Fear! Missed tacro doses.

Posted by lizzy102 @lizzy102, May 26 2:21pm

I don’t have any friends who would understand transplant issues. I am coming to you with my head and heart bowed. So fearful for my kidney. I missed maybe a month of Tacrolimus doses.
I went through about two months of severe brain fog caused by big doses of metoprolol to control my heart rate and plunges of blood pressure. A few days ago, I realized that tacro disappeared from my medication rotation. I am back on it but don’t know what is going to happen, hence the fear.
Grief, guilt and shame are my predominant feelings. How could I have done that to my kidney, to myself? I feel so stupid and such a failure. I just can’t stop crying and feeling hopeless – that’s the bad.
My nephrologist says that chances are things are going to be alright. He’s super reassuring. So far, my creatinine is holding firm right in it’s groove. That’s the good news.
I guess if I would ask anything of this group, it is to ask for understanding. How would you feel if you suddenly realized you’d done something like this? How do you think you’d pull yourself out of feeling like a failure? Any similar experiences out there? I’m feeling pretty lonely with all of this.
Thank you for anything you’re willing to toss out here. Of one thing I am sure, you do understand.
Liz

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Hi @lizzy102 You did the right thing contacting your nephrologist for instructions. Is he asking you to do any special testing? How long has it been since your transplant? My understanding is there are times during infections, etc when transplant patients may be directed to reduce or hold their immune suppression drugs and things work out fine. In addition to your local nephrologist, did you contact your transplant nurse coordinator?

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Thanks for weighing in, Hello1234,
I’m 22 years out on this transplant. My doc doesn’t want to do a biopsy and just wants to watch my labs. The labs are holding steady for now. I don’t have a nurse coordinator, I don’t live near my transplant center anymore. I have a transplant nephrologist who is local – and is part of a university transplant program.

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@lizzy102, I wish I were with you in person. I would wrap my arms around you, hug you, and let you cry on my shoulder. Please, dear friend, do not blame yourself for your mistake while dealing with brainfog. You are right to come here because we do understand that you did not intentionally avoid your tacrolimus. I think that you have done the best thing anyone could do in this circumstance – contacted your nephrologist. I would trust his/her judgement and guidance. It sounds like you have a gem of a doctor since he is already associated with a university transplant program. That should make it easy for him to consult with a transplant provider for further input.
I goofed last week at my post transplant checkup when I took my tacrolimus and mycophenolate twice on the eve before my labs! A call to Mayo's 24/7 emergency transplant line provided my with what I needed to know. And my labs were postponed for a day. I felt absolutely awful to have done such a thing, and the doctor on the other end of the phone was so very understanding. I know that is minor in comparison, but it is a wee bit of how you myst have felt.
I want you to keep in touch with updates. How often will your nephrologist check your labs?

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Thank you for your sweet support, Rosemary. You do know just how I feel! It’s so good to feel truly ‘heard.’
We will do weekly labs for a while. I’ll be back in there on Monday to get them run again.
It’s so scary not knowing what will happen. I lost my first transplant to sub-clinical rejection after a doctor initiated decrease of my prednisone dose. It took 6 years for my kidney to fail completely that time! I guess this whole things has triggered some of that distress.
I will keep updating here, thank you for asking.
LIZ.

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@lizzy102

Thanks for weighing in, Hello1234,
I’m 22 years out on this transplant. My doc doesn’t want to do a biopsy and just wants to watch my labs. The labs are holding steady for now. I don’t have a nurse coordinator, I don’t live near my transplant center anymore. I have a transplant nephrologist who is local – and is part of a university transplant program.

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@lizzy102 ❤ Yes, we definitely can relate to all of your feelings! I am sure each one of us has an incident similar to your story or Rosemary's story where we feel we goofed up. On top of dealing with the medical situation, we all have layers and layers of emotions related to our transplants too. So we need to remember to be kind and gentle to ourselves. We are all just human beings trying to do our best, but each of us has messed up at one time or another. Were you taking any other immune suppression during the time you missed your Tacronlimis, (Something like Mycophenolate or Myfortic)?

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Oh gosh, what warmth and kindness. Thank you, Hello.
I was on Mycophenolate and Prednisone the whole time.
The kidney is from my (now 40+ Son) he was just 20 when he donated. You couldn’t be more correct about the layers and layers of emotion I have around each of my transplants. Such a layered and complex experience. I have had the best of medical staff and the best deepest support from those who love me, so lucky (as Liam Neeson says, it isn’t because I’m special, it’s because I’ve been incredibly lucky – to paraphrase).
My feelings are rounding up a bit, less self flagellation as each of you weigh in and help me gain perspective. Right now, and in each of the coming ‘right nows’, I am going to try kindness. To breathe a bit and bring myself back to center. My wife (who gave me my first kidney in 1987) and I are digging deeper toward kindness and love as we do our mindfulness meditations, thanks to your reminders.

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@lizzy102 You just made me very happy. First, I am thrilled that you had Mycophenolate and Prednisone on board the whole time. Second, I am very happy to be a part of this wonderful community. The most important job we all have is to help each other to keep our perspective during the inevitable challenges. It's very easy for us to lose perspective during this journey. I scare myself all the time with blood work that looks elevated or something that is off. Then I post the situation and one of my fellow transplant "sisters" calms me down with a similar story. It's happened many times. Please know that we are all here for you. I think your optimistic nephrologist is correct that everything is going to be fine. Breathe 😊❤

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Everybody can screwup. Don’t beat yourself up over it. It’s great you had two good backup meds going at same time. Stay positive and know we all have you in our thoughts and prayers!!! 🤗

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Thank you so much everybody. Each of you offered just what I needed to hear. I will let you know how my labs look.

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We have all messed up with medications before. I find any time my schedule gets switched around – I'm out of town, working overtime, sick, etc – I am much more likely to mess up my meds. It sounds like you were dealing with a lot this past month. I trust your nephrologist. If s/he is not overly worried, then I would let it go. It sounds like you were still on some meds to control things, and your levels are not out of control. So time to have self-forgiveness, and maybe a bit of amnesia and forget-about-it:)
Blessings as you move forward!

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