Urgent help needed

[Lind8]

I am currently in hospital. I have had severe APS for many years & manage on high dose warfarin. I have colon cancer & need surgery. They took me off warfarin & put me on foundaparinyx 7.5 mg daily with the intention of stopping all blood thinners 2 days before surgery & day of surgery . I was on foudaparinix for just two days due my surgury 2 days later & had a heart attack ( clot through heart).. I've been in hospital for 2 weeks . I am due to see surgeon again in the morning. They want to start process again I'm terrified. Had stroke years ago when put on heparin. Has anyone else had major surgery & how was it dealt with in terms of anticoagulation? Thank you for any ideas ?

[KellyInTexas Administrator]

oh Linda- so sorry!

I too, did terribly on fondaparinux when switched. ( within 8 hours I had terrible symptoms, so my hematologist said to start bringing with enoxaparin and transition back to warfarin.

I’ve not had surgery, but many here have. Enoxaparin should do the trick.

Your hematologist should know that there is a special protocol for APS patients. The surgeon would liaise with the APS specialist hematologist.

The very best of luck to you.

[Lind8 in reply to KellyInTexas]

Thank you do much Kelly. My hematologist left after covid so been left with a hematologist nurse & a locum hematologist both in different hospital. So no one who really knows anything about me. The only good thing so far is the heart attack left no lasting damage. No one knows me anymore. I keep tryimg to explained how servre my APS is. Feels like I'm back at the beginning of my diagnoses again 35 years later fighting to get them to listen.

[Lind8 in reply to KellyInTexas]

Just looked up enoxaparin, I am allergic to heparin, get massive hives & also have platlet problem. So not sure i would tolerate it. Having platlet transfusion 2 hours before surgery so that would sort that out bleeding part. But will ask them.

[MaryF Administrator in reply to KellyInTexas]

Great that you have been there and got the t shirt, so to speak, in terms of what has been tried  KellyInTexas and  Lind8 You could ring your consultant(s) PA's/secretaries, get their addresses (email addresses) and then write to them all marked urgent, on their PA's email contact details, addressed to them all. I have done this myself in the past. MaryF

[lupus-support1 Administrator]

Wishing you a complete recovery.

With good wishes,

Ros

[HollyHeski Administrator]

My surgery in the past is slightly different as I can't take warfarin, so my normal treatment is daily heparin, aspirin and clopidogrel.The aspirin and clopidogrel, was stopped 3 days prior, the heparin day before.

The heperin was started as soon as the surgeons thought safe of the risk of bleeding. (Gall bladder removal- in recovery room, angioplasty plastic- approx 12 hours later).

I wish they would listen to you!

You were on the foudaparinix (and note heart attack - sorry), was you OK with this? Ie no hives? Then that may be the answer until your INR is back to what it should be.

Note: Fondaparinux is an anticoagulant that shares the same pentasaccharide sequence as UFH and LMWH for the binding to antithrombin, however it has no extra chain and thus, is not considered a heparin product.

Can you ask to see the hospital haematologist to discuss your bridging plan?

I really wish you a smooth ride through the surgery and a successful recovery xx

[GinaD]

I have had a hip replacement, then 2years later, a knee replacement. Both times I bridged with enoxaprin ( sp?) and all went well. Good luck! Hope your docs come to recognize that they need to learn more about you specifics! Also hope you are home soon! Hospital stays are not fun!

[Lind8]

Thank you so much for your replies . We have agreeded on operstion on tuesdsy now. So Foundaparinyx 7.5mg till Monday morning. A platelet transfusion tuesday morning & to continue on low dose aspirin throughout & back on foudaparinix & warfarin 6 hours after op. Said operation will last approx 6 hours. I feel better now sonething extra in place. They are keeping me in now till after operation. But a good excuse to not be Xmas shopping. I will let you know how I am. Will be in ITU for a day or 2 afterwards & hopefully home before New year . Your all so lovely on this site

[Lure2 in reply to Lind8]

When I was operated for Thyroid gland in 2006 I had not started Warfarin but the hospital knew I had APS. I was worse after the operation as to my symptoms and the Doctors noticed this so later on I also agreed to start Warfarin.

If you only have a Specialist in APS who knows you and your symptoms he or she ought to know how to treat you I think.

Good Luck from Sweden on Tuesday. Let us hear how it goes for you.

[jetjetjet]

i have very erratic INR'S and Warfarin is my only choice , it is the only one strong enough for me even thought i have to do my blood INR every three days and wil for the rest of my life . i can use Enox when Bridging like for my last operations in the last couple of months lower intestinal hernia repairs .

[Lure2 in reply to jetjetjet]

Hi Jet,

So glad to hear from you! I am, as you know, also triple positive with high titres and Warfarin has helped me and been my lifesaver. I self test several times a week. What INR are you allowed to keep nowadays?

Kerstin

[jetjetjet in reply to Lure2]

HI My long time beautiful friend , Hows things in your lovely country ?? As to your question . I have been running low in my range . Right now this left lung issue has me NOT wanting to mess with it right now . If i go as low as 2.0 then i have to start my 120 ML Enox BUT i have been able to stay in the 2.3 range which is lower than my set range BUT the anti bio tic's Doxycycline 100 ml is most likely the reason for the lower INR readings 2.5 to 3.5 is my set acceptable range . I called the Dr's office yesterday to tell them that this constant coughing up of the flem hasn't stopped , it came back 4 days after last dose of my Doxycycline which was inmost part when i was lying down BUT yesterday it was when standing and walking around so . They found a speck in my bottom left lung , last x ray done 3 or 4 weeks ago in the ER . I was sent there by DR's office after a call because of this cough . Covid test they did while i was in the ER came back negative so that was ruled out as a possible cause ..?? I have a history since i was very young of congested lungs ?? but this isn't my normal coughing by far . This old body has seen it's better days I think my friend ,all worn out . LOL .

[Lure2 in reply to jetjetjet]

Do not give up on yourself! You are not old enough. Hope you have a Specialist around.

[jetjetjet in reply to Lure2]

Hi hope they get you straighten out why don't they keep you on the warfarin sulfate or don't you want to be on it ,here they require the the PT/INR one and with me every three days as you know . I think that is what you seem to do the best on and my Hematologist has always told me it is the strongest one i can have . Deb { my Hematologist } has expressed that if i ever became intolerant to Warfarin i would be in big trouble . are you still in Hospital my friend ??

[jetjetjet in reply to Lure2]

I am not giving up , Not to worry .- i get discouraged BUT just my rant and rave my friend. i am going to have to go on much more of this Doxycycline than thought after my first appointment with my DR Gupta BUT last appointment with one of my older Dr's Dr Linda Haller , one of my all time favorites from my past . I had her when she was doing her residency and was going into OBGYN medicine BUT she has come back to General Medicine and lucky for me she has come back to my DR offices so i will have her for at least the next 4 appointments because she is treating this left lung problem . So i lucked out there . But not to worry my Swedish Friend .Big Hugs to you . And praying for you . for the quickest recovery .

[jetjetjet]

But back on warfarin hemo says that is my only option now as warfarin only thing strong enough as i am an older male and a triple positive .

[Bloodredroses]

🙏🏻🙏🏻