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OK so Last week I finally broke down and went to a Hematologist. Up to this point my protime had been managed by my PCP which he will continue to manage my Coumadin and Protime. The reason I went to see the Hematologist was to make sure that my PCP and Pulmonologist had all the bases covered so to speak. The Hematologist found several tests that my PCP hadn't run, mainly because he wasn't aware the test could be run while a person was on Coumadin. As many of you know I have never been diagnosed with any particular clotting disorder and have never had any DVT's. My PCP was certain my PE's were originating in my lungs or the right ventricle of my heart. Well turns out I do have the Lupus Anticoagulant syndrome or Antiphospholipid syndrome. and yes the clots were probably forming in my lungs or the right ventricle of my heart. The Hematologist says I am very fortunate that is where they decided to form as they could have formed in my brain or the left ventricle of my heart which would have been very very bad. I found out Lupus anticoagulant is an acquired syndrome and is not hereditary or genetic, which helps me rest easier knowing it is not something I can pass to my children or Grandchildren. How I acquired it is anybody's guess and not even the Hematologist has a clue. Some people just acquire it for no known reason. I guess it's OK knowing what the cause is, but the treatment will still remain the same. Only difference is if I clot again while on the Coumadin I will be put on Lovenox for life. The Hematologist told me I do have to be more diligent on checking my Protime every 2 weeks and have to be careful not to get below that magic number of 2.5. The Hematologist also told me that about 85% of people who have the Lupus anticoagulant syndrome fail on Coumadin. Meaning they usually clot while on Coumadin and have to have their protime at a higher level. A few still fail and end up on Lovenox. It's kind of weird if ya know what I mean knowing you have this thing going on inside of you. It's not a bad thing really, It's kind of good knowing. The other thing that is going on in my life lately is I have had a severe case of viral bronchitis that has made me feel as if I was coughing up a lung the last month and a half. The doctor actually did put me on antibiotics which confused me because viruses don't respond to antibiotics. I went to the ER one night my lung hurt so bad and the doctor told me OH you have emphysema. Scared the crap out of me, but my PCP informed me the ER doc was crazy and all i had was a bad case of Bronchitis. Anyway I am slowly getting to feeling a little bit better. Now if I can just get the mystery of why my knee keeps swelling and filling with fluid I'll be on the right track.
Ferr