On clexane because of madly unstable INR

[Debs_22]

Hi all

I had my aortic valve replaced and my aortic arch repaired due to aneurysm, in December 2016. Did loads of research and decided, as I was only 55, to have a mechanical valve. The one big mistake I made was not researching warfarin! From day one, I never had a stable INR, with it ranging from 1.1 to >8 st any given time. To cut a long story short, I was admitted to hospital for them to stabilise me 2 weeks after surgery - loaded with warfarin and heparin. They sent me home after 5 days, still with an INR of 1.1! Since then, I’ve been to my local INR specialist clinic (local being a 40 mile round trip), been put on sinthrome, and now (after my GP telling me I am “an unstable liability”) I am injecting clexane daily instead of taking oral anticoagulants. In one way I’m relieved to be doing this as I felt my life was being taken over by sometimes thrice weekly visits to the GP or hospital to get my INR checked, but on the other hand my stomach is bruised and lumpy and I’m worried about my osteoporosis getting worse! I have never seen a haematologist regarding my INR, when approached initially by my GP he was told by the haematologist that it was a cardiology matter. My cardiac surgeon said it was a haematology matter! Nobody seemed to want to take responsibility!

Last week I saw a new cardiologist. He told me that my GP (who I haven’t seen since he put me in clexane in May 2018) has been corresponding with him and a haematologist (who I’ve never seen) and the haematologist has told him that she is at a loss to find a reason why my INR levels are so unstable. So, the new cardiologist has suggested to me that the only thing he can think of doing is asking a cardiac surgeon to replace my mechanical valve with a biological valve, although he says they may refuse as there is no problem with the valve itself and it is a more risky op than when they do it the first time. I am totally at a loss as to what to think! I feel really vulnerable being on the clexane, I don’t want to go back onto warfarin and be traipsing back and forth to the GP all the time. Has anybody else been in a similar situation or does anybody have any advice please? I just feel abandoned!

Thanks for reading 😊

[HollyHeski Administrator]

Hi, have you been diagnosed with Hughes/APS?

Our answers will only relate if you have so I just wanted to check.

[Debs_22 in reply to HollyHeski]

Oh I’m sorry ... I thought I was on the warfarin part ... can’t get the hang of this site!

[Debs_22]

Thank you very much for your advice... I really appreciate it. No I don’t have APS. I really don’t want to have repeat surgery - I recovered so well from the first one! I was taught how to inject by the INR nurse but always bleed/bruise after blood tests/injections so maybe it’s just the way I am. 😕

[Wittycjt]

Ive had repair done not replacement but i have APS and there is no way i would have this surgery again. I was scared the first time, i cant imagine it a second time... I know the adjustment you are up against but try to accomplish the injections as surgery is very risky, any time the heart is cut open...is a life risk. I sometimes inject in the fatty area of where my hip bends on the outside hip where i can pinch up fat and you can alternate from side to side. I inject every twelve hours so I inject alot and find if i inject here alternatively it gives my abdomen a rest and time to heal. Don’t give up just yet... it takes a little time but you can do it !

[Debs_22 in reply to Wittycjt]

Ah thank you for the encouragement! I really don’t want the surgery again and think I would refuse if offered. I’ll try the hip area as well... thanks for the tips! 😊

[Wittycjt in reply to Debs_22]

Remember to pinch up, inject slowly, then apply strong pressure for a good 30 seconds if not a minute.. you will see it will help, you just cant be in a hurry its not worth it, keep us posted we like to hear about successes! Cindy

[Debs_22 in reply to Wittycjt]

Thanks Wittycjt, I will! 😊

[Debs_22]

Thank you ... much appreciated 😊