rejection anziety

[cabinjar]

16mos post transplant creatine range 1.2 1.4 labs have have come back 1.58 gfr lower at 53 ,and allosure tst higher everytim.although still under1. At almost a yr and a half out should i be more stable, or is there just no ryhme or reason to this whole thing. no matter how long you've been transplanted.Nerves frayed very concerned about rejection... any suggestions

[Eyak1971]

Experiencing the same inconsistencies. Transplant team doesn't seem to be concerned. I guess it is part of the process. Noticed it varies according to my water intake. Anxiety also seems part of the process. Try to live more and worry less but talk it over with your team. Mine seem to be Good listeners. Take care and keep us posted.

[larrymontague826]

I am 2+ yrs. post transplant. I would advise to listen to your post op. team and drink lots of water. Even if you are not thirsty you should sip some water. For the anxiety I found that exercise helped me more than anything.

[cabinjar in reply to larrymontague826]

thank you ,i appreciate you taking the time to respond . it helps...

[Bunkin]

Numbers will fluctuate. Try not to worry. Your doctor sees it and if concerned would let you know😊😊

[cabinjar in reply to Bunkin]

just hearing some positve words have helped,so thank you

[Norken]

I am 23 months out and I speak from experience. I know it is easier said than done, but please don't worry. My allosure tests have risen up to 2.87. My creatinine has never been below 1.3. It's been a roller coaster of plasmapheresis, rituximab, solumedrol, thyroglobulin treatment, and now actemra infusions, and finally, my allosure dropped to 1. My creatinine is still hovering in the 1.3 category which is good because it did pop up to 1.8 at one time. The thing I want you to try and focus on is with today's medical advances, the allosure test tells the doctors way before rejection that you are headed in that direction and that gives the doctors a chance to cut it off and hopefully reverse it with treatment before it hits and before any damage is done to the kidney. As long as the number is below 1, you are ok. If it creeps up over 1, the doctors have a bag full of tricks up their sleeves to reverse it. If I only knew then what I know now about allosure, rejection, and treatments, I would have never lost a night of sleep. So I get where you are coming from and hope this alleviates some of your worries. 🙂

[cabinjar in reply to Norken]

thank you for the comforting words,its already done the mind good !

[WYOAnne NKF Ambassador]

I know it seems scary...but most of us post transplant recipients have gone through this. My creatinine jumped all over for the first 2 years. It then settled down to where I am today - 22 years post transplant with a creatinine of 0.9 - 1.0.We are all different so - Please remember to always talk to your transplant team. They are out there to help - calm your anxiety and help when it is needed.

Take care and keep us posted.

[wind00]

Like wyoanne my numbers were all over the place for a few years after transplant. Difference is that I was 1.3 to 1.7 creatinine...for 21 years. Try to avoid over analyzing labs in the short term. There is rhyme and reason as you get further out. Being vigilant is good but don't let it take over and steal the great gift you've received.

[cabinjar in reply to wind00]

thank you for the support it means alot. your absolutely right about not letting it steal the joy of the great gift i have received.i guess sometimes alittle perspective is in order.in other words. GET BUSY LIVING...