoo1 It is ok to have a rant and we understand. You have been through a bad time. Im so sorry you have been treated so badly.

I don't know how long ago it was that this happened but you have a right to do something about the way you have been treated. However with employment law you MUST act fast because to take your employers to a tribunal you need to have acted within 3 months less one day of the incident. If you are still within that time and can face dealing with it all, please consider contacting the union reps at the airport where you worked - if you are not a member of a union they can join you up on the spot. If you don't fancy that then your next port of call would be a solicitor or legal aid company.

Your employer should NOT have treated you like that, or terminated your contract in the way that they have. You need urgent advise.

In the meantime please try and stay calm as it won't help your APS or your recovery from your stroke or the pain in your shoulder.

Deep breath and a big hug from me. x

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Oh and I think the link Mary meant to post was this one, I hope you can find a good Doctor from the list near you:

healthunlocked.com/hughes-s...

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Yes I did mean that one... thanks. MaryF

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I have put the right post there now, sorry about that. Sorry you are having such a tough time. MaryF

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Love to you from Texas. I’m so sorry that happened to you. Where is your family? Where are you from? What is your heritage? Where is your support?

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I understand your dissatisfaction. “Failure to act does not dismiss fault” and in your case it certainly didnt help you. Something is wrong when people put your health second to your job... shameful and down right dangerous. I hope your surgery goes well. Warm hugs, Cindy

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APS is not a barrier to surgery providing both are managed appropriately. First your anticoagulation should be appropriate and stable. Second, the bridging should be coordinated with your APS specialist and surgeon. Don’t be put off by people who clearly don’t understand your condition.

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Many of us on this site, including myself, have had surgery with no clotting or bleeding problems. Again, the key is coordination between the surgeon and the doctor managing your APS.

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I’m in a similar situation myself at the moment. I need a hysterectomy but the Drs told me it was too unsafe due to my APS (In fairness I also had lost too much blood for a safe surgery at the time).

Now, my gynae Drs are liaising with my haematologist and my neurologist to plan the safest surgery for me. It is more risky but it just means extra precautions need to be implemented and doesn’t mean we should live a lifetime of pain and inconvenience due to our APS and anticoagulation.

For me personally they are talking about a heparin drip and admitting me to intensive care so I can be adequately monitored pre and post surgery. I’m on warfarin with a target INR of 4.

Good luck.

Kelly

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Kelly,

I am sure you are in very good hands. Good Luck to you also!

Kerstin

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Thank you x

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Thank you so much for teaching us all along the way, Kelly.

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I'm so sorry for the pain you are experiencing, believe me I understand, as someone who is on morphine daily for pain relief myself.

It's great that you have found a surgeon who is willing to help you and to operate but please ensure you have a bridging plan in place, even if that isn't the normal protocol for Apixaban.

You have APS and will need to be protected from clotting, pre, during and post op.

I had surgery when I was on Apixaban and as is the protocol, I had to stop apixaban a day and a half before my operation. I had been trying to get off Apixaban and back onto warfarin because apixaban did not keep me clot free, probably because I need to have an INR of 4 and above to keep me clot free.

I understand that warfarin doesn't work for you, hence taking Apixaban however I repeat, you must not just stop apixaban dead before your operation, you must have a proper bridging plan in place.

I have always had a bridging plan in place for operations and tests that involve puncture sites while on Warfarin ie, heparin injections or infusion until my INR was low enough to operate and heparin injections post op until my INR was back up to my therapeutic range.

I told my heamatologist and the surgeon, that it was not safe for me to stop my apixaban, without the protection of heparin injections or perfusion.

No one listened to me!

Stopping Apixaban a day and a half before my operation with no bridging in place was a seriously bad idea.

I had multiple episodes of TIAs the night before my operation, with episodes of slurred speech, balance issues, blurred and double vision etc.

My instinct was to not go ahead with the operation but I let the surgeon talk me into it.

The surgeon told me he knew all about my extensive clotting history and promised me that I would be on a heparin infusion throughout the operation and that I could stay on heparin injections until I had seen a Heamatologist to discuss going back onto warfarin.

