Connect
← Return to Heart Rhythm Conditions – Welcome to the group
Discussion
Heart Rhythm Conditions – Welcome to the group
Heart Rhythm Conditions | Last Active: 14 hours ago | Replies (926)Comment receiving replies
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
Replies to "Hi! Am 39 years of age. Last year on May 18 I had at least 2..."
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. :/
Connect
Hi!
I am so sorry for all you have been through. I hope and pray for you that better times are ahead.
ronnie