ASDGRMama
01-14-2006, 01:32 AM
My cousin's husband has been on dialysis for 2 months (he has IgA Nephropathy) and his creatinine levels are getting higher...his liver enzymes are also off (he's very very yellow).
Why would his levels rise on dialysis? Is this common? Does it signify anything?
Thank you for any help you can offer!
Kelly
Why would his levels rise on dialysis? Is this common? Does it signify anything?
Thank you for any help you can offer!
Kelly
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feelbad
01-14-2006, 10:21 AM
He obviously has some sort of a liver disease along with his kidney disease.there are many kidney diseases that also affect the liver and also when one body system starts to fail,the others will end up taking over some of the work and end up becomming damaged that way as well.What IS his actual diagnosis.the only kidney/liver disease that I am very very familiar with is polycystic kidney disease.I have it as well as my son.my sons liver failed when he was only 12,and we did not even know he had this(no one in our family even knew this disease was even IN our family and that three of us actually had it,my sister and me and my son).is this man on the list for a kidney or liver transplant yet?if not,he needs to be as things are not really sounding good for him at all.the creatinine is going way out of range desptite the dialysis.i don't know the exact clinical reason for this but just from what I know of liver and kidney disease,things are sounding a bit ominous for this man.his kidneys are going to completely shut down as this creatinine level rises.Just how badly is his liver being affected?his bilirubin is quite obviously way out of range if you are actually seeing jaundice.have they told him just how much actual function he actually has left in his kidneys and his liver?when we first found out that my son was even sick,he first presented with vomiting up blood at school one day and after that and tons of testing and procedures we found out that he was already down to only having about 20% of his actual liver function left.it was indeed shocking to say the least.If your cousin is not already doing this,she needs to be asking alot of questions and also obtaining any and all copies of his labworsk and other test reports and also any docs clinic notes?Obtaining all of his medical records from every place he has ever been seen for this condition is very very important right now.these really come in handy if he should need to go to the ER,keeping these records in some sort of an expanding file will save you lots of time and trouble as you will already have the last set of labs and this gives the docs a baseline to work from.they will know whether something has gotten much worse or better when they can compare the last labs to the ones that they will do when he is in the ER.always have her carry this folder to every appt and every doc visit.but being able to read all of the docs notes(the ones they make after every appt with you?)really really helps you in knowing just what the doc is thinking about his overall medical conditions.it just gives a much clearer picture of what is going on.sorry I couldn't really help you with your actual question but he is not doing well at all and definitely needs a kidney transplant probably sooner than later.Please keep me posted on how things are going,K? good luck, Marcia
ASDGRMama
01-14-2006, 01:30 PM
He is on a list for kidney transplant but he's somewhere around #15,000 on the list. His mother is willing to be tested to see if she can donate.
He is only 34 (and the father of 6 children ages 15 years to 14 months). They feel he developed this condition (IgA Nephropathy) when he was a child due to an untreated strep infection but they really don't know for certain. He was diagnosed in November 2000 and was told that it'd be 20-25 years before he had to think about dialysis because it was a very slow-progressing disease. In November 2005 he was hospitalized and started dialysis while in the hospital. His numbers now are actually higher than they were when he was admitted.
He goes to dialysis 3 times per week for four hours each time but because of the elevated creatinine they're going to do it for an extra half an hour and see if it helps.
My cousin has copies of his labwork but she doesn't understand it very well and the dr isn't very good at giving information even when they do ask questions. I really feel he's not getting adequate care but they can't afford to go anywhere else.
I'm not sure what his kidney function is at this point but I can find out easily enough.
Thank you so much for your help! I'm so sorry to hear about you, your son and your sister! I can't imagine... how are all of you doing at this point?
Kelly
He is only 34 (and the father of 6 children ages 15 years to 14 months). They feel he developed this condition (IgA Nephropathy) when he was a child due to an untreated strep infection but they really don't know for certain. He was diagnosed in November 2000 and was told that it'd be 20-25 years before he had to think about dialysis because it was a very slow-progressing disease. In November 2005 he was hospitalized and started dialysis while in the hospital. His numbers now are actually higher than they were when he was admitted.
He goes to dialysis 3 times per week for four hours each time but because of the elevated creatinine they're going to do it for an extra half an hour and see if it helps.
My cousin has copies of his labwork but she doesn't understand it very well and the dr isn't very good at giving information even when they do ask questions. I really feel he's not getting adequate care but they can't afford to go anywhere else.
I'm not sure what his kidney function is at this point but I can find out easily enough.
Thank you so much for your help! I'm so sorry to hear about you, your son and your sister! I can't imagine... how are all of you doing at this point?
Kelly
Coravh
01-14-2006, 02:16 PM
You don't go on dialysis just because of a creatinine number. There are many reasons including issues with potassium and issues with water retention. It is possible that his remaining kidney function was still clearing some creatinine but that his potassium was dangerously high. Try not to take the creatinine number too seriously. It is a broad indicator, but at this point it doesn't really mean that much. Creatinine will also be higher because of higher muscle mass or more exercise.