My sister was with me at the time and witnessed the surgeons promises but foolishly we did not get him to put it in writing.

The heparin injections they gave me post op were stopped after only one day.

I tried explaining to the ward doctor that I my surgeon promised I could stay on heparin injections, until I had seen the Heamatologist to discuss coming off Apixaban and going back onto Warfarin at the higher INR level of 3.5-4.5.

Once again I was ignored and I was allowed no more heparin injections and was put back on Apixaban.

I immediately began having more TIAs, (episodes of partial loss of vision to one eye, zigzag and flashing lights, balance issues causing me to fall, slurred speech etc). I had dvts and svts in my legs which moved and became and PEs (my oxygen saturations were in the 70s%) and as if that wasn't bad enough I then went into a full blown APS flare, with micro clots everywhere in my body and for the next twelve days experienced the most excruciating pain I had ever known! Because of the appalling treatment I received both before and after my operation, it took me six months to recover, when it should only really have taken six weeks!

I am not trying to scare you into not having your operation but I am trying to very strongly advise you to get everything in place and in "writing", before you go ahead.

Make sure your heamatologist implements a safe bridging plan, do not be told that the protocol for Apixaban is to stop it cold turkey a day and a half before the operation.

That protocol is perfectly acceptable if you're taking Apixaban because you have heart valve issues or because you have atrial fibrillation.

You take apixaban because you have APS, which means you have extra sticky blood and can have both venous and arterial clots. You also have a history of multiple strokes and so every precaution to prevent you from having further strokes must be taken, pre op, during the op and post op.

Make certain that your heamatologist has discussed your bridging plan and post op care plan with your surgeon and ask for your post op surgical care plan be put in writing as well.

Make certain that you have your bridging plan for pre, during and post op and your post op surgical care plan in place and "in writing" well ahead of your operation. Make multiple copies of both the bridgeing plan and post op surgical care plan and if possible laminate them (there is then less chance of them being lost or damaged once put into your medical notes).

I'm assuming with your APS and need for bridging plan, that you will be admitted to a ward the day before your operation?

If so ask the ward matron if they have been given a copy of your bridging plan and post op care plan. If not give them a copy and insist that it is put into your ward notes and that all the ward nurses and doctors are made aware of it.

This may sound drastic but trust me it's not. Surgical wards are not used to dealing with patients with rare conditions like APS and you will find that most of the nurses and doctors haven't even heard of it. Please don't allow your pre, during and post op care to be under the care of doctors, surgeons and nurses who don't understand APS and therefore don't understand your needs.

Hope this helps, I know I wish someone had given me this advice before I went ahead with my operation last year! 😱

Best of luck, Claire 😀

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Hi Claire,

I am so impressed by you telling us this! I want to thank you for taking the time to write this down and for the very good advices for us when we must go through an operation with this rare illness that so very few surgeons and nurses understand.

Kerstin

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I'm afraid I can't take the credit for this advice Kerstin.

It was actually my SeAp advocate, who is helping me thru the complaint process, following the appalling treatment I received before and after my operation last year.

She who told me to have everything in writing and also to laminate it because its harder to lose or get damaged.

My advocate also suggested doing a bullet point record of my medical history and to also include information about what treatment and support I will need on the ward both pre and post operation, this should be laminated too and put into the ward notes.

My Ehlers Danlos Syndrome Rheumatologist also wrote a letter for me, explaining the difficulties I will experience, ie pain, possible injury and physical stress on my body following an operation.

He also explained that the act of simply leaving my home and being away from the my natural environment, without the help of my carers, my many mobility aids etc, would have a major impact on me physically, on top of the physical strain of having an operation as well.

I have made multiple copies of my Rheumatologists letter and will make sure I give a copy of this to the surgeon and ward staff as well, if I ever need another operation.

My advocate has helped many patients with their complaint processes and often they are patients with very complex health issues, hence them receiving poor treatment during their hospital admissions because the doctors and nurses treating them, had no understanding of their patients complex medical conditions, or of their patients needs pre and post operation.

