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Almost pure blood and blood clots in urine

Kidney & Bladder | Last Active: May 15 9:54am | Replies (61)

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@so1frustrated

Rosemary and others, just to update....the bleeding and passing clots started again so I saw my NP on 4/15 and my leukocyte count up to 2+ and protein 2+, leukocytes being 1+ and protein trace at urologist on 3/29. So I talked her into trying 500mg cephalexin every 8 hours instead of 12 for 14 day. The day after I started the antibiotic (Fri. 4/16) I passed A LOT of blood and clots then back to dark yellow that night. 4 days later on the 20th blood back in the evening and when got up to urinate at around 2am had to push to get urine started....really big clot passed, but thankfully passed. Reddish urine continued, then through today mostly between cola colored and amber, until just now when passed fresh blood again and a small clot. Have not heard back on latest culture but will call tomorrow....nothing showing up in culture so urologist saying not an infection, but confused because of leukocytes. I have follow-up with my NP on Wednesday the 28th for another urine dip stick test to see where leukocytes are at, and will ask for another kidney function test (eGFR) and see if there is any test for heart problems, as am now scheduled for CT urogram on May 3. Has anyone had a CT urogram and did it show anything CT scan and Renal ultrasound did not? Thank you all for your support and being there!

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Replies to "Rosemary and others, just to update....the bleeding and passing clots started again so I saw my..."

@so1frustrated Sounds like you have either what I have or something similar. Have you had a genetic analysis? Even the $70 version might tell you what you need to know. Mine uncovered many deleterious genes and syndromes, including Gelsolin, RyR2, FKTN, a bunch of leukemias and anemias, and many other things. It appears the GSN (Gelsolin) may be the buggar here. Seems my sphincter has been invaded by the GSN and some of its helpers. They have leatherized and solidified the sphincter muscles to the point that I cannot release that valve without force from a heavy plastic catheter, which I get from 180 Medical. It is also making a mess of my skin, nerves, heart, system valves everywhere, etc. I bleed up to 1/4 cup of clots and considerable un-clotted blood almost every day. The doctors don't have a clue outside my genetic work. A neurologist and/or oncologist might help you. I had my work done by several companies, including Ambrygen, AncestryDNA, Sequencing.com, LivingDNA, Nebula, and a few others. Eventually I received an "Expression Atlas" which told me how many genes of the GSN were impacting various sites in me. 53 sites, and about 10,000 genes, looks like. And, along with this, I have a bunch of others not involved with GSN, including mis-guided Platelets, anemias, leukemias, etc.