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Wed, May 15 12:30pm · Interrupted ivc and deep vein thrombosis in Heart & Blood Health

Hi I’m reaching out to you I to have young daughter that has no IVC along with a complete azygos circulatory system as well as lupus anticoagulant syndrome. All this started when she was 17 with a simple Tonsillectomy. One week after the surgery we had her in the ER with a swollen discolored leg that was cold to the touch, they sent her home saying she had injured it in some way. They did do a Doppler of the leg on that visit which showed diminished flow to the limb. We took her home only to return the next morning leg was worse and she had started vomiting. Her dad who is a RN and at the time worked for a local cardiologist requested they do a D-dimer they refused to do the test telling us it would not be accurate because she had just had surgery the week before still they sent her home. Two days later I had to call an ambulance at 4am because she couldn’t breath. She was admitted that day the doctor came in and told us she had the worst occlusion of her leg he had ever seen. They ran the lupus anticoagulant test in the hospital. At her follow up appointment with the cardiologist is when we learned that she had this blood disorder. She continued to have issues with the effected leg (pain swelling) that would not resolve because of this she was sent to Stanford to see a cardiologist that specializes in the vascular system he felt she would benefit from a stent to help blood flow. We returned for this procedure only to be told it couldn’t be done the doctor need to do another test. We returned for this test which showed she has no lower circulatory system (no IVC, no iliac vein’s no Renal’s to speak of she has 3 vessels in her liver 2 veins 1 artery) her ovarian veins help with the return to her heart but the test did not get the top of the heart to see how it all ties in. Your post was from a year ago I’m hoping you see this and we could chat I would love to know what you have learned