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Almost pure blood and blood clots in urine
Going through another episode of urinating almost pure blood (fresh looking) and passed a large blood clot yesterday. Have had CT scan and ultrasound and cystoscopy but nothing found so far. Also pain in left side/back that might be kidney pain. Anyone go through this? I have a call in to urologist and should hear back today. Also I had asked my NP for antibiotic, Cipro, which I took but on day 5 fresh blood showed up in urine again and I stopped. Asked for it in case of infection that might not be showing up. The last time I had gross hematuria and clots (and vomiting) the urologist's nurse saw me on emergency visit and prescribed nitrofur mac which appeared to clear it up, but started up again several weeks later. So frustrated and worried!
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@sofrustrated You are so correct. Our medical system is so frustrating. My son went for a lipid panel today, drove 60 miles, only to be told, just as the tech started to put the spigot needle in his arm that he was supposed to be fasting for 12-15 hours before the draw. The docs could have given him notice at least 12 hours prior. Truth is, you are your own best doctor, anyway. The folks in the white coats and Mercedes only look at one issue at a time, because that is the Medicare rule. I have about 350 CLINICALLY DOCUMENTED symptoms and signs of several dozen deleterious syndromes and genes. My Amyloidosis (Gelsolin) has about 200 of its own set. So get yourself a good whole genome (your whole package of genes and syndromes) clinical grade analysis, spend some time talking it over with a top geneticist, and THEN decide what to focus on. I have a bunch of syndromes which are quite serious. I think about 25 or so genes/syndromes referring to cardiomyopathy (cardiomegaly, long QRT, Arrhythmia, etc.), and several about Gelsolin Amyloidosis and Fukatin Limb Girdle Muscular Dystrophy, and some lesser damaging DNA issues such as encephalopathy, cancers, nerves. But the stuff about loss of hair and cutis laxa (sagging skin) and wide thumbs and cracking teeth and brittle finger and toe nails, I try not to worry about. Ignorance is sometimes a good practice.
Thank you for checking up. I am not good at navigating sites such as this but I do receive email notices from this site that I go into, i.e. this post from you. Since Good Friday my urine has returned to normal....normal color, very little bubbles in urine only periodically, and no pain in side or back. On March 29 my urologist did agree to give me a prophylactic nitrofurantoin mono 100 mg prescription to take nightly to keep infection at bay although he said it was not infection because it did not culture. I still believe this was infection. I am going to give it another week then stop nitro.mono and see what happens. He wants to do a repeat cystoscope May 11 and has ordered a CT urogram (waiting to hear from hospital for schedule) even though CT scan (without contrast) and subsequent ultra sound showed nothing abnormal, as did his first cystoscopy. I am debating whether to undergo all this extra testing if urine continues to be "normal". I have no symptoms of bladder cancer, etc.
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2 ReactionsI am happy that you are taking a positive attitude to all of this. And at the same time I am sharing your frustration at the unknowing. I want to commend you for your commitment to advocating for yourself and for working in communicating with your doctors.
I hope and I pray that the doctors can provide you with the information and the support for whatever you decide about any extra testing. If I or a loved one were in your situation, I would want to know: Is there a recommended time frame to do the tests to get the possible information? What kind of information would the tests provide? And what would be the available treatment options for a possible diagnosis? And my 'all time favorite' question is: What would you (doctor) say to your son if he were in my place?
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You should get an email notification for this message because I am sending it as a REPLY to your post.
I am going to send a 2nd post to you about how the New changes on Connect.
@so1frustrated, I have copied/pasted your @name here so that you will get an email notification.
If you want to better understand navigating this site, You can go to this link:
https://connect.mayoclinic.org/blog/about-connect/
I would suggest that to begin, you follow the steps to to go to
Group Directory
select > Kidney and Bladder
Click Follow (Now you are following the Kidney and Bladder Group)
If you want additional help you can let me know. There will be some short instructional videos coming out soon, too.
Here is a discussion where some members are actively learning about the new features. https://connect.mayoclinic.org/discussion/exercise-the-new-connect/
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2 ReactionsThank you so much! I am leaning towards no further testing until I see if "symptoms" (gross hematuria) occur again. The longest I can tell that I went without gross hematuria during all this was about 15 days after the one-time nitrofurontoin 7-day course I was prescribed on December 4 after seeing urologist's nurse when I had extreme blood and clots and vomiting the morning I saw her. The symptoms of green urine then cloudy urine reappeared December 24 but urologist "brushed it off" when I told him. If I go at least that long with no further symptoms I will wait; if the gross hematuria appears again I will undergo the CT urogram and another cystoscopy. Will keep all updated and of course "check back" on others going through similar situations. The only reason I am "leaning" this way is that all tests and scans also have their own possible "repercussions" and do not want to chance unless their is a definitive need for them.
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2 ReactionsRosemary 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!
@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.
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1 Reaction@so1frustrated, I think that you are doing the right thing to go ahead with the tests in May that you n had previously questioned. You have been enduring this repeated blood in urine for long enough with unsatisfactory results.
Although you have mentioned concern about the possible results, and the financial concerns for testing, as a mother of 2 sons, I want you to be able to return to your normal life.
Ask to speak with a social worker about financial resources.
My thoughts and prayers are with you.
@oldkarl, You are smarter than me! Or at least better versed in this category of medicinal advances. Thank you for sharing.
Old Karl, where and how can I get the $70 dollar test? This might be worth getting, although I have submitted a
"spit" sample to a group that is studying genetics in relation to autism, which I have; officially diagnosed Asperger's. Submission was 2 years ago, and have not heard anything back yet; they did say if they found a "life-threatening" gene they would inform but have yet to hear anything back. I am going to ask my NP Wednesday for a referral (hopefully "urgent") to a nephrologist/internal medicine doctor a little closer to home then the urologist, so will be getting both input. The urologist is so bent on trying to find cancer (which is not a bad thing), but afraid he might be missing other possibly crucial things. Do you have any doctor working with you, and are they able to help you? Thank you for following this and giving me some input .... IF you don't mind me asking, how old are you and when did all this start happening to you?