hello, i had a my first visit with the KS today. he ran a urine test there in the office and again confirmed WHY i was there in the first place. I had high protein level and blood cells. My rhuemie had sent me there since i have fibromyalgia plus some form of arthritis. they also think i might have an autoimmune disease, but what theyre not exactly sure.
My rhuemie had run some tests, a 24 hour urine test that came back with a 396 protein level and blood cells in it, thats why he sent me to the K specialists.
The original report from the 24 hr urine test came back saying my kidneys were working at 60%, which my Kidney Spec. said wasnt all that great. He is repeating the test in two months and depending on those results (which he feels will show more of the same) , he will set me up for kidney biopsies.
Is 60% kidney function with elevated protien and blood cells dangerous? He didnt go into alot of what diseases could be wrong, tho since i have fibromaylgia plus and elevated sed rate( which doesnt happen with fibro), and im always anemic (probably due to the loss of red blood cells), he feels i have some sort or form of autoimmune disease. can someone please tell me, how serious a 60% kidney function level is?
My next appt with the KS is in two months, he wants to collect all the tests run by my fibromaylgia doc and the rheumie doc (who has run tons of test and blood work on me) so he can be more ready to give me a better diagnosis of whats going on. he did tell me he didnt want me worrying since most kidney dysfunctions can now be fixed with some med. I dont know if he was telling me this to make me worry less or if its the truth. I feel like im waiting for the other shoe to drop. any thoughts on this would greatly help my dark mood right now. usually im a bubbly happy person with a positive outlook, but this has me quite concerned for some reason. any words of encouragement would greatly GREATLY be appreciated.
i am wondering just why this doc went straight to doing a risky biopsy without doing any actual radiologic testing first,since in most cases,you can tell whats up with the kidneys without ever actually having to penetrate the kidney at all.my neph refuses to actually DO any invasive procedures on any kidney unless its absolutely positively needed since once you break that capsule in any way and enter the kidney itself,this has been known to start kind of a snowball effect of other possible kidney problems usually starting with infection.but you will probably be just fine.my neph is just very very cautious,he is also one of the top docs in the twin cites area where i live.really super guy too.i really trust his judgement as far as my relly great care he has given me over the years.but i digress.
i am wondering if there are any other family members on either side that have reported kidney problems at some point?polycystic kidney disease is just one of the many forms of actual kidney diseases out there that would show with your same initial symptoms.
i had the same protien and blood cell stuff at the initial Dx stage this was tested after i had been sent for the ultrasound to see if i or my husband had the PKD as our son had just been Dxed with it,and we were told that it had to have come from one of us.it is whats called an 'autosomal dominant" kidney disease.meaning that one parent has to have it in order to be able to pass it on to their children.
i think you are definitely doing the right thing as far as gathering up all your kidney records and passing them along to your other specailists.everyone always needs to be on the same page when you have any sort of multiple conditions and are also seeing many specailists as well.i too am in this same 'boat' with all of my ongoing crap caused by spinalcord injury.
i am wondering just what your neph was referring to with that statement about taking that pill and making it all better type thing?i am currently not taking any actual kidney related meds(at least not yet anyway,lol) tho I am on alot of other different meds to try and keep my other conditions under control.
has this doc actually referred you for ANY radiological testing,even an ultrasound??if not i would really ask him why not.you really do need to get a good look at the actual kidneys themselves in order to really "see' what they are looking like at this point.this would give you the best overall picture.
my labs are amazingly all still within the normal ranges but inbelievably my US films show a whole different story.they show two really "holey' looking kidneys that are just loaded with many many multiple and very large cysts.it still just amazes me that my labs have not "turned" yet.my biggest problem with them right now is just their sheer size and that they have shifted out of their normal spots and are currently in some really uncomfortable places.I would not have even had a clue as to what was going on with my kidneys if my son hadn't become deathly ill from liver failure associated with the PKD.my labs show something sooo very different than whats inside.
hopefully your neph will actually send you for at least an US or even a contrasted CT or MRI.just make sure to discuss the contrast with them as some types of contrast can cause huge kidney issues if taken my people with advanced kidney disease.there is a med that you can take that you start the day before any contrasted rad test called "mucomyst"? this actually binds with the contrast before they can do any actual damage to the kidneys and flushes it out of the kidneys.i have had to use this several times now over the past year due to repeated angiograms i have had to have done on my brain for an aneurysm that decided to just pop in my brain and was only Dxed this past nov.had it coiled and things so far are okay.but every test,my IRs nurse orders the muco and away we go.it just tastes like really heavy sulpher,kinda nasty but if it protects my precious kidneys,well..
