Blood thinners??? FOR LIFE??? I was only 19, had just given birth to my son, was experiencing my first DVT (arterial no less), and was trying to come to terms with the fact that I was going to be just like my Mom! She had suffered with numerous DVTs (at least one year) from the time I was 5 years old. I was aware of what was in store for me. There wasn’t a medical diagnosis for whatever this blood disorder was, I knew what the treatment was….RAT POISON…COUMADIN!!! I had seen what that entailed. Doctors office visits for regular INRs, changes in doseages consistently, and the bleed outs and bruising. I didn’t want anything to do with it! Then 20÷ years later, I threw yet another DVT while therapeutic. New doctor, new technology, new medication…Lovenox. I took this for a year religiously while suffering consistent sidhe effects of nausea and hair loss. Then another new medication….Arixtra. what a wonderful change. No more side effects! Instead, again while within treatment guidelines, I threw the worst and most clots ever. A pulmonary embolism saddle clot along with bilateral lower extremity DVTs. Currently I am on Xeralto, another new medication on the market, and although its only been a month, it seems to be doing its job…I hope. Here is a very good article from one of my favorite resource sites regarding living with blood thinners. What blood thinners are you on? Are you suffering from side effects? Do you get frustrated
My current battle with my genetic clotting disorder..I survived!!!
Christmas Day 2012:
Just barely three weeks ago…I cheated death by surviving the coroner’s ‘bread and butter’. I threw a saddle clot which stopped my heart for an unknown amount of time…but merely seconds on a clock. This disease/disorder/deficiency will eventually kill me unless human accident gets me first. I’m trying to find others to gather with me in searching for more answers to many unknown questions and alternative preventative treatments. If not a cure in my lifetime, than a cure for my son and his unborn children….Please help me in the fight against this silent killer
Post PE precautions where in order ESPECIALLY when the Orkin man showed up for his monthly visits at my work facility…
This is my original story:
I am 2nd generation ATIII Congenital having my first DVT/VTE at age 19 which wasn’t diagnosed immediately as I was pregnant at the time. It wasn’t until after the delivery of my son and only after the insistent urging of my mother, that the possibility of my having this at that age was grudgingly given in too and after a very painful venogram, was finally diagnosed and was not just venous, but arterial. Why was my mother so insistent about what it was? It was because she had lived with recurring DVT/VTE’s for over half her life with her first being diagnosed directly after having given birth to me. My mother was the first generation, having skipped a generation through my grandfather. My sister is also an active ATIII Congenital. As of two weeks ago, I thought the only worry or concern I would have would be that any future granddaughters of mine would someday become active through my son, as in the years that I have researched ATIII the most common and recurring thread is that, usually, men are carriers not actively diagnosed. That has all now changed as of June 6, 2011 when my 22 year-old son was rushed to the emergency room for the third time in just as many days. He, once again, had a CT scan done of his head which revealed something perplexing to the physicians. The doctors were stumped until I arrived at the hospital where he had been taken and told them about our family genetic disorder. The final diagnosis was cerebral sinus venous thrombosis and accompanying brain bleed concurrent with stroke and seizures secondary to ATIII Congenital. He too has now been tested and diagnosed with ATIII Congenital.
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