Gallbladder removal and APS I am in t... - Hughes Syndrome A...

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Gallbladder removal and APS I am in this situation

DianaWM profile image
20 Replies

I have been told for 31 years I’m too high risk for any surgery and I need quite a few

Now I’ve had many flares with my gallbladder and am currently in hospital as it’s now infected

I’ve been told if it isn’t removed it will keep recurring

have any of you had your gallbladder removed and how did you get on - I know we are all different and I will get on with it differently to some others but I would like to hear from others who have had their gallbladder out

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DianaWM profile image
DianaWM
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20 Replies
HollyHeski profile image
HollyHeskiAdministrator

Hi welcome, I see you have just joined. Do you have Hughes/APS? Is this why you have been told you are high risk for surgery?No surgeon likes to work with APS patients as we are high risk of clotting aswell as high risk of bleeding if on anticoagerants or anti platelets.

I have had quite a few surgeries, a few before diagnoses, one leading to further clots. I am triple positive.

My gall bladder removal was after diagnoses, had so many issues but it took 2 years before they finally excepted it needed to be removed. Once the procedure was planned, my haematologist and surgeon devised a bridging plan, as I am on anticoagerant and two antiplatlets for my APS.

The surgery was a breeze, successfully done by keyhole surgery, went to plan and I've never looked back.

You need the confidence to go ahead and only your surgery team and APS specialist can give you this.

Hope you feel better soon

DianaWM profile image
DianaWM in reply to HollyHeski

Thanks so much for your reply I have APS yes and been told for 31 years I can’t have surgery as I’ve not only got APS there are other issues too

I’ve got a history of bleeding after tooth extraction (although I never used to)

I also lost 4-1/2 pints blood after bowel polyp removal so it’s a cornern

I am not on antiplatlets now since my hemotologist (an APS specialist) took me off as the risk outweighed the benefit

So I’m on warfarin only - I’ve done many bridging procedures it’s just emotionally a big thing for me

HollyHeski profile image
HollyHeskiAdministrator in reply to DianaWM

Totally understand, when you've been through traumas it's really hard to trust again.Please talk everything through with your heamatologist and surgery team, they need to know your concerns and have a plan ready in case you bleed.

DianaWM profile image
DianaWM in reply to HollyHeski

will do thanks so much again and I’m so happy you’ve had a few surgeries and you’re ok

Bloodredroses profile image
Bloodredroses in reply to DianaWM

bad luck poor you . How long before tooth extraction and polyp removal did you stop blood thinners ? I was told 5 days . I cut myself minor cut accidentally during that, after 5 days , bled like a fountain , finger . My Heamo said not the Rivaroxaban , drugs used during surgery , ? I dunno,

Tofino5 profile image
Tofino5

I suffered with a bad gall bladder for years, and it was removed by emergency surgery, all shortly before my APS diagnosis. I’m triple positive and felt very lucky that it all went well. Having a poorly functioning gall bladder can be so debilitating, even when you can plan for it, it’s a big decision. Like HollyHeski says, your team is the most important part here. All the best to you, let us know how it goes.

DianaWM profile image
DianaWM in reply to Tofino5

Thanks very much I’m so glad yours went well that is wonderful- I’ve had too many bad bleeds in the past after small procedures so it makes it more of a worry but I will trust the team thankfully I have a great hemotolgoist who understands APS

Bloodredroses profile image
Bloodredroses in reply to DianaWM

you are so lucky, I do too .( but we all have different surprising reactions to APS. ) So many people have such difficulty at getting diagnosed . Professor Hughes ( Hughes Syndrome yes. At a talk I attended of his, said as much . A lot of G P . S have no idea , my G P ( ladies ) have been great , admit as such and go with my intuition on symptoms . Prescribe . It works .

KellyInTexas profile image
KellyInTexasAdministrator

I had mine out ( no stones/ ejection fraction all but naught) , but was pre warfarin.

The key is to have a surgeon who is guided by your hematologist re: anticoagulant/ bridging surgical protocol.

Best wishes for improved health!

DianaWM profile image
DianaWM in reply to KellyInTexas

thanks very much

MaryF profile image
MaryFAdministrator

Hi, not had this, however I do know that gallbladder issues are connected with Thyroid problems and unfortunately thyroid testing in the UK is pretty bad, they only do one test! To find out my problems, I had to do my own private tests, so it may well be worth exploring that after the operation. ncbi.nlm.nih.gov/pmc/articl... MaryF

DianaWM profile image
DianaWM in reply to MaryF

hi Mary my thyroid is fine it’s just been checked but thanks so very much for the tip most appreciated

I know they don’t do all the different tests as standard here in the UK do they x

CeceliaRood profile image
CeceliaRood

I had my gallbladder removed this year and did fine. I was told by my rheumatologist that blood clots that wondered into my gallbladder calcified and that is why I I had stones, very common in APS patients, best to get it removed to avoid problem.

DianaWM profile image
DianaWM in reply to CeceliaRood

I had a serious infection an it’s amazing I survived and it didn’t burst or go gangrene

Problem is I’m also a HUGE surgery risk

Bloodredroses profile image
Bloodredroses in reply to CeceliaRood

Gall bladder surgery is fairly seamless these days . Lithotripsy ( sound waves . ) break it up, but need a week and supervision to see it drains ( like sand) completely .

Bloodredroses profile image
Bloodredroses

100 % you will feel much better after removing. Any recurring infectious body , even a tooth, drags one’s immunity down . Just eat well . Rest well recover .

suwinter profile image
suwinter

hi, I had my gall bladder removed as a complication of Pancreatitis. My warfarin was stopped the night before the op and I switched to heparin for 7 days after. I didn’t have any complications.

I had keyhole surgery, I didn’t have stones apparently, just a load of “sludge” (the surgeons words).

I was in hospital for longer than normal due to them worrying about my warfarin controlled INR, other than that, all went well.

Hope yours does too.

DianaWM profile image
DianaWM in reply to suwinter

thanks so much I am very worried as I’ve had minor things with no anesthetic and bled badly one life threatening so it’s made me more nervous; even off warfarin I’ve had issues so I will have to see what surgeon says

I’ve just been in hospital for 2 weeks with a very serious infection in gallbladder it was very serious so its a case of not good keeping it and due to my history risky removing it

I’m waiting for surgeon to ring me

suwinter profile image
suwinter in reply to DianaWM

Hope it all works out for you x

DianaWM profile image
DianaWM

Thank you me too I’m so glad it did for you xxx

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