Almost pure blood and blood clots in urine

@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.

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?

Hi sofrustrated,
There are a number of genetic testing companies out there. Do your homework to know what you are paying for. @johnbishop and @wsh66 provide some cost and companies in this discussion starting here: https://connect.mayoclinic.org/comment/246621/

You can also call Mayo Clinic's pharmacogenetics team to learn more and ask questions about different tests, their validity and associated costs. See more info here: https://www.mayo.edu/research/centers-programs/center-individualized-medicine/patient-care/pharmacogenomics
It's free to ask questions. 🙂

As an aside, I also want to invite you to the adult Autism support group here on Connect:
- Autism (ASD) https://connect.mayoclinic.org/group/autism/

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?

@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?

QUICK UPDATE: Saw my NP on 5/15 due to bleeding/clots continuing and feeling ill. Had a slight fever (I never run fevers) and leukocyte count and protein count up again. She agreed to and decided to up dose of cephalexin to 500 mg. 3x/day for 14 days (not max. amount yet which is 4x/day) instead of 2x (stated wrongly before, had only been on 1 10-day course of 2x/day prior). Was starting to help then on Sat. 5/24 I became extremely dizzy, sat on chair then my companion said I "fell out" on floor, and when I came to I vomited right beside on floor! He called 911, when into ER and after all tests, etc. concluded I passed out due to dehydration and low sodium, which got down to 128....it had been at 129 in doctors office. They would not give me my antibiotic prescribed by my doctor because I did not culture there either (!!!!!), and by the time I left on Monday afternoon bloody urine started to appear again. I had a follow-up appointment scheduled with my NP on Wednesday thankfully that we set up prior to my starting this last round of antibiotics. My fever was 99.8, and still showing protein, so we decided to go with the strongest course of cephalexin (4x/day) for 14 days, and see what the CT urogram shows which is being done Monday May 3, then as she said, we go from there! To my "embarrassment" I actually cried in front of my NP and told her I was tired of being different (autism, hard to diagnose, etc.) and just wanted to be normal! My sister in law has also been going through "unculturable" UTI's; she is my age. Will update when get results from urogram.

QUICK UPDATE: Saw my NP on 5/15 due to bleeding/clots continuing and feeling ill. Had a slight fever (I never run fevers) and leukocyte count and protein count up again. She agreed to and decided to up dose of cephalexin to 500 mg. 3x/day for 14 days (not max. amount yet which is 4x/day) instead of 2x (stated wrongly before, had only been on 1 10-day course of 2x/day prior). Was starting to help then on Sat. 5/24 I became extremely dizzy, sat on chair then my companion said I "fell out" on floor, and when I came to I vomited right beside on floor! He called 911, when into ER and after all tests, etc. concluded I passed out due to dehydration and low sodium, which got down to 128....it had been at 129 in doctors office. They would not give me my antibiotic prescribed by my doctor because I did not culture there either (!!!!!), and by the time I left on Monday afternoon bloody urine started to appear again. I had a follow-up appointment scheduled with my NP on Wednesday thankfully that we set up prior to my starting this last round of antibiotics. My fever was 99.8, and still showing protein, so we decided to go with the strongest course of cephalexin (4x/day) for 14 days, and see what the CT urogram shows which is being done Monday May 3, then as she said, we go from there! To my "embarrassment" I actually cried in front of my NP and told her I was tired of being different (autism, hard to diagnose, etc.) and just wanted to be normal! My sister in law has also been going through "unculturable" UTI's; she is my age. Will update when get results from urogram.

@so1frustrated I have read some of your posts here, and please allow me a bit of time to read the entire thread. My brain fog gets in the way of clear thinking, sometimes. That said, I feel the need to reach out immediately to you.

Crying is a release. Of emotions, of stress. Gosh only knows you have had your fair share of all this recently! I wager you might have felt embarrassed to cry, but also some relief. As a fellow Aspie, we spend a lot of time masking how we are really doing/feeling. We get frustrated at not being heard/understood in a manner we can relate to. We get angry at feeling we are not taken seriously. You have kept detailed and great notes. Attention to detail is one of our strengths, sometimes to the chagrin of the medical team.

Here is a link to giving you the difference between a nephrologist and urologist: https://www.healthline.com/health/what-is-a-nephrologist#tests-and-procedures. Is there a teaching hospital near you, or university-linked medical facility? To go this long with the situation you are facing, must be depressing, not to add in energy depleting. I will pop back in a bit later when I have had a chance to read this entire discussion.
Ginger

Ginger thank you for responding as a fellow Aspie, and to all others (hope you can see this), here is LATEST UPDATE FROM CT UROGRAM yesterday:. The radiologist who reviewed called my Urologist immediately. Copied from the on-line report posted early this morning: IMPRESSION:
Ill-defined expansile mass in the right renal pelvis and proximal ureter
producing moderate right pelvocaliectasis and moderate to severe ureterectasis
of the proximal ureter with abrupt tapering. Findings are highly suspicious for
urothelial carcinoma.
Got a call from my urologist last night who said he is referring me to another urologist in their group who can see me sooner for surgical evaluation as wants to move fast. The "new" urologist's office just called me and will be seeing for pre-op meeting tomorrow and the surgery is scheduled for Monday. OH CRAP, here we go. Needless to say I am scared and nervous but knowing my God is my God and in charge, no matter the outcome, and can see His hand in intervention and direction. Hoping all of you who have been involved in my posts can see this. Thank you

@so1frustrated I hope you are feeling a bit of relief, knowing things have ramped up and you are getting help. Many will tell you we are handed only what we can handle. Take time to have a cup of tea. Write out questions [like, "why did this take so long to do more diagnostic testing?"], concerns, etc. Do you have friends or family nearby, to turn to for support? Knowing you will be hearing a lot of new terms and thoughts, will they allow you a second person with you to also hear and take notes, or perhaps record the appointment?

Remember we are here for you, and will support you however we may be able to.
Ginger