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Old 10-15-2010, 11:31 AM   #4
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Re: 12 year old daughter with High Blood Pressure and protein in her urine

sorry it took me so long to get back here. dealing with my own stuff then a new family emergency. it never stops ya know?

i was confusing the cholestorals here so not to worry i do believe her good is what is up here and not the bad actually? so lets concentrate on the kidneys and the BPs.

unfortuently having protien in anyones usine 'usually' does mean that things are a bit 'off' in the kidney dept(something NEEDS diagnosing there). the only other reason a person would have even a trace of protien in urine from what i recall would be extreme excercise, overexersion type of situation where it could possibley 'leak' into the urine? but unfortuently, usually it IS a kidney issue. esp given her way above the norm BPs, esp for her age? they just are pretty high. those are the things that simply NEED better defining right now too? i am just wondering the "whys" in sending her to the cardio? what reasons did he actually give for THAT referral? i would really be intersted to actually knowthnat one.

luckily my son as far as the liver goes, he just celebrated a full ten years with that in june and it has been wonderful actually.the bigger problem with his kidneys besides just having the very same polycystic kidney disease i have too, is the absolutely horrid impact the anit rejection meds simply have on ones kidnyes at all? they ARE pretty impactful, but when the trade off for having to be on these would have been death, the trade off does not seemn like a huge thing ya know what i mean? i too will be needing my own tx here too much sooner probably than him since PKD, as you get older, that is when the overall kidney functions really start to decline(i personally had my first ever actual changes in my kidney labs this past year. i am now 49)? but with my liver also being full of the same types of globby huge cysts which simply push healthy tissue out of the way in the organs, and create huge kidneys/livers too really are also starting to become impacted too now. both inner and outter compression and pressure really IS your bigger enemy with what our inherited disease just is. but hopefully things wont get too bad really soon.

i personally think her doc realistically should be referring her to the neph FIRST before that cardio ped doc actually? i just am having trouble trying to really figure out the 'whys' in the cardio in the first place considering what your daughter has exhibited is more in relation to a possile kidney issue which would also include the higher BPs as well like i mentioned in the other post, and of course, that protein even being there at all? i just really DO think, given what i KNOW already the types of testing the neph would more than likely just do for her that answers would come much more quickily thru that neph than any cardio doc, ya know what i mean?

hopefully she can get in to see that neph very soon, i just really do feel that the real answers for 'her' current situation would come more quickly and be explained more readily by the neph and the types of testing he would do for her vs the cardio? if ypu can tell me exactly 'why' her ped thinks she needs the cardio here it would help in me getting a better understanding? while it is good that he is being thorough, i just think you will know much more seeing that neph than cardio here. but thats just my own opinion and i am NOT a doc. just a mom of a child with kidney disease and having my own kidney and liver issues too.

but please DO let me know what you find out hon. and make CERTAIN to obtain any copies of any labs or other testing results too. good luck,marcia
3-22-01,herniated C-6-7
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.