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!

Wow, you have been and are going through a lot, but glad you have found your problem and know how to address it. Honestly am praying daily for wisdom on direction and protection from my God, and healing, however it is to come! I actually had a PET scan done 7 years ago when they were looking for cancer or other reasons for chronic hyponatremia, which is usually stable at between 132/133, but had dropped to 129. But praise God I am still here and kicking! So what you have been diagnosed is an autoimmune disease? I know I have autoimmune issues….

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@so1frustrated

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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Hi, @so1frustated; several things. First, any time you have a blood issue of any sort, the heart is involved. My Gelsolin is systemic, meaning that it can and will eventually take over every tissue and liquid of my body. To try to boil a genetic or any other sort of disease down to a single thing like heart problems, or cracking teeth, or easy bruising, is a waste of time and money. I know of no disease that touches only one type of cell in the body. There may be, but I have never heard of it. Second, a great place to start is Ambrygen.com. They offer a simple initial analysis of a small portion of your DNA for free, divided into two sections, Neuropathy and Heart. I settled on heart, I believe, and it got me started. Ancestrydna.com is a good second place. Then places like Nebula, Apollo, Sequencing.com, etc. At some point you will begin to find references to various National Institutes of Health (NIH). OMIM has a great listing of genes by six-digit numbers and gene numbers, based on symptoms and signs. Your doctor should help you with that. You can take that info to Human Phenotype Ontology and get a rather complete look at your syndrome. Two more things. 1) Do not give up. 2) Be patient. I have been struggling with my CRAP for 81 years now.

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@so1frustrated; I am hoping I can help you. First, any PET scan prior to the last few months, anywhere, will not be the same as this PET scan methodology using the new dyes and other chemicals and systems. Do go to the Ambrygen.com site, and get your analysis. You will need your doctor to talk to Medicare and tell them why you need the scan. Then they will pay for it. Second, then contact Ambrygen.com, and have them send you the kit. It is very easy. And just follow the directions. My gene number, at Human Phenotype Ontology (HPO.jax…….) is 2934). But get your doc to help you. If the doc refuses, get a new doc. Or talk to Bob Orlowski at MD Anderson in Houston or New Orleans.

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@so1frustrated

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, I am reading your posts, and I want to commend you for your determination as you deal with your health concerns. It is not an easy thing to do, even in the best of times. You are fortunate to have a connection with a nearby NP. I do not have any experience with your condition, but I do have a respect/appreciation for kidneys due to my transplant. I am going to be thinking of you and hoping that your urologist appointment later this month goes well for you.

Will your NP be forwarding your medical records to the urologist so that he can refer to it? Are you making a list of the questions that you would like to ask?
How are you feeling these days?

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@rosemarya

@so1frustrated, I am reading your posts, and I want to commend you for your determination as you deal with your health concerns. It is not an easy thing to do, even in the best of times. You are fortunate to have a connection with a nearby NP. I do not have any experience with your condition, but I do have a respect/appreciation for kidneys due to my transplant. I am going to be thinking of you and hoping that your urologist appointment later this month goes well for you.

Will your NP be forwarding your medical records to the urologist so that he can refer to it? Are you making a list of the questions that you would like to ask?
How are you feeling these days?

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Rosemary, thank you for your concern and encouragement. I am presently on day 4 of cephalexin 500 mg., and am seeing improvement in my urine color. I am hoping this will resolve the issue. My NP had me on 250 mg. 2 time a day but I talked her into increasing to full dose as even the lesser dose seemed to be helping a little. I still have some foamy urine and darker urine in afternoon and evening, but no longer seeing blood and overall improvement in urine color. Will be finishing course of antibiotic and am praying this is the problem (unidentified kidney infection). If this totally clears up will probably cancel urologist appointment and will go back only if problem comes about again. This has been a puzzle even for the urologist. Will update after finishing this last course of antibiotics. My NP has been forwarding all their results and actions so everyone is up to speed.

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@gingerw

@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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Thank you for following me in this. Sadly after a week of having normal looking urine and thinking all was fine after taking 2 courses of Cephalexin 500 mg 2x/day, the blood appeared again yesterday morning, the morning of seeing the urologist for follow-up. He is now scheduling me for a CT Urogram as 1st CT was done without contrast. My urine has been showing (in progression): blood of 3+ consistently; protein of 2+, then trace, now 1+; and leukocyte esterase of trace/trace/now 1+. All else is normal, and the blood panel my NP did shows normal kidney and liver function. He (Urologist) has also scheduled me for another cystoscopy in case he missed something the first time around. His focus is on cancer of the bladder because of previous history, although nothing has shown up yet. He keeps saying that he does not think it is infection because nothing is showing up on the culture. Please keep me in prayer if you are a praying person, and thank you for being there with advice and encouragement. Oh, he wanted to do another FISH test as the last urine cytology from my NP showed atypical cells again but I had to decline because of cost.

