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Author Topic: Very High Creatinine on CAPD  (Read 8960 times)
Lexxtech18
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« on: March 09, 2013, 11:51:28 AM »

I started PD about a month ago and things are going pretty well so far. :) I'm on the cycler, have been for about a week now and my UFs are pretty good, though they have been progressively dropping the last couple days. But my PD RN says not to worry, it's probably just not picking up that there's still fluid left and then going onto the next cycle. I've been getting good manual drains through the day, just this morning I had 2000 in and drained out 3100!

I guess the biggest problem is that my creatinine doesn't seem to be clearing. I had my labs done 2 days ago and it was at 17.9! O.O Did a bunch of manuals and my cycler and had them rechecked again today, creat was still 17.9  :banghead; PD nurse is worried because I'm losing a lot of protein, too. My drains are really foamy. Does anyone know how long it takes for your creatinine to start clearing when you're on PD? I'm assuming at a much slower rate than hemo, obvs.
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Diagnosed with Bilateral Hypoplastic Kidney Disease - 1990
First Livinig Donor Transplant (from my mommy!) - October 3, 1996
Transplant Failed/Put on Hemodialysis - May 2005
Second Kidney Transplant (deceased donor) - July 2010
Transplant Failed/Restart In-Center Hemodialysis - February 2011
amanda100wilson
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« Reply #1 on: March 09, 2013, 01:48:25 PM »

mine was always high, even when PD is working well.  creatinine has no relevance to your health, as it has a low toxicity level.   the omly reason that it is even measured because it is usec as a marker to determine how well kidneys are clearing toxins.  not sure of he signigicance of high levels in ESRD, but it is the metabolite of muscle so  maybe it is higher in those who are very active, and/or have big muscle mass.
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
MaryD
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« Reply #2 on: March 09, 2013, 02:31:31 PM »

Agree with Amanda.  Creatinine is only useful as a marker measure on how far your kidneys are failing.  Once your on dialysis it is not an important measure.  When I was being looked after by the general staff from Hospital in the Home, they were always terribly concerned by my creatinine levels and didn't know to take notice of the potassium and phosphorous levels.  They thought I was spinning them a yarn until they ran the results past the kidney staff.

You do lose a lot of protein on PD.  You'll have to stuff yourself with protein till your sick of it.  It also will take weeks of stuffing yourself before you get a decent albumin level, then you can level off a little.  I spent also two months working on it till it showed up as an adequate level.

One of the advantages of PD is that it is clearing your toxins continuously, whereas HD it only working for you when you're hooked up.

Keep at it!
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Lexxtech18
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« Reply #3 on: March 09, 2013, 04:27:25 PM »

Thanks for the replies! That is what I thought about the creatinine, too. I was in the ER the other night for a fever/chills, etc (no peritonitis. yay!) and the first thing the doctor said was, "I'm concerned because your creatinine is really high." And I go, "Uhh yeah. I'm a dialysis patient." lol Which he already knew, but anyway, thought it was kind of funny. Hospitalists are so silly sometimes.  ::) But then my PD nurse called and said the same thing and I thought she would know better so if it's something she's concerned about maybe I should be concerned as well.
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Diagnosed with Bilateral Hypoplastic Kidney Disease - 1990
First Livinig Donor Transplant (from my mommy!) - October 3, 1996
Transplant Failed/Put on Hemodialysis - May 2005
Second Kidney Transplant (deceased donor) - July 2010
Transplant Failed/Restart In-Center Hemodialysis - February 2011
MaryD
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« Reply #4 on: March 09, 2013, 05:14:07 PM »

My creatinine has stayed the same since I started PD (350 Australian)  I did have awful trouble getting my albumin levels up though now they seem to stay up by themselves - less stuffing with protein.

Hang in there!
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Henry P Snicklesnorter
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« Reply #5 on: March 09, 2013, 06:14:43 PM »

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« Last Edit: October 21, 2013, 07:01:38 AM by Henry P Snicklesnorter » Logged
jbeany
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« Reply #6 on: March 09, 2013, 06:24:08 PM »

I always thought the deal was that it wasn't important that dialysis didn't return it to a "healthy" normal (what a level would be without kidney failure) - but that doesn't mean the number isn't relevant as a treatment indicator.  Maybe that's where we keep getting the "it's not important" thought from.
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Lexxtech18
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« Reply #7 on: March 09, 2013, 07:13:26 PM »

When they would do my post hemo creatinines it would always be at around 3, showing I was getting excellent clearance with hemo. But not with PD, my creat is up to 17.... I'm wondering if the PD is just not working for me or if it will just take time for my body to adjust and start clearing the creatinine better? I feel no ill effects besides being a little thirstier than normal.
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Diagnosed with Bilateral Hypoplastic Kidney Disease - 1990
First Livinig Donor Transplant (from my mommy!) - October 3, 1996
Transplant Failed/Put on Hemodialysis - May 2005
Second Kidney Transplant (deceased donor) - July 2010
Transplant Failed/Restart In-Center Hemodialysis - February 2011
amanda100wilson
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« Reply #8 on: March 09, 2013, 08:21:10 PM »

Henry, I was on PD for eight years.  It was only the last four that it stopped worjking once I lost my residual renal function.  More importantly, I felt fine and all my other patameters were great.  however, my creatinine was always really high.  I had an excellent neph. who was not concerned about it, and none of the others after him were either.  I am not a great believer in kt/v being a good measure of dialysis adequacy but that used to be great too as well.  even now on home HD, my level is not that low.
   