please let me know how things are going and DO ask for at least an ultrasound.its a really quick, non invasive way of getting a good look at the kidneys.it will tell alot.good luck to you Jen,marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
hi marcia, thank you so much for responding. no hes going to wait on the biopsies, or rather will schedule it if this urine test (24) shows up again. Yes im also having an ultrasound done, it just hasnt been scheduled , they will call me today or tomorrow to do that, Im sorry, i should have mentioned that but in the mind set i was in yesterday i totally forgot. He's also running a whole lab work up on me, and waiting for all the other tests to come in and get a better picture of whats going on. but the other part about the "pill", oh yea, i guess i wanted to believe that part , and that i had nothing to worry about. i wasnt sure if i was getting the soft touch from him or the truth.
uh oh, now what i read about your neph says about once puncturing the kidney capsule, hmmm, im thinking id better do alot more research on it before allowing him to get into my kidneys. THANK YOU so much for having said that. you know when youre so sick for so long , almost all my 52 yrs (one thing or another and yea, i had HUGE tonsils at age1, they just couldnt operate at that age baaaak when we still traveled in covered wagons lol ) and are used to having doctors prod and ***** you, you sort of get into this do whatever you need to do stage, compliancy,and that is so very very bad. thanks for a wakeup call hon. will let you know how things go, and oh my gosh, im sooo very very sorry for all youre going thru hon, and all your pain.Please let me know how youre doing, and my prayers are with you hon.
Bob, thank you hon for a giving me another look at the same problem. Yes he did say he would more than likely end up doing a biopsy, more sooner than later (his words). its so confusing and frustrating at this moment. i feel like im on a 'waiting mode" to see what hes going to do.
I suffer from many different health problems, hypothyroid, fibromyalgia (bad), nueropathy, numbness in my ring finger and the bottom of my feet. High Sed rate which doesnt show up in fibro but does in arthritis and other autoimmune diseases. protein and blood in urine. total hysterectomy at age 26. then two years ago, had surgery for abdominal adhesions. I suffered with that bit from an oct thru a may when they finally decided to do a lapo to see what was going on inside, and discovered my insides had tons of doubled webbed adhesions that were twisted around the intestines by then. from that surgery i ended up with an infection at the lapo site that lasted close to two months. it was opened and drained and left open. i could go on and bore you to death but i'll spare you. the pain of fibro is so bad, and now THIS that seems to have just been dropped in my laps a few months ago. took two months to be able to get to see the neph because it was my first appt with him.
So i dont know much about kidney problems at ALL.
I thank you for taking the time to add the websites to the post bob. I will start researching them right now.
May i ask about the biopsy? im so afraid of extra pain on me that can set me up for a fibro flareup that im worried sick to my stomach. How painful is it, what does it feel like? do they put you to sleep or just semi sedated? how long did it take, and how soon were you back on your feet?
i think it gives me a bit of encouragement to hear you say that the diagnosis was totally different after the biopsy than before. i guess that is the best way to get in there to find out exactly what is wrong, no way around that.
Thank you bob, i appreciate it hon, and wish you a great day. oh and may i ask how you are doing NOW? did you receive meds?
hi bob,actually whether the biopsy is really actually necessary is the key here.i am not saying that having one is wrong,but if there are other ways to actually Dx a kidney problem,why put your kidney at this risk?thats all i am saying.in my case,as well as with other types of kidney diseases,a simple look at the kidneys with some sort of actual rad testing is all that is really needed to make an accurate Dx.in cases where the problem is more elusive and cannot be determined by just bloodwork and other rad testing its a wonderful tool.but it is just introducing something foriegn into the kidney which breaks that protective barrier,espescially in a hospital setting where stastically more and more people are actually leaving with some sort of an infection that they did not actually come in with,well,why risk that if you do not actually have to.thats all.
it should just realistically not be used as the first diagnostic when you can possible get all the diagnostic info with just taking a simple look at the kidneys with a non risky procedure like an ultrasound or MRI.
my polycysic disease was Dxed by simple ultrasound and I have never ever had a biopsy.some times they are needed but in many cases,just sending a patient for a few other types of tests first,well you may not actually even have to do one.i would much rather go the rad route instead of undergoing any procedure that I really don't have to have,ya know what I mean?and this goes for any medical condition,not just the kidneys.hospitals are just risky places to even be in sometimes.I do hope your kidneys are functioning well.good luck,marcia
marcia, i keep hearing more and more about the infections people are getting at HOSPITALS like you wrote. this is so scary, i just read another post about kidney stones and the woman also ended up with a very bad urinary infection that ended her back again in the hospital.
i know i had surgery two years ago, for abdominal adhesions that i had suffered with for a very long time. i was sent home two days later and on the 3rd day after the surgery, i noticed the incision starting to turn RED and HOT. i thought maybe i had just overdone it for that day moving and walking around. by the 4th day i was in so much pain and the incision was alot redder and i was running a fever. had to go in to the docs office and he had to cut into it then and there to drain it. he said i must have picked up the infection IN THE HOSPITAL. for the next six weeks ihad to have a nurse come over and take all the stuff they stuffed into it out and clean it and repack it. so yea, i can totally understand, that hospitals, dont guarantee a healthy outcome. that is what is so scary when having to decide what to do, , im having an ultrasound done, and more tests, so will keep you updated. thank you both for responding,