Update

[tigtink]

Just wanted to check in for an update. It has been a year now since I had a biopsy to figure out why my baseline creatinine increased. I am happy to report that since then my creatinine has stayed rock steady between 1.35 and 1.45. Today it was even lower at 1.29, my best since the biopsy. I was hesitant to consent to the biopsy but now I am glad I did. It reassured me that there was no rejection. They increased my tac range and my mycophenolate dosage after the biopsy and there has been no further creatinine increase. Now I just have a new normal. I hit my 3-year anniversary in September and have had no issues at all since the biopsy (other than a weird tac result which seems to have been a lab error). Stable is a wonderful thing at this point!

[kristina]

Dear tigtink,
Well done! I send you my heart-felt congratulations to your great efforts and I am very pleased about your great success! I also remember being concerned at the time about your forthcoming kidney-biopsy and now I am, like yourself, very glad that it has turned out so well!
Take great care and I send you my kind regards and best wishes from Kristina.

[SooMK]

Excellent!

[okarol]

So happy to see this. It's always difficult when numbers seem to be trending in the wrong direction.
Best wishes for continued health!

[cassandra]

Well done


 

[iolaire]

I'm glad to hear your update.

[MooseMom]

This is good news, tigtink!  Thanks for the update.

Two things occur to me.  One, did you have an allosure test before opting for a biopsy?  (My apologies if you've already talked about this and I just missed it.)

And two, while it is certainly important to keep an eye on creatinine, we can't ignore our other lab results.  If they are all within normal range, it eases the worry a bit.

Congrats!  I hope you are breathing easier now!

[tigtink]

Yes, MM, they did an Allosure test at the time of the biopsy. it came back as .29 and they were not concerned about it. All my other labs have always been normal. I have a small amount of protein in my urine but it is not anything they worry about. They test the protein/creatinine ratio every month and it has not increased at all over the past year.

I am so pleased with the care I have received from UW Madison. My prior transplant coordinator and I communicated mainly through MyChart but the one I have now prefers to call me directly. More times than not she calls me within a few days after my labs come in even when the results are within range. She is very hands on and responsive, returning my calls within hours. I switched to mail order for my meds because I had so much trouble with the local Walgreens messing up my tac prescription. UW's mail order pharmacy has been great. Even my nephrologist here in Michigan is amazed at how hands on UW transplant center is this far after the transplant. I see him every six months just to check in, but I have not needed him much because the transplant center has been so responsive. The best decision I ever made was waiting for UW for my transplant. And without what I learned here at IHD I would not have even considered it!

[MooseMom]

I am really happy for you, tigtink.  If UW isn't worried, then you don't have to worry, either.

I have used UW's mail order pharmacy from the very beginning and have always had great service from them.  Everyone is just so nice and responsive.  I do use MyChart exclusively, though, in communicating with my coordinator, although if there should be some sort of emergency, I know they'd contact me directly.

I have never seen my "old" local nephrologist since I've had my transplant.  UW has never required me to do so.

I'm very glad that you feel happy with your decision to wait for UW for your transplant!  Keep us updated with your progress.  Even hearing that "nothing is going on" is good news because you don't really want anything to be "going on".