Re: Cola colored dark red urine
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