Almost pure blood and blood clots in urine

Posted by so1frustrated @so1frustrated, Feb 5 7:11am

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!

@so1frustrated Welcome to Mayo Clinic Connect. Having blood in your urine is not normal, and having what appears to be pure blood is cause for alarm. It sounds like you have had this problem before, but nothing was found upon testing. Correct?

Personally, I would run, not walk, to the nearest emergency room, or your doctor. Something is not right, and insisting on treatment may save you. I have chronic kidney disease, and have gone through kidney infections. They are no fun! If there is an infection, they may need to culture and see what antibiotics the infection will respond to. Without the correct medication, the infection will come back.

Please consider heading to the doctor right away, and let me know what happens, will you?
Ginger

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Ginger, thank you for your response. I did see my NP yesterday and she has prescribed Bactrim now to see if I tolerate it better. She did another urine culture and had trace of white blood cells and has sent for another detailed analysis. Unfortunately every time my urine has been cultured nothing specific as far as bacteria is showing up (other than blood, protein, and amorphous sediment crystals), but she said it may be because it is so deep in my kidneys that it is diluted to the point of not showing in the urinalysis. She thinks this really may be a kidney infection; I pray she is right and I can tolerate the 10-day course of Bactrim (generic) and that it will be the right one to resolve this. This has been ongoing for about a year, but am so thankful that for now does not look like cancer based on the last FISH results, which my urologist said was "technically positive but not worrisome for cancer". I had cancer 36 years ago (breast) and received chemo of Cytoxan, methotrexate and 5Fu for six months, and Cytoxan can cause bladder cancer in later years. I am worried about kidney damage too, but am praying that has not happened yet. I see my urologist end of March and we'll see if this recurs (oh I pray not). If it does, perhaps we'll explore the avenue of chronix kidney disease. I pray you are doing well with it…. Thank you again! Will try to remember to update after Bactrim course….

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@so1frustrated

Ginger, thank you for your response. I did see my NP yesterday and she has prescribed Bactrim now to see if I tolerate it better. She did another urine culture and had trace of white blood cells and has sent for another detailed analysis. Unfortunately every time my urine has been cultured nothing specific as far as bacteria is showing up (other than blood, protein, and amorphous sediment crystals), but she said it may be because it is so deep in my kidneys that it is diluted to the point of not showing in the urinalysis. She thinks this really may be a kidney infection; I pray she is right and I can tolerate the 10-day course of Bactrim (generic) and that it will be the right one to resolve this. This has been ongoing for about a year, but am so thankful that for now does not look like cancer based on the last FISH results, which my urologist said was "technically positive but not worrisome for cancer". I had cancer 36 years ago (breast) and received chemo of Cytoxan, methotrexate and 5Fu for six months, and Cytoxan can cause bladder cancer in later years. I am worried about kidney damage too, but am praying that has not happened yet. I see my urologist end of March and we'll see if this recurs (oh I pray not). If it does, perhaps we'll explore the avenue of chronix kidney disease. I pray you are doing well with it…. Thank you again! Will try to remember to update after Bactrim course….

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@so1frustrated, I just now saw your post and although I have not experienced a similar condition as yours, I have a kidney transplant and have my share of UTI's. I want to ask if your doctor gave you any time line when you can expect the current Bactrim treatment to show a possible positive response. You should not have to wait 10 days to see if it is the right one. That is always one of my first questions for my doctor or pharmacist when I am prescribed an antibiotic.

I believe you are justified with your concern about your kidney health. You are scheduled for a visit with your urologist at end of March.
With your ongoing symptoms and past medical history, I would encourage you to call your urologist for an earlier appointment. in your request be sure to tell about your current symptoms, your frustration, and unsatisfactory antibiotic results. Will you think about this over the weekend? Can you make a call on Monday? What are your thoughts?

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@gingerw

@so1frustrated Welcome to Mayo Clinic Connect. Having blood in your urine is not normal, and having what appears to be pure blood is cause for alarm. It sounds like you have had this problem before, but nothing was found upon testing. Correct?

Personally, I would run, not walk, to the nearest emergency room, or your doctor. Something is not right, and insisting on treatment may save you. I have chronic kidney disease, and have gone through kidney infections. They are no fun! If there is an infection, they may need to culture and see what antibiotics the infection will respond to. Without the correct medication, the infection will come back.