The most important issue is how is he feeling. It is also important to try to find a donor, the less time he spends on dialysis, the better.
Good luck to both of you and keep us posted.
Cora
1 yr on dialysis and 3.5 years post transplant.
The most important issue is how is he feeling. It is also important to try to find a donor, the less time he spends on dialysis, the better.
Good luck to both of you and keep us posted.
Cora
1 yr on dialysis and 3.5 years post transplant.
ASDGRMama
01-15-2006, 12:13 AM
He began dialysis because his creatinine levels were 6.3, his potassium was severely elevated, he was retaining fluid, had high BP, urinating blood (urine was like cola) and "ureatic poisoning".
Currently his creatinine levels are 6.8 and his kidney function is below 10%. His dr puts a great deal of weight on the creatinine numbers so that's why my cousin is so concerned.
He is not exercising at all. He's unable to do much of anything but sleep at this point. He's not a large person...average sized.
His blood pressure is also still elevated but his potassium levels have come down (although not in range yet).
He's feeling mostly very very tired. He also has no libido whatsoever and is having trouble maintaining an erection (sorry if that's TMI!!) but they're both very very troubled about that (he has blood in his sperm also...prostate exam was normal...they may do an ultrasound). Is that common for men with kidney disease? Maybe I'll post it as a seperate topic...
Thank you for the info. I think they're having trouble deciding about the transplant because the dialysis nurse tells them that many people are on dialysis for 10-15 years without any trouble. Since some of their children are so young they wanted to wait until the youngest was older so that she'd handle them being away better (the transplant would be done at a hospital 4 hours away and they would be there for at least two weeks according to the dr).
I'm sure I'll be back with more questions :) .
Kelly
Currently his creatinine levels are 6.8 and his kidney function is below 10%. His dr puts a great deal of weight on the creatinine numbers so that's why my cousin is so concerned.
He is not exercising at all. He's unable to do much of anything but sleep at this point. He's not a large person...average sized.
His blood pressure is also still elevated but his potassium levels have come down (although not in range yet).
He's feeling mostly very very tired. He also has no libido whatsoever and is having trouble maintaining an erection (sorry if that's TMI!!) but they're both very very troubled about that (he has blood in his sperm also...prostate exam was normal...they may do an ultrasound). Is that common for men with kidney disease? Maybe I'll post it as a seperate topic...
Thank you for the info. I think they're having trouble deciding about the transplant because the dialysis nurse tells them that many people are on dialysis for 10-15 years without any trouble. Since some of their children are so young they wanted to wait until the youngest was older so that she'd handle them being away better (the transplant would be done at a hospital 4 hours away and they would be there for at least two weeks according to the dr).
I'm sure I'll be back with more questions :) .
Kelly
feelbad
01-16-2006, 11:04 AM
So just what have they been actually told about the liver then??This is obviously a rather serious issue too.he may also be needing a new liver depending on the extent of the actual damage.this all depends on just what IS the real cause of the high enzymes and the jaundice.by the way,when persons bilirubin level(liver) gets too high they will pee the color of cola too.my sons looked just horrible there for awhile.they need much more specific info on just what is really causing the liver problems and find out the extent of the damage.Some of this could just be the liver doing too much because of the kidneys not clearing all of the toxins.Keep us posted.Marcia
ASDGRMama
01-16-2006, 01:10 PM
I wanted to add that his phosphorus is elevated at 7.3 and not coming down with meds and dialysis. His potassium levels are 4.7.
The dr hasn't been very clear about his liver enzymes. He doesn't know why they're elevated and I'm not sure if they've investigated that area further. I'll have my cousin call the dr and ask.
Thanks for the help!
Kelly
The dr hasn't been very clear about his liver enzymes. He doesn't know why they're elevated and I'm not sure if they've investigated that area further. I'll have my cousin call the dr and ask.
Thanks for the help!
Kelly
Coravh
01-20-2006, 01:27 PM
He will feel better once he has been on dialysis for a while and his proper prescription is found. While there are issues with the side effects from transplant drugs, large numbers of studies have shown that a transplant will more than double the life expectancy of the patient. I know I felt soooooooo much better after my transplant. One of the things that a dialysis nurse will not mention (mostly because they want you to feel better about the whole thing) is that dialysis is sort of like dog years. One year on dialysis is about the equivalent of living 4 years. Keep thinking about the transplant.
Good luck.
Cora
Good luck.
Cora
feelbad
01-21-2006, 11:11 AM
Yes you definitely need to find out the exact reason/cause of the liver issues.If this doc does not seem to know or does not really seem to care,see a good GI doc for a full evaluation and liver work up.he really needs to know just what he is looking at here with regard to how his liver is doing.while this 'could' all be stemming from the kidney issues,it needs to be evaluated.keep us posted and Good luck,Marcia