(For Those Of You On Dialysis) ... What was your creatinine when you started D ?

[ToddB0130]

Thanks for sharing !!

[cattlekid]

Mine went from 1.2 to almost 9 in the space of three months with no warning.  It went down a little, but I think it was around 8.5 when I started dialysis. 

[Poppylicious]

We *think* Blokey's was about 1500 when he was asked to return to hospital with immediate effect the day after a routine clinic.  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. 

[willowtreewren]

Carl's was 5 something. But it isn't just creatinine that determines when to start. How you feel with other symptoms should play into the decision.

Aleta

[Rerun]

Mine was 13 and I was one sick puppy.

             

[Joe]

Mine was up to about 8.5 when I got started.

[Cordelia]

Uhhhm, I'm ashamed to say, mine was 2400, which was extremely dangerously high, I was a walking textbood case of the highest creatine level ever in my hospital's history so I went down in the record highest-ever. I was on death's door     

I might add, they start dialyizing a person at 600 here where I'm from. I'm super lucky to be alive today.  i was also one very sick puppy          

[Willis]

I had been in the high 4s for YEARS then went from the low 5s Dec '10 then by Apr '11 I was over 13. I have IgA Nephropathy so I knew they would fail sooner or later but it come on very sudden and like some have said above I was VERY sick for a few months until my PD kicked in.

 

[ToddB0130]

I agree with you Aleta ..... it's BOTH the "numbers" and how you feel.  My creatinine is staying pretty steady at about 3.9 and I've got a fistula (Happy Three Week Anniversary,  Fistula !!).  I see my nephro mid December.  The fistula obviously needs to mature.  I'm not feeling all that symptomatic of anything (about the worst of it is sluggishness, tiredness).  Last labs said phos, pott, etc are in normal range.  So I'm feeling like all the meds are working okay.

But I'm also feeling pressure to 'start' D and I'm like "Are you eligible to win a toaster here or what ??" ......... I don't want to be disrespectful to the nephro I've had for about six years, but .... really ??

That's why I was asking about numbers because I don't feel like 3.9 is anywhere ready to start (basing that on how I feel as well) ........Now i'm certainly aware that things can change and maybe tomorrow I'll wake up and it will be 10 or something ..... I'm just not wanting to start until I both feel it's time (physically) and the numbers dictate it.

It's funny that way,  that your GFR needs to be at a certain number to be placed on the transplant list, etc .... I wonder if there's anything that says a doctor cannot recommend dialysis until the creatinine is XXX or higher.

Thanks for all of your answers.

[willowtreewren]

Todd,
Carl's creatinine kept creeping up over the years (PKD). When he went to his neph appt in June of 2008 and they said it's time, we were both in a bit of denial. However...he started dialysis at the end of June (we put it off for a few weeks because of wanting to visit our daughter) and immediately started feeling better. The thing was, he didn't realize just how bad he was feeling. Duh! The falling asleep for hours every day wasn't enough of a clue for either of us! 

So, within a couple of weeks he was saying that he felt 10 years younger! The decline is so gradual, that it is hard to recognize!

He had actually gotten his fistula the August before starting, so it had many months to mature. Even so, during those first weeks he STILL got infiltrated. 

It's good to be gathering all this info. Even though we had years of time to prepare, we pretty much started the journy blind.

Aleta

[beachbum]

My creatine climbed to 9.1 at one point. My last labs before I started dialysis my creatine was 8.1. Other than itching, restless legs, and edema I didn't have a lot of symptoms though.

[Subeat]

Mine was 10 when my PCP referred me to the neph, 12 by the time I was in the hospital a few days later.  I was weak, itchy, nauseous...a complete mess.

[kellyt]

I never did dialysis, but my creatinine was 5.1 the morning of transplant.  I only spiked into the 8's once and it was lowered by simply stopping two meds.

[rsudock]

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