Please consider heading to the doctor right away, and let me know what happens, will you?
Ginger

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Ginger, if I may ask, how did you find out you had kidney disease, and how did they diagnose it (was it diagnosed through a urologist)?

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@so1frustrated

Ginger, if I may ask, how did you find out you had kidney disease, and how did they diagnose it (was it diagnosed through a urologist)?

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@so1frustrated The formal diagnosis of my ultra-rare disease came in March 2015, after the first kidney biopsy [there have been more since then]. Prior to that, the doctor had noticed in my bloodwork that the kidney function indicator, seen on lab-work as eGFR, was not normal, and trending downwards over time. There are many causes of chronic kidney disease. Hereditary issues, or untreated high blood pressure, diabetes, etc. Here is an article from Mayo Clinic about CKD https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/symptoms-causes/syc-20354521.

A nephrologist is a doctor who specializes in the kidneys. A urologist specializes in the urinary tract, which includes kidneys, bladder, ureters.

How are you feeling today?
Ginger

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@gingerw

@so1frustrated Welcome to Mayo Clinic Connect. Having blood in your urine is not normal, and having what appears to be pure blood is cause for alarm. It sounds like you have had this problem before, but nothing was found upon testing. Correct?

Personally, I would run, not walk, to the nearest emergency room, or your doctor. Something is not right, and insisting on treatment may save you. I have chronic kidney disease, and have gone through kidney infections. They are no fun! If there is an infection, they may need to culture and see what antibiotics the infection will respond to. Without the correct medication, the infection will come back.

Please consider heading to the doctor right away, and let me know what happens, will you?
Ginger

Jump to this post

Hi Ginger, quick update. Had the full course of Bactrim, and was helping at first, but during treatment symptoms came back, off and on but not as bad. Today is follow-up with NP, and finished Bactrim (10-day course) last dose this past Monday morning. This morning when went to urinate after out of bed urinated heavy blood and blood clot again. Prior to this mostly honey colored, foamy urine, but occasionally almost normal looking urine so was hopeful . I am sure she will do urinalysis and culture again and praying that something shows up this time besides just blood, white cells and protein. Will ask for Keflex (generic) to try, asking for longest safe dosage. There is no sign of kidney or liver disease on CMP's; BUN, etc. within normal range. Hoping she is will to try one last round. Will definitely be following up with neurologist at end of March, but maybe sooner if NP wants me to and I can get in….really hard to schedule with them.

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@so1frustrated

Hi Ginger, quick update. Had the full course of Bactrim, and was helping at first, but during treatment symptoms came back, off and on but not as bad. Today is follow-up with NP, and finished Bactrim (10-day course) last dose this past Monday morning. This morning when went to urinate after out of bed urinated heavy blood and blood clot again. Prior to this mostly honey colored, foamy urine, but occasionally almost normal looking urine so was hopeful . I am sure she will do urinalysis and culture again and praying that something shows up this time besides just blood, white cells and protein. Will ask for Keflex (generic) to try, asking for longest safe dosage. There is no sign of kidney or liver disease on CMP's; BUN, etc. within normal range. Hoping she is will to try one last round. Will definitely be following up with neurologist at end of March, but maybe sooner if NP wants me to and I can get in….really hard to schedule with them.

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@so1frustrated Well, dang! I know you were hoping for an end to this! The last time I had a kidney infection, I was given a course of antibiotics, but it wasn't a long enough stint. My PC [first time it was a substitute dr] put me through a second course for 14 days. I don't recall which antibiotic was given, except that I had to get on probiotics to straighten out my gut, when everything was killed off.

With your continuing issue, you may have to advocate to get in as soon as possible. Let me know what happens, please.
Ginger

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Hey So Fust' ,
I TOTALLY agree , you should be sittin' in a ER waiting rm waiting for your name to be called… After going through Radiation treatments for Postrate Ca. I "occasionally" had episodes of passing clots & "tainted" urine so when it happened months later I paid it no mind.. Then it got so bad that I started to pass "Heinz 57" thick hard to pass pure blood…& headed to the ER.. After 4 days of "hell" (5 clogged cathitors) & once into the OR , a 2" Cancerous Tumor was found hiding behind a Blood clot in my Bladder ..I don't mean to suggest you have "the BIG C" but don't screw around.. It just goes to prove ,what you think you know, you don't know diddlie' … Good luck..&Stay Safe..

