| Re: Metabolism Question
Kim,i am just curious here as to whether or not you have had the ultrasound done on your kidneys and liver as well to try and determine whther or not you,like members of your family,also have PKD?just how old are you?do the family members who have this also have liver involvement or strictly kidney?while my moms side,her cousins all just have strictly kidney affectation,it took on a whole new presentation with me and my sister,we both have liver involvement as well as the standard kidney crap.my son,while his kidneys are pretty good considering,he recieved a whole different mutation of this which caused him to start developing these nasty little fibers within his liver even before he was even born,which led to eventual liver failure at age 12,with Tx at 13.you just really do need to have your liver and kidneys completely checked out and evaluated for PKD.depending on your actual age will detrmine just what you see.things just get worse as we age.i was first told,after we actually found out we even had this in our family the day my son threw up blood at school,that we all needed to have the US done to see which side of the family it came from since we really had no freakin clue this was even in my moms side.my other son,who is four years older than the one who had the liver failure only had a cyst,one singular cyst in each kidney at that time,he was around 16-17 at that time.we were tld back then that if he did not actually show the 'polycysts' then that we could be pretty certain that he did not actually have this nasty disease.BUT since then,they now have moved that little "window" up to age 30.so depending on what is actually there after thirty would kind of indicate whther or not you actually have it or not.i am not telling my other son to actually have himself tested at this point as if he did actually have it,it wouldn't really change anything since there is absolutely no real treatment for it except to wait til kidney failure and obtain a new kidney.my neph told me the only thing that would come out really of finding out he had this would be to make it that much harder to obtain health ins if this were positively Dxed in him,which i had never actually thought of before.
as far as your labs go,just what are they right now,mostly your ALT,AST and the alkaline phos.?and your bili if you have it on hand?where they are right now is more important than where they once were.it is great that they went down but the fact they are still out of range at all just tells that you do have some actual damage going on.you need to find out the actual cause of it.and to find out if this is actually progressing or stable now too.whether or not meatabolization is really being affected would depend on just what part or parts of your liver are being affected the most.despite the fact my kidneys are over three times the normalsize and loaded inside and out with huge polyglobs of cysts,my functions are still(as of dec 8 or last year)within all normal ranges which just truely amazes me when i look at my ultrasound and my kidneys look like swiss cheese.it really is amazing at how things can keep going when all that damge hits.
when my son was actually Dxed age age 12 as only having about 20 percent of his overall liver functions left because of the extensive damage going on which led to the portal hypertension,he never really appeared to be sick.we of course were absolutely stunned with the Dx.it really IS amazing just how the body can compensate for a failing organ.the other abdominal organs will in some cases,actually take over some of the system function since some of them have the capabilitys of the liver but they are never needed.really freaky.
but you really DO need to find out about the PKD possibility since it is pretty obvious something is or has been affecting and also damageing liver cells.hopefully your labs will continue that downward trend.if that happens the chances that regeneration will pop the liver back to normal are good.i do wish you lots of luck with this and hope things will only get better from here.please let me know how things are going kim.if you have anymore questions,just holler.Marcia
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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.
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