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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
Henry P Snicklesnorter
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« Reply #9 on: March 09, 2013, 09:58:46 PM »

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« Last Edit: October 21, 2013, 06:59:06 AM by Henry P Snicklesnorter » Logged
Willis
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« Reply #10 on: March 10, 2013, 08:03:39 AM »

My creatinine levels are pretty high since I've been on CCPD . Maybe somewhere in the 12-18 range. My neph has said that creatinine levels are not an important measure as long as the level is stable. Recently my creatinine level went up over 21 and the neph then got interested in it. She says an increase like that could mean that I'm not getting adequate dialysis and may need to increase the throughput volume while I'm on the cycler.

 
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amanda100wilson
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« Reply #11 on: March 10, 2013, 08:08:22 AM »

Henry, I do agree with you on that one but for me my PTH increased over time which meant more difficulty controlling my phosphorous.  however, I have recently had a parathyroidectomy and I was told that With the exception of one gland they were only slightly enlarged.  However,the fourth weighed 4 grams (usually a normal one weighs a few milligrams.  It turns out that I had a large primary adenoma on that gland that had nothing to do with ESRD (a healthy person can get them),  so who knows what was related to whatt, and it would certainly accou t for my declining PTH and phosphorous status.   However, it is not the creatinne level per se. that is the problem, which I think from reading these forums over the years, that many people think it is.
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
Lexxtech18
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« Reply #12 on: March 23, 2013, 11:38:28 AM »

My creatinine is still sitting at around 18. Neph is still concerned. Not sure what the future holds for me on PD. I'm doing everything right but my legs still seem to swell through the day and it's very troublesome with work. I'm getting about 1,000-1,200 UF off each night and doing and exchange during the day before work, which usually takes another 500 off. I feel okay, just the swelling is bothersome. I've used a few 4.25 solutions but it's still only taking about 700 extra.  :banghead;
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Diagnosed with Bilateral Hypoplastic Kidney Disease - 1990
First Livinig Donor Transplant (from my mommy!) - October 3, 1996
Transplant Failed/Put on Hemodialysis - May 2005
Second Kidney Transplant (deceased donor) - July 2010
Transplant Failed/Restart In-Center Hemodialysis - February 2011
mike22
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« Reply #13 on: March 23, 2013, 12:29:21 PM »

This is very interesting!!!! I'm having the same problem. I'm on the cylcer. I do 11 hours with a last fill volume of 1500. I do one manual exchange still have high creatinine.  The doctors say its probably my muscle mass. I've gain a lot of weigh while doing hemo during college. It was all UNWANTED stress weight. The summer after my junior year I lost it all got down to my ideal size. My senior year gain it all back with in 1 month. I tried to lose weight before graduation knowing I would switch to PD. I was working out but didnt have low calorie foods to go along with what I was doing. So i started PD with the excess weight I didnt want. I have always been a small,slight guy. So when I gain weight I put on muscle along with fat. I think it is causing me to have high creatinine numbers(the muscle mass).  My doctors and team think my muscle mass is a result of me being young. But I have tried to explain to them it is stress weight I gain. I've always dialysized at 140-145 pounds while on hemo. That was a enough mass. Now I have on too much mass for my liking.  Its frustrating because I'm just curious as to what will happen to my numbers if I get back to my usual weigh, which around 145-147 pounds no more than 150. 
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Lexxtech18
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« Reply #14 on: March 27, 2013, 04:50:42 PM »

Rechecked my creatinine again today and it's still sitting at 17.9! At least it's not going up, but it's not going down either and that's worrisome. I went from 7 hours on the cycler to 8.5 hours and one exchange during the day. But I still feel over-fluided. My calcium is really low, my phos is really high... starting to think maybe my body just can't tolerate PD.  :(
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Diagnosed with Bilateral Hypoplastic Kidney Disease - 1990
First Livinig Donor Transplant (from my mommy!) - October 3, 1996
Transplant Failed/Put on Hemodialysis - May 2005
Second Kidney Transplant (deceased donor) - July 2010
Transplant Failed/Restart In-Center Hemodialysis - February 2011
BattleScars
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« Reply #15 on: March 30, 2013, 07:17:03 AM »

