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@skymya

Hi!
Am 39 years of age. Last year on May 18 I had at least 2 heart attacks, blood clots, complete rental shutdown and grand mal seizures. I was in a coma for 9 days and it took 75 days for me to get back home to my 5 kids/husband. I now have a irregular heart beat,heart damage, beats to fast tachycardia and my blood doctor thinks i have APLS a blood clot autoimmune disorder also so blood thinners for the rest of my life.. I was supposed to have a EPS ablation tomorrow with the option for a defibrillator but the doc office called now its next month. I had chest pain off and on for a few years but just blew it off as stress/panic attacks. My mother had Afib for a number of years and two ablation later is Afib free now. Happy to start talking to others and learning their stories.
Amber

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Replies to "Hi! Am 39 years of age. Last year on May 18 I had at least 2..."

Hi!
I am so sorry for all you have been through. I hope and pray for you that better times are ahead.
ronnie

Hi @skymya,

I can only imagine the stress of all that you\'ve been through! Thank you for joining Connect, and sharing your story. Here\'s some information about Antiphospholipid syndrome (APLS) from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/antiphospholipid-syndrome/symptoms-causes/syc-20355831

I\'d also like to invite @soitis4590 and @lena999 to join the conversation and share their experiences. You can view @soitis4590\'s posts here: https://connect.mayoclinic.org/discussion/antiphospholipid-and-lyme-disease/

Although this is an older discussion, https://connect.mayoclinic.org/discussion/antiphospholipid-antibody-syndrom/, I hope @taogirl2 @colettehellerud @lagata are keeping well, and will return to share their insights as well.

@skymya, may I ask why the ablation was postponed?

It was postponed due to the doctor not being available.
It was confirmed yesterday that i do have primary APLS and that I dont have lupus.
I also have bilateral footdrop that is finally almost gone after months of PT and have been walking unaided for 3 months now with just a few issues with balance.
I have been having a bit of side pain. So am afraid my kidneys might be having issues again and don't wish to go back on dialysis again if i can avoid it. My last dialysis catheter developed multi clots in my jugular. :/
Its been a lot this last year that's for sure but am doing great.

@skymya I appreciate your sharing your most recent diagnosis of APLS. I would be interested in hearing more about that. Could you explain how that was diagnosed?

Teresa

Sure.. Its usually only diagnosed after an issue has happened such as a blood clot. They do a blood draw and check for 3 different things, anticardiolipin, beta-2 glycoprotein I (β2GPI), and lupus anticoagulant. I came back neg on the lupus but have both of the others. Then a 12 weeks wait or so and repeat the test again because some blood thinners and heart attack meds can give a false positive after a major event such as I unfortunately had. Yesterday was my second positive test results.
I also cant follow my own INR at home due to error reading caused by the APLS proteins.

If I had followed up with a doctor after i had blood clots 3 days after giving birth 17 years ago with preeclampsia, both warning signs of APLS, I might have been diagnosed earlier.

@skymya I appreciate the information. Is there a treatment for APLS?

Teresa

Only treatment is Blood Thinners and as i have had different clots in different parts of my body it will be for life now. :/

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