kim3101
05-24-2007, 04:13 PM
I hope this message finds you somewhat comfortable today.
I posted an earlier thread looking for some advise on elvated liver enzymes and although this is along those same lines, it's a tad different (thus the new thread).
Anyway, as you may have read, I have been found to have elevated liver enzymes. Root cause still undeterminable.
As last count, my ALT was at 125. not too horrible high but at one point it was in the 700's.
My question is, elevated liver enzymes tells us the iver is not functioning at 100%. If your liver is not functioning that well, what happens to the metabolism of meds that metabolize in the liver? Can that decrease or increase the effectiveness of whatever meds you are on? I ask because right around the time this all started, my pain levels increased. Now I don't know if it's just a tolerance issue, increase in pain, or what.
It would sure be nice to know if I could blame the increse of pain to this liver situation. At least then I would know there is light at the end of the tunnel.
Take care everyone and thanks for the support. I don't post that much but just coming to hear to read the daily posts is theraputic in a way.
I posted an earlier thread looking for some advise on elvated liver enzymes and although this is along those same lines, it's a tad different (thus the new thread).
Anyway, as you may have read, I have been found to have elevated liver enzymes. Root cause still undeterminable.
As last count, my ALT was at 125. not too horrible high but at one point it was in the 700's.
My question is, elevated liver enzymes tells us the iver is not functioning at 100%. If your liver is not functioning that well, what happens to the metabolism of meds that metabolize in the liver? Can that decrease or increase the effectiveness of whatever meds you are on? I ask because right around the time this all started, my pain levels increased. Now I don't know if it's just a tolerance issue, increase in pain, or what.
It would sure be nice to know if I could blame the increse of pain to this liver situation. At least then I would know there is light at the end of the tunnel.
Take care everyone and thanks for the support. I don't post that much but just coming to hear to read the daily posts is theraputic in a way.
Sponsor
feelbad
05-24-2007, 09:07 PM
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
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
onyxgates
05-24-2007, 09:30 PM
Feelbad: Please check out the Brain thread for an update
Sorry to be hijacking this thread. Kim, I wish you the best.
Sorry to be hijacking this thread. Kim, I wish you the best.
feelbad
05-25-2007, 11:45 AM
I'm getting there onyx,really.been having severe "hand' issues here and can only spend sporatic time on the PC for about the last week,but i WILL get there i promise.I read it but just haven't been able to reply yet.i will.marcia
kim3101
05-25-2007, 03:02 PM
Marcia,
I have had my kidneys checked yearly for PKD, and now at the age of 37, there are still no signs of it. The only anomaly on the kidneys is the thinning of the lining (still can't recall the clinical name for this but I'll find it and post). I had a rather thorough work up when I was being tested as a live donor for my mom. They checked my liver too as my mom's PKD is also on her liver. She has not had any compliations with her liver - surprisingly. Her kidneys were horrible. They actually removed them before the transplant because she was getting way too many infections. The doctors took a picture of them and OMG - they were huge and black and covered with the cysts. They looked more like rotten grapes - HUGE grapes. Kinda the opposite of swiss chesse but I know where you were going with that.
My last blood draw had my ALT at 125...I don't know the other numbers as I have not actually seen the report myself. The report right before that had my AST at 29 and mt ALT at 101. Nothing else was checked with this sample. My doctor typically gives me a copy of all my tests every time I see her. I will get the last report and post it here.
You have a very interesting thought on a PKD mutation. While I was in the hospital they did an US and the only remarks were the fatty liver characteristics. I have gained quite a bit of weight since starting the methadone AND working from home. Those two combined, it's hard to tell which is really the real cause. I would lead towards working from home as I am no where near as active as I was when I was working in a building.
Anyway, I came across my US report from the hospital. It reads:
"Images of the liver demonstrate diffuse increase in echogenicity and coarseing of heptic echotexture suggesting fatty or fibrous infiltration. This somewhat limits evaluation for focal abnormaility, although none is identified. There is no evidence of intrahepatic bile ductal dilatation.
Impression
The liver demonstrates increased echogenicity suggesting fatty or fibrous infiltration. There is prominence of the common bile duct without evidence of focal obstruction or filling defect. This is most likely related to history of prior cholecystyectomy. Spleen is upper limit of normal size measuring approximately 14.5 cm in length"
While in the hospital, my blood tests had the following:
Glucose 105 (H) - I was however on an IV for dyhydration
BUN 8 (low)
Creatinine 0.6 (low)
chloride 109 high
ast 283 high - next draw it was down to 279
alt 679 high - next draw it was 759
calcium 8.5 low
bilirubin total 0.6 good
alkaline phosphatase 137 good
red blood count 3.92 low - white 5.4 good
hemoglobin 11.8 low
everything else was normal......
Yes, I know these were from a while ago but right now, it's the only data I have.
I am making an appt with my PCP and will talk to her about repeating the tests and finding the root cause. I can't keep going on wondering if my meds are killing me or not! And if there's something wrong - we need to find out now, in the early stages.
Thanks for listening Marcia. It sure helps to at least "talk" to someone that understands
Take care!
