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hello1234 (@hello1234)

Tacrolimus blood levels: Do yours vary?

Transplants | Last Active: Dec 31, 2022 | Replies (32)

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@hello1234 you are very conscientious, it inspires me! I’ve struggled with tacrolimus and getting the 12 hour spacing down. I’m back to work and I have faltered on 12 hour spacing (I can be off by an hour or more occasionally). My levels are fairly steady but not always- target range is 6-8 and I now take 1 mg am, 1 mg pm though this may not be enough (liver transplant 14 mo ago).

Since summer I gained 17 lbs which my team said happens as I’m still rebuilding muscle and meds alter metabolism and blood sugar. And yet I have a weakness for getting a cappuccino and muffin in the midday “to perk me up.” 😊. I’m now making changes and joined a gym to build muscle. I am 55 so now is the time!

I hear you about coping with your CKD for many years, the hope and worry for a transplant, and then the aftermath relief and anxiety. It sounds like you’ve come a long way and I honor you. 💜

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Replies to "@hello1234 you are very conscientious, it inspires me! I’ve struggled with tacrolimus and getting the 12..."

Hi @katebw 😊
What an unbelievably kind message. I can't tell you how much your message means to me. I was really getting down on myself and you gave me a true gift. I have to remember that we are all human and doing the best we can. I start to drive myself nuts looking for the perfect numbers and trying to be perfect. Thank you for sharing that you struggle too with keeping the blood level in range. None of this is easy. And your afternoon coffee and muffin made me smile since that's my afternoon pick-me-up of choice too!
Thank you again @katebw
You are wonderful to jump in to help me and I wish you a very happy and healthy new year! Congrats on your 14 month post liver transplant and please keep me posted on your progress on your new exercise program. That's another project that's on my list for 2023…getting back some muscle tone.