Connect
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!
Like
Helpful
HugInterested in more discussions like this? Go to the Kidney & Bladder Support Group.
Connect
Rosemary, thank you for following this; it helps me to know I can come here. 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. I am scheduled for the CT urogram Monday May 3 (and 2nd cystoscopy May 11, but will hold off on that one if I have to based on what the urogram shows) and will ask for appointment after the CT so that he will have everything done so far. 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. I had applied for Medicare in North Carolina, but sadly make about $20 above the income limit for any help. If things come to worse, my family may be able to pitch in to help, as well as a friend. Thank you for your prayers and I too want to get back to a "normal" life. Sadly I just today learned my beloved sister in law, who is my same age and has been on antibiotics off and on for recurring bladder/kidney infection, is now in hospital for total colon infection. Praying for her especially as this is a very dangerous thing; also praying that she can get in with a nephrologist soon also which her doctor said she should contact one. Thank you for following this and giving me some input ....
-
Like -
Helpful -
Hug
1 ReactionHi 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/
-
Like -
Helpful -
Hug
1 ReactionThank you Colleen!
-
Like -
Helpful -
Hug
1 ReactionHi,@so1frustrated... You can get a $70 or $80 dollar test many places. The best I know of are Sequencing.com, Nebula Genetics, or even AncestryDNA. I would go with Sequencing.com or their partner, livingDNA.com, or with Nebulagen.com. They will send you a spit test, then do the sequencing of about a 1% of your total genome. If you want to do the whole genome, it is around $500. for my $70, I got a list of gene and variant and Chromosome numbers totaling about 1200 pages, with about 40 on each page. Sequencing.com will send you a list of your genes and your variants, and give you a number of reports, as well as a membership to read your gene list on Genome Explorer. You can take your pick of their reports and a full list of your genes. Best to sort out with them or Nebula, because that industry is changing so rapidly I cannot keep up with their offers. The second thing to do is get familiar with http://www.omim.org/browse/gene/2934. That is the Gelsolin Gene number. That will give you more info. Then check our http://www.hpo.jax./Gelsolin (or whatever gene or syndrome you are looking at). Be sure , If you talk to Sequencing or Nebula or Living DNA.com, to tell them I sent you. Now, all this started with me at conception. The doc gave me a good slap on the butt, and told my parents not to expect me to live to see my third birthday. I am 81 now. I work hard, physically all my life until about age 40, when my whole body started dumping on me. And here is a shot of my ECG, top left corner showing proof of Gelsolin as the two lines are not identical when magnified.. So Good luck.
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.
-
Like -
Helpful -
Hug
1 Reaction@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.
-
Like -
Helpful -
Hug
2 Reactions@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
-
Like -
Helpful -
Hug
2 ReactionsGinger 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
-
Like -
Helpful -
Hug
3 Reactions@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
-
Like -
Helpful -
Hug
1 ReactionThank you, yes, my boyfriend's daugher-in-law is going with me tomorrow and already is starting a list of questions, and had me tell my daughter to call her if she wanted something asked or clarified. She and my daughter, who is coming on Sunday, will be going with us on Monday for the surgery as well as Emily. My boyfriend is with me on all this but is hesitant to help with understanding as he has some problems himself due to severe accident in past and sometimes loses track of conversations. He was/is will to go in, but feels better that his daughter-in-law is going.
-
Like -
Helpful -
Hug
3 Reactions