What was your creatanine level when you started dialysis

[ToddB0130]

I know it's different for every person (based on how they're feeling at the time), but I'm curious about the numbers.  Thanks in advance !!

[cassandra]

900+ That would be in England, and The Netherlands

[Lillupie]

mine was 5.5, but im a little person at 4'11".

Lisa

[Willis]

My creatinine was over 13 when I started D. I suddenly went from a slowly increasing and closely monitored level (weekly blood tests for 6 years) in the 4s and 5s to that 13 level in 5 months. So the moral is that one can have an elevated creatinine level for a long time and then it can suddenly take off to dangerous levels. In my case it changed so quickly that by the time I had the necessary surgery and was able to start dialysis I was very, very sick.

 

[Subeat]

10 when my primary dr. first got my labs back.  12 by the time the neph I was referred to sent me directly to the ER.

[Krisna]

Originally back in 1979 it was 10 or higher.  I was only 7 and went into congestive heart failure before anyone figured out my kidneys were even failing.  Then after the first transplant failed it was 10 again and I didn't clue in that the kidney was failing.  I thought I just had the flu cause I was 16.  My doctor said, "I'm admitting you to the hospital because you need dialysis TODAY!"  I had already had a fistula since the year before because my doc knew it was coming.  After the second transplant failed it was abt 7 or so because I knew in advance that time.  Number 3 was removed due to infection and was still working perfectly.  And with the last one I put off starting dialysis so I could take one more trip to Montana to visit family.  Both my fiance and myself have family there and I knew it would hard to get over there to see them after I went on dialysis.  It actually got better for a little while after I went east of the mountains.  It was hotter in Montana and I had to drink to a lot more.  So, I was able to put it off for another month.  But my creatinine was around 12 and I weighed 98 lbs and I'm only 5 ft tall when I finally started dialysis  So, I was extremely under weight.

[Rain]

Mine was 700 when I started but I'm little. I was feel like crap and was hospitalize twice in 1 month.

I was loosing potassium and couldn't eat enough to feel better.

[RichardMEL]

Around 1000 for me in our measure (that's 11.3 US). Stayed between 900-1100ish during D years, peaked at 1200 post tx, and now is 135 (1.53 US) - YAY!

[Chris]

Mine was 8, but I felt fine. But since I was in for a hypoglycemic attack, they kept me and dropped a bombshell on me. I am not sure what my creat and BUN were, but I may have that information in the basement

[MooseMom]

OMG, these numbers you all have cited are incredible!  Mine is somewhere between 3 and 3.5, and here I was panicking.

[Gerald Lively]

I was unconscious when I was admitted to the hospital for cancer.  Blood tests there showed a number between 14 and 17 for creatinine.  Right now, that number is 3.1 or 2.9. 

Yep, at the hospital I hallucinated for about ten days.

[MooseMom]

Yep, at the hospital I hallucinated for about ten days.

Did you think you were a tea partier?  LOL!

[Cordelia]

2400. I was on death's door. I'm in Canada. I have no idea what that translates too in American labs, but I was full-blown stage 5 renal failure.

I was super itchy, a major insomniac, vomiting all the time. It was beyond bad!

My neph told me once I was stabilized on dialysis that I was about an hour and a half away from kicking the bucket.

[AguynamedKim]

I believe the conversion of Canadian/Australian/UK creatine values to US lab values is a factor of 88.  In your case, Cordelia, 2400/88 = 27.2.  Holy cow!  That is far and away the highest creatinine blood value I have ever heard of and am very happy you survived that.

[Cordelia]

I believe the conversion of Canadian/Australian/UK creatine values to US lab values is a factor of 88.  In your case, Cordelia, 2400/88 = 27.2.  Holy cow!  That is far and away the highest creatinine blood value I have ever heard of and am very happy you survived that.

O-M-G!!!!!!!! I knew it was super high in the American version......I see numbers on this site and I always wondered, what was mine with being 2400?

Yup, my neph said I had about an hour and a half to live and I would have been dead.

That's .......just ......amazing, I'm absolutely speechless!

AguynamedKim, do you know at what number they start dialyizing people in the U.S? Up here in Canada they start dialyzing you when you are at 600 for Creatinine.

Thank you so much for telling me, I always wondered.....

My neph told me I was a walking textbook case. I was the highest creatine level he had ever seen in all his nephrogogist days!!!!

[Gerald Lively]

Yep!  I was surrounded by Teabaggers.

Actually that time in the hospital was interesting (in hindsight).  I had visions of being carted into a very dark basement where there were Jewish POW’s laboring and sweating, and none of them would look at me.  Before long someone was talking to me, giving instructions to move this way and that way.  I resisted and fought the guy off, but the pounding on my chest continued and it hurt like hell.  Later I was told this was the catheter surgery.

Then I thought I was in a different hospital and there were chickens just outside my window.  I could hear them.  The room I was in looked like a janitor’s closet.  All night long (this was real) the TV on and some Mexican preacher was reading the bible.  My God, he never stopped and I never slept that night.  The chickens turned out to be the noise from the “air” mattress I was on.

