APS and the management of anticoagulation during surgery.

[jagessar]

Having caused a stroke twelve years ago my APS was diagnosed.Subsequently I have suffered from fibroids and gallstones which along with the warfarin, have been manageable.At the age of 67 I had assumed that the fibroids had shrunk but investigations have shown not only the fibroids but a thickened uterine wall plus a polyp.I am booked in for a minor op to remove the polyp but if the results from a recent endometrial biopsy, indicate cancer,I will need an Hysterectomy.Over the last twelve years I have not come across a doctor who has displayed any understanding of my illness. My concerns regarding the safe management of anticoagulation are met with an attitude of 'It will be fine' which gives me very little faith in the outcome! Up to now I have managed to avoid surgery for my other problems for this reason.The urgency of the surgery I now need gives me little choice and I would be very grateful for any advice on how to deal with this situation.I do intend to contact my APS Consultant but but wonder if there is more that I can do.Thank you

[Manofmendip]

Hello and welcome.

When i had heart surgery I transferred from Warfarin to Frgamin injections for the week before and then started Warfarin again, after surgery, and kept taking the Fragmin shots until my INR was back in range. I hope this helps you.

Dave

[jagessar in reply to Manofmendip]

Thank you Dave.

[MaryF Administrator]

HI there, welcome, you have landed in the right place, can you let us know where you are located as we can help you more effectively, once we have a rough location. MaryF

[jagessar in reply to MaryF]

Hi, I now live in Sevenoaks,Kent but I am under the care of the UCH Haematology team for my APS.I have recently been considered as high risk for uterine cancer and still await biopsy results.The 'fast track' in my local hospital group has been excellent but I now find myself booked for a precautionary polyp removal which is a minor op but when I was told' we will stop your warfarin',without mentioning a bridging plan,I became alarmed.If my biopsy results come back positive this week,I assume that an Hysterectomy will then be necessary.Either scenario,I have no desire to have any surgery without the support of a APS specialist team.Ideally I would prefer to have all my care at UCH or any other hospital which is used to dealing with APS patients during surgery. I would appreciate your advice.

[jagessar]

Hi Dobiedogz,thank you for your reply which is very helpful.I wonder if there is a link between fibroids and APS? My fibroids and APS were simultaneously discovered when I had a stroke twelve years ago.Every month I suffered a haemorrhage for a couple of days and at the same time small emboli were accumulating in my lungs.The resulting breathlessness was undiagnosed until a major event occurred! I was told that the fibroids would shrink with the menopause but ten years post menopause they are still there along with a polyp and hyperplasia.I don't wish to risk any surgery as a precautionary measure! I hope that you made a good recovery from your last stroke?

[jagessar]

Thank you APsnotfab. I am working on the relevant communications at the moment but lost faith when I was met with a blank response from the gynaecology oncology department when I mentioned the need for 'bridging' during surgery. The problem seems to me to be that if your symptoms tick the boxes for cancer other medical problems are treated with disregard,especially a condition which is not very well known! I must point out that I have not been diagnosed with cancer and I am weighing up the greater risks! Take care

[Holley]

To reiterate what others have said, I go off warfarin 5 days prior to a procedure (whether minimal surgery or more intensive) and bridge with Lovenox injections. All anticoagulation is held the night before. I restart with both the warfarin and the Lovenox injections the night the procedure was done. I get tested frequently until my INR is back in the therapeutic range. Definitely use your power as the patient and advocate/request communication between you and your teams. That said, I did have a complication after a kidney biopsy. The procedure was done at a medical facility that didn't have an existing relationship with me. My hematologist from the hospital I usually go to was unable to manage my blood issues during the procedure. I was insistent that I see the hematologist on staff. In hindsight I would have pushed to see the attending physician. I saw a teaching fellow. I wasn't monitored closely enough. We are very in tune with our bodies. I trusted myself when things didn't feel right and went back to the hospital. In the emergency room, the doc didn't seem very knowledgable about APS and sent me home. I got worse and went right back. Be persistent. As a result, I've decided to have all procedures done at the hospital where my hematologist (he's my APS guy) is located.

