New to forum, needing some answers

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questforanswers
New Member


Date Joined Sep 2012
Total Posts : 8
   Posted 9/23/2012 4:03 AM (GMT -6)   
Hi, I am needing some help with questions I have about my dads health. He has a number of health issues. He has Myloid Lukemia and prostate cancer which has gone on to the bladder wall.
His main issue is now kidney failure due to the damaging of his kidneys which was caused by his prostate cancer.
His creatinine levels are high and I have been trying to find out exactly how high they are and how high they get before it become lethal but I have not been able to find the info that I need.
We have been told that his levels are at 793 and that it is very high and in the very dangerous catagory. My problem is that when I go to research it further the levels talked about range from 0.5 - 10 and I am not sure where my dad fits on that scale.
Can anyone help me understand this a bit more? I really am struggling with it.
Thanks

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 9/24/2012 8:18 AM (GMT -6)   
 
The reason you are having problems finding information is because the lab you are using is using umol/L measurments instead of mg/dl. The mg/dl  is commonly used in the US so I don't know if you are in another country or maybe your dad is in another country. The link posted above is a measurment converter. I put your dads number of 793 in the calculater and it came back 8.9 (Normal levels in mg/dl are .5-1.2 for men)

This is a very high creatinine. When I started dialysis last year, my creatinine was at 6.1 and then quickly went up after starting. I know have a creatinine of 13 all the time. (I have chosen to do peritoneal dialysis at home) But it really depends on how symptamatic your dad is showing. When I started I was becoming very confused, vomiting, nausea, couldnt keep my pills down, fatigued, and dizzy.

Is your dad considering dialysis? It reallly isnt as bad as people think but it is life changing. I would be more than happy to answer any questions you have based on my experiences, if you have any!!!
Amy
Lupus Moderater


dialysis from lupus nephritis

questforanswers
New Member


Date Joined Sep 2012
Total Posts : 8
   Posted 9/25/2012 3:04 PM (GMT -6)   
Thankyou so much for that link, it really helps.

I have been finding it really hard to get answers from people because when I tell them that dads levels are so high and that dialysis isn't going to happen they shut down and don't want to talk about it. I can understand that they don't want to have to put a time limit of life on my dads head but I still need answers to be able to keep control of my mind.

Dad is not doing dialysis which I can understand. He has been sick with cancer for a very long time and he is not going to beat it it is too far progressed. He has had so many procedures and has so many pills and crap to take and he is now just sitting around waiting for that moment when he gets to pass on from the pain that is his life. His last procedure was done a few weeks ago in an effort to reduce his levels. They put a tube through his back into his one functioning kidney to drain the urine from it into a bag which gets strapped to his leg. He decided then that there would be no more interventions and that from then on he would take his pills and use his pain patches and leave it up to nature to do its thing. I don't blame him really because his other death alternative is a very painful death by prostate cancer. He would not be buying much time with dialysis at all.

He apparently has still got a good potassium level which the doctor is happy with but his creatinine levels are shooting up -last checked they had risen by over 100 in 5 days . He is very tired and has 3 two hour naps during the day and now because of the bag sleeps all night. He has started being itchy and gets shakey sometimes but has not started feeling confused yet, I think. He is eating lots atm, he went from no appetite to eating lots but he has been losing his breakfast and fighting nausea for years thanks to his lukemia meds so I am unsure wether or he would notice any difference if there was a change.

As far as we have been told he could shut down at any time from now on from either toxic shock or his heart stopping. I just hope that however it happens it is fast.

Thankyou again for answering my question when so many others would or could not do it. Best of luck to you in your journey with kidney disease. :)

questforanswers
New Member


Date Joined Sep 2012
Total Posts : 8
   Posted 9/25/2012 3:20 PM (GMT -6)   
Just a question for you if you don't mind answering it. How are you able to sustain a level of 13 and still be functioning? Is this because you are doing dialysis? Are people able to live at this level without dialysis at all? I don't have enough knowledge to understand it fully. I know that it is not all about the creatinine levels but don't understand the other components.
Thanks

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 9/26/2012 6:15 AM (GMT -6)   
Yes, there are 2 types of dialysis...one is hemodialysis (through blood) and one is Peritoneal diaysis commonly done at home (through the stomach) ON hemodilaysis after treatment your creatinine goes down. But on peritoneal dialysis(which I am on) it never goes back to a normal level. It actually continues to rise over the years. People tend to stop urinating and there for they basically are living off a machine until they are able to get a transplant. I am on the machine 15-17 hours a day getting the toxins pulled off but the good thing I don't have to be "connected" to the machine for but 30-60 minutes in the afternoon and then I am connected the rest of the time during the nighttime hours/morning hours. So I end up sleeping most of the time I am connected or watching tv. and generally people do not live at 13. Some people can live with 6-7 for a bit but it will eventually catch up with them. It depends on when potassium starts rising (which can cause heart to stop) sodium levels go up causing fluid retention and possible fluid around heart/lungs. The itchy is probably due to phoshporus levels rising. If he wants the itching to stop, ask the doc about his phoshporus levels and see if they will put him on a phosphate binder. Should help the itching.
Amy
Lupus Moderater


dialysis from lupus nephritis

questforanswers
New Member


Date Joined Sep 2012
Total Posts : 8
   Posted 9/26/2012 6:52 PM (GMT -6)   
Thankyou so much for your time :)
I really appreciate being able to ask questions without people telling me that I don't need to know the answers.
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