Too much going on.: I am 55 yrs old and... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Too much going on.

Angeleyez profile image
4 Replies

I am 55 yrs old and going through alot in my life. In 2012 it started with phnewmonia and at that time I found out my sugar was way too high went into a coma came out of it. At that time they found I had a bloodclot in my right lung ..and they found a hiadle hernia .. And it was determined that I had lupus anticoagulant disorder..that had caused the clot to throw. They determined they could not remove the clot due to where it was laying unless it was life threatening. I went on many different treatments and bloodthinners. I kept my inr regulated for 3 yrs did great doing so. Then They put me on zeralto and boom when I had to go of of zeralto because of price issues and no insurance I started throwing clots. Started passing out 3 mths ago in feb in 2016 and ended up at a hospital where things started to go fast they determined that I had a cluster of clots that were blocking the blood flow of blood getting to my right lung . I had no insurance so they just let alot of things go that should have been done. I waited 3 mths at that point to get any sort of help. I finally got into uab and found out then I was in heart failure so they put me on 15 meds and sent me home to do phyical theropy and on meds to make veins bigger so they can operate on the lung. The phyical theropy did not work out I started getting shooting pains in my right lung from the back area into my heart and chest. Ended up back in the hospital again because of that and they they did some things they would not do when I did not have insurance. finding that there was a spot on the colon and a spot on the liver and on the breast that all showed up on a catscan. they are trying to get me stablized for my surgery I go monday on may 31st to uab. I am in Alabama .. just sharing my story hope its not too long.

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Angeleyez
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Ozchick profile image
Ozchick

You poor thing! If you were doing well on Warfarin why did they change and then stop all anticoags? If you have been diagnosed with APS you really should be taking anticoags for life otherwise you just end up with more clots and problems. I do hope it goes well for you on the 31st.

Mikki54 profile image
Mikki54

I'm so sorry. It sounds like you're having a terrible time. I do hope your surgery goes well. Make sure they get you back on a blood thinner asap after surgery! Hang in there, someone is always here to listen if you need it.

Best, Mikki (in California)

Nanny23 profile image
Nanny23

My goodness you have had a hard time. You definitely need to be on blood thinners. Lupus anticoagulant positive means you have APS. you will continue to clot unless on blood thinners. I hope your surgery goes well and you find a good dr. Who knows about APS. Stay on this sight many smart people on here who have experience with APS. GOOD LUCK AND GOD BLESS YOU

MaryF profile image
MaryFAdministrator

Hi, thanks for sharing all your information, I hope you will get the various treatments you deserve over time. MaryF

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