[Dot69]

I had a hysterectomy 25years ago due to fibroids having a stroke in July 2015 then diagnosed with APS + medical issues over the years I'm nearly sure if APS had been picked up all those years ago my stroke wouldn't have come about.

[CheddarAddict]

Hiya. Been there recently and I made a point of making the urology docs aware I had a clotting disorder and thst I would need bridging on and off warfarin for the op and that they should talk to my APS docs at St Thomas's. Similarly with the oncologist after as there were potential issues with chemo and clotting. They all talked and as per fairly standard procedure I was put on tinzaparin for week before opening me up and had nothing the day of options restarting next day. Continued with injections until chemo had finished and started feeling towards normal.

If they are aware they can deal with and manage it. Tbh I sort of feared my blood messing about more than the cancer throughout but all was kept a close eye on

Hope everything goes well x

[jagessar in reply to CheddarAddict]

I understand your greater fears for your blood management,Cheddaraddict. I suppose it is the constant battle for APS to be recognised which does not inspire confidence. Cancer is obviously high profile.I find myself being fast tracked because my symptoms ticked a few boxes for cancer and in the opposite situation regarding the responsibility for the safe management of my INR during surgery.It is being passed from one specialist to the other, through me! It is now my responsibility to ensure that my GP co-ordinates communications between all concerned and that I have a bridging plan in place ASAP.I am grateful that I feel well enough to organise my own care and also have family willing to support me but I would have great concern for someone more unwell and alone who were put into this position.I appreciate that I must persevere but admit that this added stress is making me feel more ill than the original problem! I do not understand what is so hard for the Gynaecologist to contact my Haematologist, and then advise me on agreed bridging plan.Sending me home after assessment,saying stop your Warfarin five days prior to your op and get your GP to sort out your special requirements, is unacceptable!

[Wittycjt in reply to jagessar]

This sounds appropriate to me

[Hidden]

I just want to reiterate Holley's reiteration....bridge but do NOT trust that it will "go as planned"....you MUST be INR monitored in excess of recommended practice patterns as you bridge BOTH down in warfarin pre procedure and up in warfarin post procedure.....insist...not sure what the UK protocols are for INR monitoring during bridging but I had the "power" of consultations/opinions/statistical data in aggregate of 7 hematologists in the #1 US hospital in developing protocols and it still resulted in a TIA on day of routine colonoscopy...MUCH of the data for bridging protocols w/LMWH has been compiled from discontinuation of warfarin among patients who have had MI's or other cardiovasular disease risk requiring anticoagulation and NOT APS....the protocols for bridging used for you MUST be from data sets specifically for APS.....the 5 day d/c bridge with Lovenox is the "standard" protocol BUT the dose of Lovenox may need to be adjusted during the 5 day bridge to prevent you from being hyercoabguable for too many days pre procedure....this requires at least daily INR monitoring...and if dropping too quickly even twice daily or hourly.....you MUST push the limit of your own safety because "standard protocol" doesn't always turn out well

[msins in reply to Hidden]

So true. We understand out condition better than most doctors unless they specialize in our disorder

[jagessar]

rhmmsg and Holley, a very good point.It has become such a battle to get a bridging plan, when I finally have one it will be crucial to have it monitored adequately!

[msins]

You absolutely need a bridging plan and get it in writing to give to your surgeon. I had a heart valve replacement and 5 days went off surgery and was given lovenox shots. The day before surgery I was admitted to the hospital and hooked up to to a heparin drip. I was taken off that 6 hours prior to surgery. Then After back on heparin After release from hospital back on lovenox shots and then my Coumadin. My hematologist said I would need to do the same bridging if I needed a biopsy. Hope this helps you. Good luck.