still questioning dialysis and on transplant list

[marlinfshr]

Well I just got a call from my transplant coordinator and they have received all my tests and can go ahead and list me. However, at first she said I can't be listed because my GFR was at 28 and it needs to be less then 20. I then reminded her that I was on dialysis and she said that I can go ahead and be listed then.

Now I am beginning to question this whole mess and had a nice conversation with her in which she said to definitely have a talk with my new nephrologist. (went on PD so my doctors are changing). She said my creatinine was at 2.8 with a GFR of 28 and even double checked that she had the correct person. This was bloodwork done at a lab outside of the clinic. The DR in which all this info was faxed to at the end of Aug was the DR (I call him DR dialysis because I feel in his mind everybody needs dialysis and I'm glad to be done with that A-hole) had originally told me that they will pull me off dialysis if my creatinine went into the 2's. Other DR's on that team originally told me that there was a chance that my kidneys would recover though it could take some time. I have had a high creatinine for years after chemo and the dye used to place a couple stents in my heart after a heart attack this past April raised my creatinine to 7 and put me on dialysis in which DR dialysis took over.

My big questioning now is that in the clinic my creatinine has been 5.5 to even 6.5 a few days after my PD catheter was placed but went back to 5.5 the following week,, but the lab I used for blood work to send to the transplant team showed it at 2.8. I have no symptoms but anemia which climbed up to around 12 on it's own from a low of 8.1 at the hospital after my heart attack. I also still pee a bunch in which I finally got my first 24 hour urine test right after I started PD and it showed good numbers. I just did another this week in which I'm waiting for results. They did not have me do any tests other then monthly blood draws while on HD.

Even my PD nurse has mentioned to ask my DR if I can do less exchanges because everything is showing real good and that I should be able to get by with 3 or even 2 per day. She said a couple patients only do a couple per day. My KT/V was at 4.7 last time it was checked. So I seem to have a lot of questions to ask my new nephrologist next Monday when I see her.

I guess I should be happy that I am going to be listed for a transplant but in reality I am back to questioning having to do this dialysis after talking to the transplant coordinator.

[okarol]

I will be watching your progress with interest. My daughter was at GFR 13 and creatinine at 4.5 so she started PD a couple of weeks ago. Her numbers have been steady for 7 months but they kept trying to predict when to start, so here we are. She is only doing 2 manual exchanges a day for now, and we will see what her labs are in a week.
Your numbers might be good BECAUSE you are on dialysis. But it's encouraging that you might regain function. If your kidney failure was acute rather than chronic, there's hope! The only way they can really know is to reduce or stop dialysis, but you'd need to be followed closely by your nephrologist.
There's no reason not to stay on the wait list until you know for sure. It takes years to get a transplant, so it's unlikely that you'd get a call soon (it's rare to get one right away, but it can happen.)

[marlinfshr]

Yea, I intend to stay on the list as either way my kidneys aren't good---even if they've improved a bit from right after my heart attack I'm sure they'll still get worse over time. I'm type O+ so that is 3 to 5 years here.

I might be ranting for nothing but I have been known to to that sometimes. I posted right after getting off the phone with my transplant coordinator so I was just a tad upset and didn't have time to think. Now I've thought.

I know that my lab draws done at the dialysis clinic were always right before I started dialysis so I had "dirty" blood since I'd be coming off almost 2 days without it. Thinking back I might have had my blood drawn for my transplant evaluation right after a 6 - 10AM dialysis session because the labcore building was right next door so in that case my blood would have just been cleaned about 1/2 hour before it was drawn. Thinking of it that way it seems everything is right, though I hope to be able to do 2 exchanges a day. It would allow me to go back to work full time.

[Riki]

Do they not do clearances when they do blood draws on you?  Here, they do pre and post blood work, so they can tell how well dialysis is actually working by the blood.. I wouldn't think that your creatnine would change, since I don't think it's one of the toxins that's cleared out.. mine has stayed around 900 (no idea what that is in the American numbers) for the last few years