Claire 😁

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Thank you so much for taking the time to read my post, understand my concerns and then to reply to me. Your reply alone must have taken so much of your time to write, and must have brought back so many upsetting memories, and I do hope they are just memories, well in fact we should say nightmares. you went through an absolutely terrible experience, one that rings true to a lot of us. All the surgeon has said, is that he has got the all clear from the hematologists to go ahead, and that I will just stop apixaban.

When I was on warfarin my INR range was 3.5 - 4.5. But too be honest, the higher it was the better I felt, the better I was living.

On apixaban I just feel wiped out, exhausted. But no bad major bleeds or complications so far, but I’ve only been taking it for just about 6 months. I’m finding difficulties with my eyes, but that may be because of the combination of meds they have me on here in the UK. Are you in the Uk? Also, could I please use your original reply in some way, so I could too, use it to print off, and maybe show my surgeon, hematologists, and ESPECIALLY the ward doctors and ward staff. Once you get on a ward, forget it.... They take all your painkillers, meds. And they just don’t give them you when you actually need them, they mess up months of how your have got your own body to work with the medications.

Even the nurses here in the UK, at my local GP surgery, the clinics and wards at the hospital. Do not, or have ever heard of APS. Even some of the hospital doctors. I have spent a lot of money, buying books for all of them. But alas they look at me crazy.

mariamoo@yahoo.com

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Your so welcome, I just couldn't bare to think of you going thru anything like my horrific experience.

I'm in the uk and my operation was at St Thomas Hospital. I live near Sevenoaks in Kent.

Re your medications while an in patient. Would it be possible for your GP to write a letter, explaining that you have to take your medications at a certain time each day, particularly your pain medications.

My rheumatologist also said in his letter, that I have to have my pain medications at the same time I take them when I'm at home, otherwise I will end up with an acute flare up.

Also, if you've been taking morphine for pain for quite a while now, you will have built up a tolerance to it.

It is vital that the anesthetist is aware of your pain levels and that you already take morphine for your daily pain relief. You may well need a higher dose of pain relief, coming out of the operation as the anesthetic wears off. The anesthetist did that for me as I came out of the anesthetic, it was one of the few things that went right!!

Likewise, the nurses and doctors on the ward need to understand that because you are prescribed morphine for your pain by your GP, you will have built up a tolerance to it and therefore will require higher doses of morphine than is normal for your post operative pain relief.

Apixaban only has an equivalent INR of 2-2.5, which is too low if you needed an INR of 3.5-4.5 when on Warfarin. Apixaban still has its place for those who can't tolerate warfarin but not on its own, I personally think that if you needed a high INR on Warfarin, then you should have an anti platelet med as well. Do you take an anti platelet or other anticoagulant meds as well as Apixaban?

Personally apixaban did not work for me, I was clotting on it constantly, I was having TIAs, blurred vision, migraines, acute abdominal and kidney pain, leg pain and swelling, brain fog, couldn't find my words etc etc, you name it I had it. Now that I'm on Warfarin again, when my INR is above 4, I have hardly any APS symptoms and I'm pretty furious that I was left suffering for a further six months post op, before I was able to get off Apixaban and back on warfarin.

You're very welcome to use my suggestions above but if you can get your heamatologist to realise you need a bridging plan and to put it in writing, that would have far more influence. Or perhaps your GP could write something?

Before you go ahead and sign any operation consent forms, tell the surgeon and heamatologist that you want it put in writing that you have APS. You also want it in writing that they, as your surgeon and heamatologist, are fully aware that with APS you are a very high clot risk and that as such, they have both taken every precaution, bridging plan wise, to protect you from clotting before, during and after your operation.

You can bet your boots they will sit up and take action to protect you, if they have to sign something acknowledging that you have APS and that you are a very high clot risk.

Where abouts are you in the UK? Perhaps I can put you in touch with my advocate?

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How very helpful and timely- for Maria and Kelly 🇬🇧

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