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On going renal problems

Posted , 4 users are following.

Josh301196
Josh301196

Have been under the renal team for about 6 months now with heavy visible bleeding that they think is coming from the left kidney I’ve had every possible scan, and tests that come off the top of the head and still no further my latest test results showed protein is ++ and blood as +++. My kidney function is however normal, some days I’m getting swelling in my ankles and puffy eyes. 

Due to go back to see the consultant Wednesday has anything had this kind of thing before. Don’t want them to end up going we will review you in 6 months time etc. They said they think it could be some kind of kidney disease but unsure as to what at the moment any one able to share any light if they have had anything similar don’t really understand what ++ protein means 

Thanks 

0 likes, 14 replies

14 Replies

  • rick39522
    rick39522 Josh301196

    Posted

    Josh, the waiting and the unknown is probably the hardest part.  At least none of the doctors seem to be in any type of panic situation so hopefully they are not too worried about this.  I never saw lab results posted with ++ or +++ indications.  All tests I have every seen and had the results are always posted as numbers.  But I did a google search.  Having blood and protein in the urine can be caused by a variety of things.  It suggests infection, blood disorder (hepatitis), and other things, most of which also show swelling of the extremities.  Do a search on "what does blood +++ mean" and you will find many good descriptions of what is likely happening.  It does seem unusual that the doctor says they can not tell what is wrong.  Have you only gone to one doctor?  I have had doctors like this who just take forever and do not tell you what the possibilities are.  You have to be forceful and tell him/her you want to know what is the likely prognosis.  If he/she does not have a good answer, make an immediate appointment elsewhere.

    • Josh301196
      Josh301196 rick39522

      Posted

      Thank you so much I will have a look and I’ve been seen my the urology teams and renal teams and both have no idea what it could be but forever feeling in pain, tired, and sickness just want to know some answers 
    • marj01201
      marj01201 Josh301196

      Posted

      Absolutely you need answers! A fresh set of eyes (a new doctor) may be very helpful. I asked my first nephrologist after several appointments when he seemed perplexed and out of ideas if it was time to refer me to another specialist. If your doctors aren't willing to do that you can seek out another opinion on your own.

      But we have to constantly strive for answers; even if the answers aren't what we had hoped we would hear.

      Best wishes!

      Marj

    • Josh301196
      Josh301196 marj01201

      Posted

      They all just keep saying oh it will get better but I’ve head this heavy visible bleeding in my urine for months now and they even put in the letter his sample presented bright red. And still they just get passing me around and saying it should resolve but I’m not actually getting and answer etc even thought I have more protein aswell as blood in all my samples 
  • rick39522
    rick39522 Josh301196

    Posted

    Josh.  Keep us up to date on your progression.  It is just about impossible to understand how two sets of doctors can say that they have found blood and protein in higher than normal levels in you, and to know you are swelling and feel tired, and yet they can not give you a diagnosis.  Here is some information I found on the web.

    Both diabetes and high blood pressure can cause damage to the kidneys, which leads to proteinuria. Other types of kidney disease unrelated to diabetes or high blood pressure can also cause protein to leak into the urine. Examples of other causes of proteinuria include: Medications.Dec 15, 2017Protein in urine - 10 possible causes of proteinuria and frothy urinehttps://www.webmd.boots.com/a-to-z-guides/protein-in-urine-proteinuria

     

    • Josh301196
      Josh301196 rick39522

      Posted

      Thank you. They have no idea I have a artery angiogram which they put a coil in to embolize a small artery which they thought the bleeding was coming from however that hasn’t worked and I’m still bleeding. They are going to do a cystoscopy under general anaesthetic to go up to the kidney but they just aren’t giving me any answers. I’m getting half tempted to save and go to a private nephrologist. I will keep you up to date with the progress and any answers they may come up with
    • fran32391
      fran32391 Josh301196

      Posted

      Josh, I understand how frustrating it is to go through so much and still have more to go through in order to get some answers but stay on those Drs. Don't let up on them until they find the cause and solution so you can have some relief, it will be worth it in the long run. You're doing great, keep it up.

  • fran32391
    fran32391 Josh301196

    Posted

    If i was you i would call your Dr. and tell him you are still sick and in pain so you would like to know if he will be addressing these issues or if he is referring you to a specialist. If your Dr. Can't or won't help I would get a different Dr. 

    Long story short, I went to an ER, got brushed off. Went to a different ER, admitted me with acute kidney failure, kept me a week and told me I almost died. It's your body so YOU deside what you're going to do with it.

    • Josh301196
      Josh301196 fran32391

      Posted

      Thank you for replying! I’m due to go in tomorrow and see the consultant but I just have a strong feeling they will say they will see me in 6 weeks and see how I go! The pain is bad that I’m taking strong codiene when I can that won’t make me zoned out for a while. I ask them every time what could be causing the bleeding and protein etc and they have no idea as my kidney function is normal so they say it’s nothing bad but if someone has had bright red urine for some time To me that isn’t normal so tomorrow I’m going to demand answers 

      Ps hope your ok 

  • Josh301196
    Josh301196

    Posted

    So still no further after another month of anaesthetic’s, angiograms etc and still not closer to finding out have done another 24 hour urine and still no closer. They rang me yesterday to inform me I will going in on the 17th for another closer look up into the kidney and a very very close look around under another general anaesthetic. I know they are trying all they can to help but the pain, tiredness I just want to find out why I’m still have bright red urine 24 hours a day for a year now. I’m on tramadol to help the pain. Wondering what’s next!! 
    • marj01201
      marj01201 Josh301196

      Posted

      Josh, 

      This sounds like it's really difficult. How are you feeling at this point? I'm hoping this next round of tests will finally highlight the difficulty.

      Please let us know how that data turns out.

      Marj

    • rick39522
      rick39522 Josh301196

      Posted

      Josh, it must be terrible waiting.  Sometime I think the waiting is even worse than the knowing.  However it seems you have more than one doctor who is unsure what is wrong, so this must be a strange situation.  When you have the pain is it in the kidney area or just when you urinate or somewhere else?  It sounds like they have checked out your kidney in most every way possible and in a way it is good that they do not find anything wrong with it.  Obviously there is some time of bleeding going on somewhere in the urinary tract.  It is hard to be patient, but lets hope this next look inside will find the obvious problem and all will be well.
    • rick39522
      rick39522 Josh301196

      Posted

      Josh,

      ?I just did a google search on "red blood in urine but all kidney tests show nothing wrong".  I was shocked.  What you describe is very very common.  There are many sites where people have written in and had this exact same problem.  All kinds of tests finding nothing.  It seems in most cases it ends up to be one of three things (but browse the sites that are listed to get your own conclusions).  One is blood pressure that causes blood internally to the kidney.  Two is a kidney stone that is so tiny it does not show even on a scan, but  is lodged inside and causing slow bleed.  Third, there is no cause found and the bleeding just eventually stops and the cause is unknown.

    • Josh301196
      Josh301196 rick39522

      Posted

      They reckon it’s definitely coming from the left kidney but they can’t find where, the pain is in the kidney area. I have just done a 24 hour urine collection for the protein. They are looking at starting me on a tablet to help pass the clots as some of them are that big it gets very painful. 
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