I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: CA2001 on November 15, 2012, 03:19:23 AM
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I found out that my kidneys failed at age 26 and was on dialysis for 4 years. The cause of the kidney disease was unknown as i had no other conditions. On peritineal dialysis, my creatinine ranged between 27-32 which is very high and was about to switch to hemo dialysis as peritineal didn't bring my creatnine and BUN down enough.
I received a transplant almost 3 months ago and my creatinine is between 2.6 and 2.8. The Dr. Said blood creatinine isnt only what they look at. They did a biopsy and found that the kidney had no problems and is healthy. The Dr. Said I will do a creatinine clearance test which is more accurate.
Has anyone here had high blood creatinine this far after transplant and had it go down. I would think that since my live donor was young, it would be around 1 to 1.8.
I Just don't want to go back on dialysis for at lease 15 years but will find out what the creatinine clearance test shows.
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I had my transplant almost a year ago from my live donr who is older - she was 67 at the time of donation. I was 38. My kidney took a while to get to below 2. The lowest i,t got was 1.4, then it settled at 1.7. They did a biopsy to rule out rejection. A few days later, I woke up and could not pee. I ended up going to the ER, where a large, obstructing hematoma was discovered, and I had emergency surgery to remove it. The next morning, I had lost so much blood that I needed 2 units, plus a round of dialysis due to high K. I had acute kidney failure, creatinine got as high as 9.9. That was just over 7 months ago. My creat has now settled at around 3.3 - 3.6. The general consensus now is this is where it has settled, but it "may" continue to go down. I may have a permanent kidney injury, a thinning of the cortex where the hematoma was.
All this to say, no one has mentioned putting me back on permanent dialysis. Temporary dialysis was the only thing discussed, and that was when I was in the hospital (same for post-tx, but it was never done). As long as you remain stable, you should be fine. Of course, your other #'s matter as well. My K, phos are both good. My PTH is high, so I'm on calcitriol to try and bring that down.
I hope this helps...
KarenInWA
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They could also BLOW your kidney from doing a biopsy. People! Stop with the biopsy happy surgeons!
You can do a 24 creatinine clearance or just blood work. Biopsys are so invasive. And then they are going to do what they are going to day anyway.... raise your medications or "do nothing" because everything is fine.
As long as it doesn't go up and settles at 2.4 I'd be happy. I can tell you from experience you are going to worry everyday for as long as it does last .... even for the next 15 years.
Transplant.... worry worry worry. I don't know how to stop the worry.
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Lori Hartwell of the Renal Support Network got a kidney transplant and her creatinine never got below 2.2. That kidney lasted 20 years (and it was from a deceased donor.) There are no guarantees with any transplant, but with a healthy lifestyle and a little luck, it may last awhile. As long as you're not getting too much Prograf (that can elevate creatinine) and your other labs are ok, try to enjoy the freedom from dialysis. Live your life!
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It took MONTHS for my Blokey's creatinine levels to get down to a fairly stable and consistant 150 (about 1.7 in AmeriSpeak and still verging on the high side) and it hovers around that now, 13 months later. His team don't seem worried at all (he's had a biopsy; his creatinine shot up to 1000 [11.3] a few months post transplant and they needed to rule out rejection) and they seem happy because it's remaining stable, along with all his other labs.
I hope they're able to put your mind at rest with the clearance test.
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Thank you Rerun! I think they jump to biopsies way too fast. It's a horrible procedure with so many risks and often no information gained. I hate them.
For CA2001, while your creatinine is a little high, it's not dangerously high. If it doesn't keep going up and if your other blood test results are ok, I think you're fine. A creatinine clearance is always more accurate and a lot less invasive. Is your doctor worried or just cautious? I assume you feel better now than you did on dialysis. Keep taking your meds and getting your blood tests. The doctors want to keep you healthy. They'll help you.
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Not a doctor but you should still be pretty doped up on meds... It should go down when all those get stable. Make sure you are hitting 12 hour times. You should be due for a biopsy, if they haven't already done one...
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I kind of agree with the others.. yeah it's a bit high but as the doc said it's not JUST about the creat level - if your other labs are stable and in a normal level that shows the bean is doing the job and as long as it doesn't trend UP then it's probably OK and will take time to come down - and Lori is a good example(I thought of her too) and her 2.2.
My TC told me similar stories of people with creat levels higher than "normal" for tx ranges but if it was stable that's what mattered the most.
Yes, we know biopsy can be dangerous - I would never want to do one on a hunch. I argued out of a biopsy last year when they saw a spike in my creat and I said look I just don't want to go through that and have the cr come back down(I think I had a minor infection or something). It was over a weekend and the registrar was kind of trying to push for the biopsy and I said look, let's see the numbers on Monday, discuss with the full team, and see.. well the numbers had come back down then and they agreed it didn't make sense to do a biopsy. After seeing first hand what can happen post-biopsy it's simply not worth the risk unless there's a really good reason for it - eg: sa you stable at 2.4 for 3 months, then you go up to 2.6 then 3.. then yes.. I would test... otherwise.. stay stable, and probably over time you will tend lower... I hope so anyway.