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@so1frustrated

Thank you for following me in this. Sadly after a week of having normal looking urine and thinking all was fine after taking 2 courses of Cephalexin 500 mg 2x/day, the blood appeared again yesterday morning, the morning of seeing the urologist for follow-up. He is now scheduling me for a CT Urogram as 1st CT was done without contrast. My urine has been showing (in progression): blood of 3+ consistently; protein of 2+, then trace, now 1+; and leukocyte esterase of trace/trace/now 1+. All else is normal, and the blood panel my NP did shows normal kidney and liver function. He (Urologist) has also scheduled me for another cystoscopy in case he missed something the first time around. His focus is on cancer of the bladder because of previous history, although nothing has shown up yet. He keeps saying that he does not think it is infection because nothing is showing up on the culture. Please keep me in prayer if you are a praying person, and thank you for being there with advice and encouragement. Oh, he wanted to do another FISH test as the last urine cytology from my NP showed atypical cells again but I had to decline because of cost.

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@so1frustrated, thank goodness your healthcare team is staying on top of this and that you are being closely watched and tested to figure things out. I will certainly keep you in my thoughts. I also want to let you know that you are not alone. Whatever the diagnosis, members will walk the journey with you and have relevant experiences to share. The community is a good place to also talk about your fears, concerns, and joys as you navigate the waiting game – in some respects, the hardest part. Do you have to wait long for the cystoscopy?

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@colleenyoung

@so1frustrated, thank goodness your healthcare team is staying on top of this and that you are being closely watched and tested to figure things out. I will certainly keep you in my thoughts. I also want to let you know that you are not alone. Whatever the diagnosis, members will walk the journey with you and have relevant experiences to share. The community is a good place to also talk about your fears, concerns, and joys as you navigate the waiting game – in some respects, the hardest part. Do you have to wait long for the cystoscopy?

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May 11 for the cystoscopy. The first one he did December 28 and all looked normal, as did the ultrasound with full bladder and voided well. It is very hard and frustrating that so far all has shown "normal" except blood in urine and of course the protein and leukocytes. Yes, very hard to "play" the waiting game as there is no obvious cause to pinpoint. If this is serious, hopefully we're finding in time.

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@so1frustrated

May 11 for the cystoscopy. The first one he did December 28 and all looked normal, as did the ultrasound with full bladder and voided well. It is very hard and frustrating that so far all has shown "normal" except blood in urine and of course the protein and leukocytes. Yes, very hard to "play" the waiting game as there is no obvious cause to pinpoint. If this is serious, hopefully we're finding in time.

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@so1frustrated, I’ve had you on my mind today. I hope that you are feeling okay in spite of all of that is going on. I know that you are so disappointed that the antibiotic did not give the results that we all wanted for you. My prayers will continue for you and for your medical providers that you will get to the bottom of this. And that a course of treatment will follow.

What do you plan to do between now and your May appointment? Has your urologist offered any treatment or follow up between now and then?

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Sounds like some form of Amyloidosis to me, perhaps Gelsolin. That is what I went through.

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@oldkarl

Sounds like some form of Amyloidosis to me, perhaps Gelsolin. That is what I went through.

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Karl, could you please explain this to me in clear laymen's terms? I would like to understand so we can get a better direction. The bleeding is increasing again with tiny clots. I am waiting to here from the hospital as to when they will get me in for CT scan with contrast, a Urogram. It is acting so much like an infection but no bacteria is showing up. Thank you for your response and understanding! Please know that I can only do what Medicare covers as I am low income but not low enough for assistance.

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@rosemarya

@so1frustrated, I’ve had you on my mind today. I hope that you are feeling okay in spite of all of that is going on. I know that you are so disappointed that the antibiotic did not give the results that we all wanted for you. My prayers will continue for you and for your medical providers that you will get to the bottom of this. And that a course of treatment will follow.

What do you plan to do between now and your May appointment? Has your urologist offered any treatment or follow up between now and then?

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Rosemary, thank you so much for your continued prayers, and I am praying in agreement with you, and also for a miraculous healing that is possible. The only thing urologist has offered and provided is a prophylactic Nitrofurantoin mono 100mg to take at night to hold off further infection; however still do not think had enough of cephalexin to eliminate but am just monitoring blood in urine for now and praying. Seems that the worst of it comes out when I get up for the bathroom during night (get up maybe 2x's night) and first thing in morning, then looks better during day. It was "bloodier" last night than has been but not as bad as last round and praying that it does not get that bad especially not bad enough to produce clots again. The last clot I passed did halt my stream for a couple of seconds but thankfully came out. So for now getting on with life, praying, and self-monitoring. If it starts to get alarming again I will call Urologist and try to get in (their office however is over an hour drive which I have to have my companion, who is physically disabled, drive me….being autistic I cannot handle driving in traffic and urologist center is in Virginia Beach). If they don't respond I would call my NP. I did find out she did a cytology evaluation and apparently came back with atypical cells again, but I believe that can also be from infection. So puzzling, but trusting in God to get me through. Thank you so much for your prayers and support. Have a blessed Resurrection weekend!

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