I'm on CAPD 4 exchanges per day. I don't know how the cycler works but if I check my weight daily to make sure I'm not retaining too much fluid. My creatine was at like 9 before I started PD then went down to 7.5 for a while and I think it's at like 10 now. If you think you are retaining fluid make sure to check your BP and weight. That's a pretty good indicator. But it does sound like you are pulling off a decent amount of fluid through the PD. I still have about 5% kidney function and I produce a lot of urine so I don't seem to have to pull off as much fluid as the average kidney patient. That's just my experience.
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Lexxtech18
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« Reply #16 on: April 06, 2013, 11:51:48 AM »

The Nephs talk about it and we all decided that going back to hemo would be my best option now, as my creatinine has jumped to 18.8 and my hemoglobin is down to 7.2

In all honestly, I'm not really disappointed. I don't mind PD, but it's a lot of work on my part and because of the boxes and bags I always feel surrounded by dialysis. At least on hemo, you go in, do your time and you're done for a day and a half. But on PD I felt like I as constantly doing dialysis. Plus I really HATE this two foot long tube coming out of my stomach. The only thing that's really going to suck about going back to hemo is my poor right arm is probably going to get tore up putting in a new fistula or graft. Not looking forward to that at all. Other than that, I'm okay with it. :)
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Diagnosed with Bilateral Hypoplastic Kidney Disease - 1990
First Livinig Donor Transplant (from my mommy!) - October 3, 1996
Transplant Failed/Put on Hemodialysis - May 2005
Second Kidney Transplant (deceased donor) - July 2010
Transplant Failed/Restart In-Center Hemodialysis - February 2011
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« Reply #17 on: May 09, 2013, 09:14:52 PM »

I'll add my two cents.  I've been on CAPD for almost 3 years (was on hemo 5 months before that).  My creatinine level was pretty steady on hemo but in the last 3 years it's more than tripled on CAPD.  Dr's aren't worried, though.  They said I was a fast urea transporter but a slow creatinine transporter.  It could just be how good/bad a person's peritoneum is at transporting gunk through the peritoneal membrane.  Everyone's different and some people can't do PD because they are too slow or too fast of a transporter.  I know my Dr. isn't worried about the level being particularly telling of anything, but I do worry about the long-term effects.  It seems like it can't be good to have that building up, but I don't really know what ill effects it may have.   
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Diagnosis: distal renal tubular acidosis with medullary sponge kidney
3/4/2010 started hemo via sub-clavian catheter
6/15/2010 listed for kidney (on hold)
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wildcat
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« Reply #18 on: May 10, 2013, 01:30:31 PM »

I have been on PD for about 3 years.  creatine has been around 15 for a while.  Doctor wasnt concerned and was more worried about the phos, K, Ca, PTH, kt/v, alb, hgb levels.  I have been doing well on dialysis after a long period of months trying to find the right prescrition for dialysis.  I always faught for mor freedom and fewer hours on the machine while the nurses wanted me to be on longer, as I am a low transporter.  It took months but we found a nice compromise.  I like PD better than Hemo and don't ever want to be in center Hemo again. 
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Whamo
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« Reply #19 on: July 22, 2013, 04:33:42 PM »

I found this to be a very interesting thread.  My creatinine number was up last month under CAPD.  So was my phosphorus.  I've got to get that one down. 
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amanda100wilson
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« Reply #20 on: July 22, 2013, 04:49:18 PM »

A relative of mine is a biochemist and works in a hospital lab.  I asked specifically about creatinine.  It has a negligible toxicity and somhaving a high level,in your body has no real significance and will not damage your body.  Lextech18's nephrologist,is probably looking at the overall picture not just the creatinine in making the reccomendation to switch back to hemo.  Protein loss is certainly higher in PD which could account for the edema in the legs.
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
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« Reply #21 on: July 22, 2013, 06:26:11 PM »

whamo my phos is high too... i'm having a hard time remembering to take my fosrenol with each meal.
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Lexxtech18
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« Reply #22 on: July 29, 2013, 06:48:39 PM »

It seems this thead is still limping along slightly. lol So I figured I'd stop in and give an update:

I've been back on hemo for about 3.5 months or so now. A brand new, shiny fistual in my right upper arm and it works beautifully. I'm glad I switched back to hemo, honestly. I've been on for 8 years now, it's really my home. PD never suited me, especially with my work schedule and having to do extra exchanges through the day. So I'm happy and doing pretty well. Creatinine is good (post dialysis, obvs.) and all my other lab work is beautiful, even my Phos is coming down when I remember to take my Renvela.  :banghead; Like I said, my old Neph wasn't too keen on starting me on PD in the first place and I think he just became impatient with the numbers so he just decided to bring me back to hemo. Fine by me! lol

Best of luck to Whamo and Justme15! I hope things work out for you.
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Diagnosed with Bilateral Hypoplastic Kidney Disease - 1990
First Livinig Donor Transplant (from my mommy!) - October 3, 1996
Transplant Failed/Put on Hemodialysis - May 2005
Second Kidney Transplant (deceased donor) - July 2010
Transplant Failed/Restart In-Center Hemodialysis - February 2011
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