I hope you are all doing OK. I'm 8 weeks post op now and finally seeing the benefits of billy the kid...ney 😁 my energy levels have increased massively and now my medications have been reduced, the night sweats have somewhat subsided, the only problem Is my GFR is only at 20 and creatinine is 270, I know it takes a while to level out and they have reduced my tacrolimus so think my level was to high and caused toxicity, I've also had a biopsy and no sign of rejection so just wondered if anyone else has experienced this?
Kelly xx
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Kidneykel
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Great news that the biopsy sidnq find evidence of rejection. What other factors has your medical team suspected? What was the highest GFR you got during the last 8 months?
Morning, thanks for your reply 😊 so I'm 2 months post op and the highest my gfr has been is 36 but that wasn't for verg long, they have ruled out infections and virus, the last biopsy which was about 3 weeks ago showed it wasn't rejection, my fluid collections have gone so they seem at a bit of a Los which is slightly concerning 🙈 xx
Hi Kelly. Congratulations on your transplant. Life can begin again. I had a transplant 3 years ago. My levels dropped to a gfr of 44 and creatinine around 140. My tacrolimus levels were lowered over time from around 12 to the current level of 5. I think you need about six months for levels to settle and to get back to normal. Good luck for the future. My transplant has given me my life back !
This happened to my husband. Yes, those high doses of tacrolimus to prevent early rejection can definitely increase your creatinine levels. Lowering them will improve your situation. So you should see that positive result in your labs soon. You're very early in the "tweaking process" so be prepared to see more ups and downs over the next few months as your transplant team figures out that delicate balance involving rejection and performance. Here's hoping they find that optimum place for you sooner than later.
Trust your doctors, but also make sure they are paying attention and keeping you informed. My doctor said to me many patients GFR is around 40. They’re happy with a creating of 1.6 as I recall. GFR 20 does sound pretty low and concerning. Talk to them about your concerns. But remember- sometimes a deceased donor kidney takes awhile to work or work well. Some people still need dialysis for 5 weeks after the operation! Try to hang in there, and know that recovery is not a straight line.
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