(Part real) A strange Doctor came in to my room and asked if She could change my cancer protocol to something called Procreat.  I told her no, that I had a doctor and I will go with his protocol, which turned out to be antibodies.  The a group of nurses followed this doctor in the room and tried for hours to convince me to change prorocols.  I talked to Security and he wouldn’t do anything.  I told those people it was my body and they could kiss my ass.  Around midnight I got out of bed and walked out of the hospital.

This entire time was still partially hallucinating from too many toxins.  I live 30 miles out of town up in the mountains.  The hospital called the Sheriff and at 1 AM he showed up at my front door.  First he didn’t believe I was 73 and he wanted to see the old man the hospital send him out to find. We finally convince him.  But, two hours later we drove back to the hospital.  I thought I was about to die.  When I checked back in, there was much grumbling about paperwork.  You might guess what I had to say about that one.

The next night, a nurse came into my room at 1 AM for sex.  Problem was, my wife was asleep next to me.  Besides, those days are over.  That was real, and I believe it was a joke by the male nurse I had.  She was nice looking.  My wife didn’t say a word.

Ah yes, the true adventures of Kootie J.

Gerald aka Kootie J

[Poppylicious]

We *think* Blokey's was about 1500 (but it may have been as high as 1600) when he was asked to return to hospital with immediate effect the day after a routine clinic; they had a bed waiting for him and everything.  That was a very scary day!  This equates to about 16 mg/dl when converted to American Speak.  He was in hospital for about eight days on that occasion and began haemoD on Day 6 of that stay.

[RichardMEL]

When I was on D, a guy in our unit was at 1500 being maintained by D......

The thing is with all these numbers if you can't (I think anyway) take anu lab numbe like the eGFR, creat or whatever and say "this is the point" - one person @ Cr 1000 (11.3) may be doing fine, while someone else at say 800 (9.05) might be suffering from bad symptoms like nausea, vomiting etc and need to go on D.

I am a firm believer in assessing the entire situation and not just take a number as a trigger event.

Recent studies (one which I was part of) have shown that starting D "later" (as in < 10 GFR for example) shows no real adverse trends as opposed to starting earlier. My take on this is that (obviously ) it supports m long held notion that it's not about the number, but how the patient feels overall.

Don't get me wrong I am not saying if you get to GFR of 5 and the patient says they are just a bit tired to ignore it and not do anything, but more for some common sense to apply rather than a rigid "line in the sand" at which D should or shouldn't start.

Just my two cents.

[Poppylicious]

When I was on D, a guy in our unit was at 1500 being maintained by D......

The thing is with all these numbers if you can't (I think anyway) take anu lab numbe like the eGFR, creat or whatever and say "this is the point" - one person @ Cr 1000 (11.3) may be doing fine, while someone else at say 800 (9.05) might be suffering from bad symptoms like nausea, vomiting etc and need to go on D.

I am a firm believer in assessing the entire situation and not just take a number as a trigger event.

Recent studies (one which I was part of) have shown that starting D "later" (as in < 10 GFR for example) shows no real adverse trends as opposed to starting earlier. My take on this is that (obviously ) it supports m long held notion that it's not about the number, but how the patient feels overall.

Don't get me wrong I am not saying if you get to GFR of 5 and the patient says they are just a bit tired to ignore it and not do anything, but more for some common sense to apply rather than a rigid "line in the sand" at which D should or shouldn't start.

Just my two cents.

Absolutely.  It shouldn't be solely dependent on lab results ... how someone feels is usually a pretty good indication of where things are at too! In our case, I assume they took six days to start Blokey on haemoD because they were waiting to see if his high creatinine was simply a glitch. 

I just asked Blokey what his creatinine was (usually) whilst he was on haemoD; apparently it was maintained at about 700-800.  Which in itself is obviously still very high! 

[AguynamedKim]

Cordelia, I would definitely refer to the far more knowledgeable people like RichardMel and Popplicious as to when this number indicates a start for dialysis.  Translating the Canadian value of 600 to 6.18 sounds about right as that translates to an eGFR of about 10 depending on a number of factors.  An eGFR of about 15 is generally the higher part of the window to consider dialysis - again, all depending on how you are feeling along with other possible symptoms and second order affects.  An eGFR of about 15 translates to a creatinine of about 300 (3.4) for a female.

[Cordelia]

Cordelia, I would definitely refer to the far more knowledgeable people like RichardMel and Popplicious as to when this number indicates a start for dialysis.  Translating the Canadian value of 600 to 6.18 sounds about right as that translates to an eGFR of about 10 depending on a number of factors.  An eGFR of about 15 is generally the higher part of the window to consider dialysis - again, all depending on how you are feeling along with other possible symptoms and second order affects.  An eGFR of about 15 translates to a creatinine of about 300 (3.4) for a female.

That makes sense! I say that because they told me up here they start D when you are at 600.

I'm guessing that my GFR then must have been excruciatingly low....

I was way, way past that with levels of 2400 for creatinine. I am very lucky to be alive       

[Annig83]

Mine was at 18.9, but that was right before having my son (via c-section), pregnancy really screwed my kidneys up, it gradually came back down, and I've been hovering around 6.7 for a year now.