Kim
I have had my kidneys checked yearly for PKD, and now at the age of 37, there are still no signs of it. The only anomaly on the kidneys is the thinning of the lining (still can't recall the clinical name for this but I'll find it and post). I had a rather thorough work up when I was being tested as a live donor for my mom. They checked my liver too as my mom's PKD is also on her liver. She has not had any compliations with her liver - surprisingly. Her kidneys were horrible. They actually removed them before the transplant because she was getting way too many infections. The doctors took a picture of them and OMG - they were huge and black and covered with the cysts. They looked more like rotten grapes - HUGE grapes. Kinda the opposite of swiss chesse but I know where you were going with that.
My last blood draw had my ALT at 125...I don't know the other numbers as I have not actually seen the report myself. The report right before that had my AST at 29 and mt ALT at 101. Nothing else was checked with this sample. My doctor typically gives me a copy of all my tests every time I see her. I will get the last report and post it here.
You have a very interesting thought on a PKD mutation. While I was in the hospital they did an US and the only remarks were the fatty liver characteristics. I have gained quite a bit of weight since starting the methadone AND working from home. Those two combined, it's hard to tell which is really the real cause. I would lead towards working from home as I am no where near as active as I was when I was working in a building.
Anyway, I came across my US report from the hospital. It reads:
"Images of the liver demonstrate diffuse increase in echogenicity and coarseing of heptic echotexture suggesting fatty or fibrous infiltration. This somewhat limits evaluation for focal abnormaility, although none is identified. There is no evidence of intrahepatic bile ductal dilatation.
Impression
The liver demonstrates increased echogenicity suggesting fatty or fibrous infiltration. There is prominence of the common bile duct without evidence of focal obstruction or filling defect. This is most likely related to history of prior cholecystyectomy. Spleen is upper limit of normal size measuring approximately 14.5 cm in length"
While in the hospital, my blood tests had the following:
Glucose 105 (H) - I was however on an IV for dyhydration
BUN 8 (low)
Creatinine 0.6 (low)
chloride 109 high
ast 283 high - next draw it was down to 279
alt 679 high - next draw it was 759
calcium 8.5 low
bilirubin total 0.6 good
alkaline phosphatase 137 good
red blood count 3.92 low - white 5.4 good
hemoglobin 11.8 low
everything else was normal......
Yes, I know these were from a while ago but right now, it's the only data I have.
I am making an appt with my PCP and will talk to her about repeating the tests and finding the root cause. I can't keep going on wondering if my meds are killing me or not! And if there's something wrong - we need to find out now, in the early stages.
Thanks for listening Marcia. It sure helps to at least "talk" to someone that understands
Take care!
Kim
feelbad
05-26-2007, 12:30 PM
No problem kim.i am just wondering about the possible 'fiberous" growth you have?there are little 'offshoots' or mutations of this stupid kidney disease that seem to produce or mutate thru various generations.what my son was actually born with but we had no clue was called "congenital hepatic fibrosis".like i said,he was born with this so this would not actually be what is going on with you,BUT on the other hand,you could have recieved some sort of a mutated version of this in some way.the one thing about these little mutations is they ALL stem from having the PKD gene in you in some form.the really strange thing in 'our' mutation of this is my mother just does NOT appear to actually have the polycysts in her kidneys or liver at all,none.but in order for me ,my sister and my son to have gotten what we now have,according to all the literature and what my neph told me,for all intents and purposes,she just HAS to actually have it in order to even be able to actually pass it on.it just goes totally against the autosomal dominant nature of the PKD.my father most definitely didn't have this,it had to come from our mother.it just doesn't make any sense or medical sense at all.
if i were you,first,obtain all and any actual medical info that has been generated on you from this issue and keep it all together in a folder or something so you just have it all in your possession.believe me, it makes alot of things just so much easier.
next,try doing some research on "hepatic fibrosis" and see what pops up.i am willing to bet that you actually have some mutated version of that PKD gene but it is just so screwed up(mutated) that this is how it chose to actually present in you individually.it is just soo freaky in what this disease can do in people.nothing would actually suprise me anymore after seeing what in gods name my son had to go thru and the fact my mom just does not appear to actually even have this in her.just plain wierd.really flippin wierd.just see what you can find out with the fibrosis thing and let me know what you find out,K?this would definitely be an offshoot of the PKD gene if this really is some level of hepatic fibrosis.there are varying levels of this.you definitely do not have what my son did or your liver would have started to fail around the age of ten.that is the average but my son presented with this hell around age twelve instead.amazes me really.let me know how things are going,K?take care kim,marcia
if i were you,first,obtain all and any actual medical info that has been generated on you from this issue and keep it all together in a folder or something so you just have it all in your possession.believe me, it makes alot of things just so much easier.
next,try doing some research on "hepatic fibrosis" and see what pops up.i am willing to bet that you actually have some mutated version of that PKD gene but it is just so screwed up(mutated) that this is how it chose to actually present in you individually.it is just soo freaky in what this disease can do in people.nothing would actually suprise me anymore after seeing what in gods name my son had to go thru and the fact my mom just does not appear to actually even have this in her.just plain wierd.really flippin wierd.just see what you can find out with the fibrosis thing and let me know what you find out,K?this would definitely be an offshoot of the PKD gene if this really is some level of hepatic fibrosis.there are varying levels of this.you definitely do not have what my son did or your liver would have started to fail around the age of ten.that is the average but my son presented with this hell around age twelve instead.amazes me really.let me know how things are going,K?take care kim,marcia