I am a 41 yr old female with a long history of kidney problems countless UTI's, kidney stones, bladder and kidney infections , enlarged kidney and urine retention to the point of needing to be stretched. Long history of unexplained 4+ or more blood in urine and high protein levels - 9 x out of 10.
The last 5 days I have been urinating cola colored urine - sometimes very noticable blood - no pain. very tired , no appretite and went from 107 lbs to 100 lbs
I went to my GP urine came back very high RBC , no infection (which I suspected I know what they feel like). He told me to come back the following day he was going to do an xray.
Went back following day - RBC 300 protein went from 10 to 30 he sent me to the ER.
Long story short (er was a nightmare) CT revealed 6mm stone sitting in left kidney and multiple cysts in both kidneys. Doc never returned to ask him questions.
Family history of PKD - motality that I am aware of 2 living 2
I am awaiting appointment to see neph
Any advice, commonality , suggestions would be so very much appreciated.
unfortunetly i don't have alot of time right now to actually get into everything i just wanted to mention on this particular disease. i DO have this too,but not only in my kidneys, i also have it in my liver too. when they did that CT, did they happen to notice if your liver is also loaded with cysts? its just the cola colored urine can also be a very strong sign of liver function impairment as well as simply 'just" RBCs. when was the last time they did an ultrasound on you to simply check out the kidneys and the liver and the very important blood flow thru that portal vein in the liver? how are your actual liver labs looking at this point?
sorry i cannot get into everything but hopefully i will be able to pop back in tomorrow. knowing whether or not this is 'just" strictly kidney involvement or also liver would be very helpful right now to simply know. when exactly did you find out that you even had PKD? i did not even have a clue we even had this running in my moms side of the family or that i had this my whole life til my youngest son went into liver failure from a mutated form when he was only 12 years old. thats when i had a scan and found it. i was almost 40 by that time. just insane really how this particular kidney disease plays out, espescially within particular family units. it can and does change for some. i will be back hon, Marcia
I posted here a while back , reposting due to update.
Almost 2 months ago I started passing cola colored urine. It then progressed to black, dark red and just plain blood I mean I was bleeding not just urinating blood. RBC in urine very high
My symptoms went from just being fatigued to
Severe itchy (burning - stinging) skin all over my body
Electric sensations on my head
Metallic taste (constant) sometimes sweet
Flank and abdominal spasms(intense)
Foamy urine/ high levels of protein
Pain in the top of my shoulders , down my right arm excruciating pain
Bodily functions drying up
and more weird symptoms
At times I would feel better for a day and it would start all over, I recently felt better for a week and it ccame back with a vengence.
I have a family history of PKD and recently found out Alport's syndrome as well.
Has anyone gone through this or have any ideas?
I have no medical insurance , I was supposed to see a neph except I did not have the cash they require up front.
Please let me know if anyone as gone through this or has heard of something like this?
I have been to my GP , he said he could not help me because he doesn't know what is wrong and it is not my liver all liver test came back negative.
i REALLY do feel for you with having this going on and no health ins too. this is the sickest part of why we truely NEED ins coverage for everyone. without ins, i am wondering how you can manitain a 'normal' life and good outcome here ya know? the one possibilty that i can think of off hand here is when it comes to major kidney issues, there is a possibility of you possibly qualifying for certain couny/federal programs. i would contact any local "help' orginizations within like your county(usually found in the very front part of your local phone book?) and see if they could possibly help you out with some ideas as far as how you CAN obtain good medical care while dealing with this too. the other thing would be a possible SSI award just to be able to get on medicare? in some cases with the kidneys being the problem, they do tend to treat this a bit differently than with other illnesses or injuries that would make someone potentially qualify in other cases? but this would really also depend upon your income too.
the one thing about having PKD is that it is simply a totally progrssive type of disease process that you really cannot 'stop" or cure since no cures are even on the horizon yet. so it comes down to more 'management' of the "secondary" symptoms like treating the high BPs and intermittant monitoring of it too and of course the labs,stuff like that? there just really is not 'treatment" for the PKD itself unfortunetly. thisw particular type of kidney disease is just by far one of the most insane in how it continues on and does what it wants and how it wants with no real way to stop the cysts from popping up in some really strange places,in my particular form anyway.
when you stated that all liver tests came back 'normal"? did they ever actually do an ultrasound ON that liver just to see if the cystic development is even going on in there at all? this DOES matter, alot in just really being able to actually 'see' any organ/area that could have cysts. all my labs ,kidney and liver are still all within the midrange of normal which would indicate everything is just dandy in me. thats until you take one look at the massive amounts of cysts i have so far in both kidneys,liver one on my ovary,two inside my psoas muscle(runs along low back into groin area?)that show on my USs that IS the real picture there the inside look at the organs. labs just do not actually change with this type of kidney disease until the very real damage starts to impact actual organ functions. this is why many people, myself included, don';t have a freaking clue they even have this crap til a mere scan of an organ just shows the indications of the polycysts themselves being there.
there is one other possible here as far as getting that neph to try and help you? seeing about any indigent type of programs this or some other neph may have in place for people who simply do not actually have the luxery of health ins. right nowit is sooo freaking bad out there with so many peoplelosing jobs and the very crucial health ins too ya know? i would just think that considering how truely bad things are right now, that alot of specialists would have had to have come up with better, more creative ways of allowing patients to get proper care right now, ya know what i mean? even being able to pay on a sliding fee scale or something would be a huge help to you right now. there just has to be some very caring and compassionate nephs out there that are simply doing this right now. you may have to do some leg work here but it would be well worth it just to know that you do have that neph to help monitor you.
i really hope you can find some way to just be able to see a neph right now. i really don't see mine all that often since there really is not anything he can do for me? my primary just does my labs every six months and i have a yearly ultrasound,thats about it for me. i have not had any real reason to even see my neph in years actually. but i do call him if i have certain questions about stuff. please let me know how you are doing,K? hopefully things will work out somehow for you with this ins crap and finding a neph too. i really do wish i coulkd have been much more help right now to you. good luck hippie, Marcia
Unfortunately specialist will not take medicaide and if they do they already have their quota of patients.
Is there anybody who has had/has cola colored/dark red urine , I can't be the only one?
What was your diagnoses?