Reprieve!

[Deanne]

I had new labs run yesterday and my neph called to tell me my creatinine dropped to 3.0. I don't have to start the tranplant eval yet.      My creatinine was 3.4 before she pulled me off lisinopril two weeks ago, and she told me if the re-test came back at above 3.0, she was referring me for a transplant evaluation. I'm so on the edge that it's probably only a brief reprieve, but it all counts. 

[MooseMom]

"Reprieve" is exactly the word I've used for years!!!  LOL!  Did you have your eGFR retested?  My neph always used egfr to determine when to refer me for pre-transplant eval.  Anyway, I'm thrilled at your news and hope your creatinine will stay stable for a long time.  You just never know!!

[kellyt]

Fantastic news!  Keep doing whatever you've been doing!     

[Deanne]

My neph is going off my creatinine level for now. She said a creatinine of 3.0 equates to about 20% function for me, although the eGFR will show my function is a bit lower. I think she's taking my ovearll health and other labs into consideration -- potassium, phosphorus, BUN, etc. She also said the way to get an exact GFR would be to do a 24-hour urine test, but that it isn't really necessary right now. I hate peeing in a bottle, so that works for me.

I have to test again after the holidays.

[MooseMom]

That's great that she's looking at your overall health.  Creatinine or egfr are only two pieces in this puzzle.  Everyone is so different.  I've got my fistula ready, I'm on the transplant list, my egfr is only 15, but believe it or not, I'm not anemic and my labs are pretty darn good.  Very odd but very important.  The important thing is how you are feeling!

[okarol]

Jenna's creatinine is at 3.5 and GFR is 16 - she is going for a transplant evaluation in 2 weeks. She can hopefully be accepted for transplant, then be on an inactive status, but accruing time. Her neph agrees that there's no reason to wait for her to become too sick, or start dialysis, before thinking about a transplant.

[kellyt]

One day my neph called me and was asking me how I was feeling and such - yes HE called me, not his nurse     I was worried.  Finally he said he wanted me to stop two of my pills and go get my labs drawn in like 2-3 days.  My creatinine was in the 8's!  He said if it goes down even a little he'd hold off on dialysis.  Well, it did and he kept going down until it got back in the upper 4's or something.  My BUN was super high, as well.  I was thankful to have the "reprieve", as well, but my high numbers were caused by these two meds.  That was probably in 2007 and I didn't get my transplant until late 2008.  Thank the Lord for Neph's who know what to look for.

Congratulations again!

[Deanne]

Was one of those pills an ACE inhibitor?

[kellyt]

No, one was Zemplar and the other was a sodium bicarbinate.  I had stopped my ACE inhibitors a long time back cause they weren't helping control my BP.

[Sax-O-Trix]

If you are under 20%, why not start the transplant eval?  The sooner you can get on the list, the more time you accumulate.  The transplant eval process wasn't so bad.  My potential donor had to go through a lot more than I did.  I had to stop my ACE inhibitor last year after 6 or 7 years because of high potassium levels (were always in the 5 range).  I have quickly digressed from the mid 20's to 15% GFR after switching to a beta blocker...  Still hoping for a pre-emptive transplant, so I haven't a fistula or catheter placed yet.

[kellyt]

If you are under 20%, why not start the transplant eval?   The sooner you can get on the list, the more time you accumulate.  The transplant eval process wasn't so bad.  My potential donor had to go through a lot more than I did.  I had to stop my ACE inhibitor last year after 6 or 7 years because of high potassium levels (were always in the 5 range).  I have quickly digressed from the mid 20's to 15% GFR after switching to a beta blocker...  Still hoping for a pre-emptive transplant, so I haven't a fistula or catheter placed yet.

Unfortunately, for me that wasn't my decision.  I asked my neph the same question and he said "It doesn't work that way".  Besides, other than fatigue and muscle weakness occasionally, I felt great.  I was ver fortunate, I feel.  My GFR was between 10 and 15% when I started testing the "the list" and that was in late 2007.  I was on the list in Feb 2008.  When I transplanted in Nov 2008 my GFR was 6%.  I urinated the morning of the surgery and felt still fine.  I was very fortunate.  Some people DO start testing at 20% I think.  I believe it all depends on how you feel.

[okarol]

This is from http://optn.transplant.hrsa.gov/CommitteeReports/board_main_KidneyTransplantationCommittee_7_24_2009_10_41.pdf

Dialysis Time (DT)
The majority of forum participants and RFI comments supported the use of time on dialysis as a concept
for kidney allocation.  Overall comments with the use of dialysis time as opposed to waiting time
included:
- Concern that use of dialysis time would eliminate the option for pre-emptive transplantation
(defined as a kidney transplant that takes place prior to a candidate’s need for dialysis).
- Concern that use of dialysis time would create a disincentive for timely referral of dialysis
patients to a transplant center.
- Comments from those in OPOs that currently use dialysis time (instead of waiting time) that this
approach is working and should be incorporated into national policy.
The Committee discussed these comments and concerns and will investigate some additional metrics such
as glomerular filtration rate (GFR) <=20 mL/min.  By incorporating GFR, candidates could begin to
accumulate time when they reach a certain clinical state, even if they do not yet require dialysis.  The
National Kidney Foundation (NKF) defines stage 5 chronic kidney disease (CKD) as GFR<15 mL/min or
the need for dialysis.  However, the OPTN database only collects the date at which candidates reach GFR
<=20 mL/min so the Committee agreed to evaluate that threshold in addition to dialysis start date.

[Sax-O-Trix]

I have been told for years that the team at my hospital would start the UNOS process when I hit 19% even though I have two siblings who are a match.  I actually started testing when I was at 21% last December, but I couldn't be listed until I had three blood draws that showed my GFR levels at less than 20%.  That happened in May and I had all of the prerequisite  testing completed at that point.  They never said anything about "We'll see how you feel when you get under 20%."  It was all about hitting that magic number to qualify for the UNOS listing. 

Other than knowing I have ESRD and am at 15% function because the blood tests say so, I still do everything I have done my entire adult life.  I admittedly can't stay up all night anymore and seem to have developed some brain fog when it comes to remembering some of the names of the 275 students I teach each week.  I still feel "normal" for whatever reason.

If for some reason one of my siblings can't donate, I am glad that I will have accumulated some time on the list.   Presumably my wait won't be as long.   But then again, I haven't been through what most people here have been through, so I really don't know jack about how everything really works...

[Deanne]

My neph said as soon as my creatinine went above 3.0, she'd figure I was below 20% and eligible to start the evaluation process.

[kellyt]

Sounds about right.  For my neph it was 3.4.  Good Luck.  I hope you can hold out.