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I had my transplant the 15th of this month. The day after, my creatnine was 2.2. The next day it was .06 and it hasn't budged since then. My Dr. told me this week that I am so small, and that is a baby's creatnine number. He said I will have to be very careful. If my number ever goes to .08, I have lost 30 percent function, and if it goes to a 1, I have lost almost half my function. Any other Dr will think it's a great number for an adult, so I will have to stay on top of it, and if I hear that number, he said to call his cell number immediately. I would never have thought of that!
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I had my transplant the 15th of this month. The day after, my creatnine was 2.2. The next day it was .06 and it hasn't budged since then. My Dr. told me this week that I am so small, and that is a baby's creatnine number. He said I will have to be very careful. If my number ever goes to .08, I have lost 30 percent function, and if it goes to a 1, I have lost almost half my function. Any other Dr will think it's a great number for an adult, so I will have to stay on top of it, and if I hear that number, he said to call his cell number immediately. I would never have thought of that!
You mean .6 and. 8. My Tx team told me creatinine of 1.5 to 2.0 is good for long term prognosis for Tx patients. I'm not a Dr. but 2.8 seems high 3 months post Tx.
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No, mine has stayed now at .05 & .06. Yes, normally a 1 is a great number, but that is why the dr. is telling me that I have to be careful, because now if mine goes up to 1, I am losing half my function. He said I have a "baby's number". I had never heard of this either.
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No, mine has stayed now at .05 & .06. Yes, normally a 1 is a great number, but that is why the dr. is telling me that I have to be careful, because now if mine goes up to 1, I am losing half my function. He said I have a "baby's number". I had never heard of this either.
That has to be wrong because if your creatinine goes too low that's another problem the doctors told me! Normal creatinine even for someone with the healthiest kidneys on earth wouldn't be below .5
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No, mine has stayed now at .05 & .06. Yes, normally a 1 is a great number, but that is why the dr. is telling me that I have to be careful, because now if mine goes up to 1, I am losing half my function. He said I have a "baby's number". I had never heard of this either.
My creatinine went down to .5 the day after my transplant. Then it was .6 for months, but crept up a bit. I think it was maybe .8 or so at my last lab. My doctor did tell me that the smaller your normal number is, the smaller the rise needed to cause concern, but no one has ever suggested that a creatinine of 1 would be a big deal for me. I think it depends on how fast it happens - if your creat went from .6 to ,9 in a week, I could see sounding the alarms, that is indeed a 50% rise. With me, it took a year or so, and has never gone above .9. Everyone on earth is slowly losing kidney function, that is just a byproduct of aging. When I was a baby (well, not a baby, but the size of a baby) they were concerned when my creatinine went up to 1.1 after my first transplant. It never came back down, and that transplant lasted 34 years, so I would say that a creatinine of 1 even in a small person can be perfectly normal. I assume your doctor is just trying to prepare you for the possibility that you may be asked to undergo a biopsy at a much lower creatinine than most transplant recipients. If it takes you years to get to 1 and there have been no sudden jumps, I would personally refuse the biopsy.
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Well, I signed onto a 3 year new drug trial study, in order to get my transplant. It includes a few biopsies, so I can't refuse them. Obviously each case is different. I tried many treatments and drugs to get a transplant with no success, so this 3 year trial, with a new transplant that is working so far, is very worth it to me. I'll just do as they say, and hope that I stay at that .05 & .06. I'm happy!!! :-)
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Well, I signed onto a 3 year new drug trial study, in order to get my transplant. It includes a few biopsies, so I can't refuse them. Obviously each case is different. I tried many treatments and drugs to get a transplant with no success, so this 3 year trial, with a new transplant that is working so far, is very worth it to me. I'll just do as they say, and hope that I stay at that .05 & .06. I'm happy!!! :-)
You should check to make sure you don't have liver disease since that can cause VERY low creatinine.
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Well, I signed onto a 3 year new drug trial study, in order to get my transplant. It includes a few biopsies, so I can't refuse them.
You can always refuse medical procedures, trial or no, it's *your* body! The consent papers you signed should have made this clear to you. Under most circumstances, it cannot affect the rest of your treatment, either.
I'm happy!!! :-)
:cheer: :cheer: :cheer:
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Geez. lol Yes, my mistake, I worded that wrong. Yes, I CAN refuse anything, and stop the trial when I want. I am not going to distrust my dr. at this point. I've had the first biopsy, it went well, my creatnine is still very low, and again, I am not going to start distrusting the Dr. who has brought me here. They are watchinbg me very closely, still 3 - 4 days per week. Sorry for my wrong wording.
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I should also say, that if this study helps any future transplants with the same high antibody problem, I do want to continue with this trial. It's well worth it to me. Because of this trial, and me (being the first), they have already added a couple more patients to the study. I'm the first in this particular study, and hope that they learn from it for all the futures.
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It might sound weird but it is true make sure your drinking plenty of water because that does effect your creatine level. Good luck with everything! :)