Tacrolimis and Minute Maid Lemonade

Hi @johnnoregon 😊
It's so very nice to meet you!
Congrats on your 2 year transplant anniversary, that's terrific!
It's great to hear that you have a nice steady blood level of TAC.
What do you think is the secret? ....Do you take your Tacrolimis on an empty stomach every morning?
What are some of the suprising or unusual "avoid" ingredients that you normally look out for in addition to the usual suspects like grapefruit and pomegranate?
Thank you so much for joining in. I am happy that lots of transplant patients from other centers all join into this site run by Mayo. They make sure everyone feels welcome! 😊

I have been taking turmeric with pepper supplements for over a year. Although I don't go to Mayo, my transplant team said that it was fine for me (double lung transplant recipient). I have had no adverse effects and my Tach levels have been good. In fact they reduced my dosage since I have been taking the turmeric.

Hi @chickytina 😊
It's great to hear from you!
Very interesting info regarding your turmeric supplement.
What is your current Tacrolimis blood level target? Did they lower your dosage or lower your target range recently?
(I am thinking if they lowered your TAC dosage, maybe the turmeric is elevating the TAC just a little?).
Anyway, I am happy to hear that all is going well!

I am a whole liver transplant so maybe the rules apply for liver transplant and not lung.
ajdo129

At my appointment last month, my level was 7.7, which is within the levels that they are looking for. They didn't lower my target range, just the level from 6 mg a day to 4 mg. Based on what the doctor said it was the timing of when I had my transplant to when they lowered my dosage, which was back around May (1 year after surgery).

Thanks for the scoop @chickytina 😊
It looks like your transplant journey is going great! My TAC range is 6 to 8. Two weeks ago, my blood level tested at 5.7 (low) and this week it tested 8.7 (high). Both numbers are slightly out of range. I feel like I am Goldilocks living in the Three Bears children story waiting for the blood result to be "just right!" LOL ❤

Regarding glaze WITHOUT Seville oranges: Within days of my discharge, I had a severe longing for sweet and sour chicken, but the dire warnings about marmalade, grapefruit etc. (both printed and repeatedly mentioned by nursing and nutritionists) worried me. So I looked up ingredient lists on line for both McDonalds dips and Kikkoman's bottled sweet and sour sauce. Neither uses Sevilles, and (it's been quite a while) as I recall, neither used citrus: pineapple was the base. Yay!

Too bad I waited 10 months to log on to this group.

Best wishes, all.

--bob

Thank you so much @zbob for the scoop on McDonald's and Kikkoman's sweet and sour sauce...very helpful! It's a pleasure to meet you! I am happy that you logged on to this discussion. 😊 Are you a new kidney or liver transplant recepient?

My transplant took place in January. Today is my first visit to Connect, but it was at my wife's urging that I finally signed on; she's been following the group all along.

Lately I tested positive for CMV, and was prescribed Valcyte. Since then, I've been itchy in addition to the tiredness and other typical symptoms of the illness. The virus has now been undetected for two weeks, and the Valcyte was stopped. Symptoms persist, and Wifey noted that others had problems like mine. Maybe I'd feel less worry knowing that I wasn't dealing with a unique problem, she said, and suggested I look in. So here I am.

I see a lot of people have the same CMV symptoms, and others, that I deal with. I empathize with all of you, and wish I had some suggestions. I don't. But I did see that citrus question and, it being the first thing I researched after leaving the hospital, I decided to comment on that first.

I'll be lurking. Best wishes, all.

--bob

@zbob I am sooo happy that you took your wife's advice and logged into Connect! She is correct that this Mayo Connect Transplant Support Group (Family) is incredibly knowledgeable, supportive and comforting....Everyone is amazing!
It is fantastic to be able to discuss challenges with transplant friends that have gone through the same challenges successfully. Feel free to start a new discussion when you have a question and you will see everyone will join in and help you!
I am a three year post kidney transplant patient who experienced CMV in my first year, and then about a year later, I tested positive for the BK virus. Both of these opportunistic infections like to strike when the immune suppression is a little too high (When you are over-suppressed).
In addition to taking Valcyte, was your immune suppression meds lowered in dosage or changed? Are you currently taking Tacrolimis and Mycophenolate or something else?