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Almost pure blood and blood clots in urine
Kidney & Bladder | Last Active: May 15 9:54am | Replies (61)Comment receiving replies
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.
Replies to "QUICK UPDATE: Saw my NP on 5/15 due to bleeding/clots continuing and feeling ill. Had a..."
@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
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@so1frustrated I am speechless to learn of all that you are going thru. If you will accept a virtual hug, I am sending one for you with the intention of letting you know that I care.
I think that you deserve some answers as to why this suspected UTI has not responded to the current treatment. I hope and pray that the test on Monday will be a step in the right direction. Do you know when you will get the results of the urogram?
There is no need to be embarrassed by crying in front of your NP. Her office must have felt like a safe place to let yourself release your emotions. It is unfortunate that we, as a society frown on men crying or showing emotions. When I was diagnosed with liver disease and eventual organ transplant, my husband and I cried often. Your NP must know how stressful this is for you, or for any patient. I am happy that were able to talk with her.
May Monday go well for you.