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@so1frustrated

Hi Ginger, quick update. Had the full course of Bactrim, and was helping at first, but during treatment symptoms came back, off and on but not as bad. Today is follow-up with NP, and finished Bactrim (10-day course) last dose this past Monday morning. This morning when went to urinate after out of bed urinated heavy blood and blood clot again. Prior to this mostly honey colored, foamy urine, but occasionally almost normal looking urine so was hopeful . I am sure she will do urinalysis and culture again and praying that something shows up this time besides just blood, white cells and protein. Will ask for Keflex (generic) to try, asking for longest safe dosage. There is no sign of kidney or liver disease on CMP's; BUN, etc. within normal range. Hoping she is will to try one last round. Will definitely be following up with neurologist at end of March, but maybe sooner if NP wants me to and I can get in….really hard to schedule with them.

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Be sure to have yourself checked for things like Gelsolin and FKTN. The quick and easy way is to look at your 12-lead EKG, at the sections marked aVR, aVL, VR, VL for signs of weak voltage to the heart, and check the QT time for length and equality between right and left cardiac signals. Any good cardiologist, and most GPs can help you. Then check out your genome for the deleterious genes that show with this area, cardiomyopathy and other symptoms. The Human Phenotype Ontology site is great for finding symptoms. My main impacted gene is number 2934. HPI.jax.app/browse/gene/2934 Put in your own gene number.

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Are you referring to possible heart problems? Just trying to understand. As a note, I only have Medicare for insurance and am on limited income. Just short of being able to get extra help, but alas a tad over the limit to qualify. I am already having to pay quite a bit and cannot afford anything not covered, at least in part, by Medicare. I had a stress test (treadmill) about 5 years ago and tested o.k. How did you get your genes checked, and how was this able to help you, and what was your problem? Thanks for any clarification you are willing to provide, and for your help.

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@glgraham

Hey So Fust' ,
I TOTALLY agree , you should be sittin' in a ER waiting rm waiting for your name to be called… After going through Radiation treatments for Postrate Ca. I "occasionally" had episodes of passing clots & "tainted" urine so when it happened months later I paid it no mind.. Then it got so bad that I started to pass "Heinz 57" thick hard to pass pure blood…& headed to the ER.. After 4 days of "hell" (5 clogged cathitors) & once into the OR , a 2" Cancerous Tumor was found hiding behind a Blood clot in my Bladder ..I don't mean to suggest you have "the BIG C" but don't screw around.. It just goes to prove ,what you think you know, you don't know diddlie' … Good luck..&Stay Safe..

Jump to this post

At this time would rather avoid the hospital! I have had abdominal CT scan, ultrasound of both kidneys and bladder, and cystoscope and nothing found. FISH test was "technically positive but not worrisome for cancer" according to urologist. He did want me to have a 3-month follow-up and am scheduled for March 29. Am currently working through my NP as she is much closer in distance (I have a driver who drives me through the city as I am autistic and can't handle traffic), and the urologist is a 1-1.5 hour drive away. I keep showing white blood cells in urine so we are trying to treat as infection for now…

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@so1frustrated…You sound like me, but I have finally figured out what my problem. I have both Gelsolin (Finnish Amyloidosis) and FKTN (Fukutin Limb Girdle Muscular Dystrophy, a ready partner of Gelsolin. If you have FKTN, you almost always have Gelsolin). The Gelsolin opens the cell Actin web to let its protein fibrils into almost any tissue. In my case, into all my sphincters (urinary tract, vascular, esophageal, etc) The sphincter muscles become leatherized, hard, and uncontrollable. So I have to use a very sturdy catheter to force it through the urinary sphincter to where it can take in and move out the urine. But getting the cath into the tube above the sphincter requires a strong push, so I sometimes have to push very hard to get it in. Then, for the next several days, My urine comes out dark even very brown, like maple syrup. Other times it is much paler. When it gets this way, I will often lose up to a half cup of blood on the bedsheets overnight. If you live anywhere near Knoxville TN, get in tough with Jonathan Wall at the U, and ask about their PET (Positron Emission Tomagraphy) program for Amyloidosis diagnosis. It is currently the most likely true dX system available.

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