1. < Transplants

Tacrolimis and Minute Maid Lemonade

Posted by hello1234 @hello1234, Aug 22, 2023

Hi Transplant Family!
I know grapefruit, pomegranate, green tea should be avoided. Do you drink lemonade when taking Tacrolimis? I drank a bottle of Minute Maid Lemonade at the mall (I was so hot and Florida thirsty!) and now I am regretting it. ...Do you think a bottle of Minue Maid lemonade is an okay thing to drink while taking Tacrolimis?

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 13, 2023
In reply to @zbob "Regarding glaze WITHOUT Seville oranges: Within days of my discharge, I had a severe longing for..." + (show)
@zbob

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

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@zbob, Congratulations on your January Transplant!! I'm happy to meet you here and am honored to Welcome you to Connect.
My transplant was in 2009 and life has been a good learning experience. Connect is a safe place to share our stories, and use our experiences to support and encourage others. I appreciate your 'study' of marmalade and Seville oranges! Thank you for sharing.

Zbob, Would you share a little about transplant experience? What organ did you receive?

REPLY
sherry4always | @sherry4always | Aug 8 10:28am
In reply to @hello1234 "As always, THANK YOU @loribmt 🥰 You sure do know me... How did you know I..." + (show)
@hello1234

As always, THANK YOU @loribmt 🥰 You sure do know me... How did you know I was holding my breath?
Thank you so much for coming to my emotional rescue regarding the bottle of lemonade and providing the information about the "cuties". Knowing you are there on Connect, always gives me great comfort!
I am going to recover from my panic attack and go back to breathing now. ❤

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What is the "normal or good number for Tacrolimus"? Any help would be greatly appreciated!!!
Sincerely,
Sherry Y. (Caregiver of a whole liver transplant thankfull for every day)

REPLY
1 reply
hello1234 | @hello1234 | Aug 8 12:00pm
In reply to @sherry4always "What is the "normal or good number for Tacrolimus"? Any help would be greatly appreciated!!! Sincerely,..." + (show)
@sherry4always

What is the "normal or good number for Tacrolimus"? Any help would be greatly appreciated!!!
Sincerely,
Sherry Y. (Caregiver of a whole liver transplant thankfull for every day)

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Hi @sherry4always 😊
Did the doctor give your husband a "target range" for the Tacrolimis blood level?

REPLY
1 reply
sherry4always | @sherry4always | Aug 8 12:57pm
In reply to @hello1234 "Hi @sherry4always 😊 Did the doctor give your husband a "target range" for the Tacrolimis blood..." + (show)
@hello1234

Hi @sherry4always 😊
Did the doctor give your husband a "target range" for the Tacrolimis blood level?

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No he's a regular PC DR. NOT FAMILIAR WITH TRANSPLANT PTS AT ALL.
SINCE HE'S MORE OR LESS FORBIDDEN TO GO TO IU/METHODIST THE HOSPITAL WHO DID THE SURGERY, WE ARE LOST AS TO WHERE TO TURN.
1. A HEPATOLOGIST?
2, GI/ ENDOCRINOLOGIST?
3.TRY AND FIGHT AGAINST THE NP WHO BANNED HIM FROM THE HOSPITAL WHERE HE RECEIVED THE LIVER.
I DIDN'T KNOW A NURSE PRACTIONER WAS THAT POWERFUL!!!

THEY PUT IT IN ALMOST KILLED HIM AFTERWARDS & NOW CHARTING MISSED APPOINTMENTS THAT WERE NOT MISSED. DON'T THEY HOLD ANY RESPONSIBILITY TO THE PT IN THIS STATE ?!!

REPLY
2 replies
hello1234 | @hello1234 | Aug 8 2:05pm
In reply to @sherry4always "No he's a regular PC DR. NOT FAMILIAR WITH TRANSPLANT PTS AT ALL. SINCE HE'S MORE..." + (show)
@sherry4always

No he's a regular PC DR. NOT FAMILIAR WITH TRANSPLANT PTS AT ALL.
SINCE HE'S MORE OR LESS FORBIDDEN TO GO TO IU/METHODIST THE HOSPITAL WHO DID THE SURGERY, WE ARE LOST AS TO WHERE TO TURN.
1. A HEPATOLOGIST?
2, GI/ ENDOCRINOLOGIST?
3.TRY AND FIGHT AGAINST THE NP WHO BANNED HIM FROM THE HOSPITAL WHERE HE RECEIVED THE LIVER.
I DIDN'T KNOW A NURSE PRACTIONER WAS THAT POWERFUL!!!

THEY PUT IT IN ALMOST KILLED HIM AFTERWARDS & NOW CHARTING MISSED APPOINTMENTS THAT WERE NOT MISSED. DON'T THEY HOLD ANY RESPONSIBILITY TO THE PT IN THIS STATE ?!!

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Hi @sherry4always
I am so sorry to hear about your experience.
I had a kidney transplant so I am going to let a more experienced liver transplant patient respond to your question.
When did you have your husband have his liver transplant?
I think he is going to need a relationship with an experienced local Hepatologist that is familiar with liver transplant and the immune suppression meds that maintain the transplant, but I am not positive.
I am hopeful that a liver transplant patient may jump into this discussion.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 8 2:38pm
In reply to @sherry4always "No he's a regular PC DR. NOT FAMILIAR WITH TRANSPLANT PTS AT ALL. SINCE HE'S MORE..." + (show)
@sherry4always

No he's a regular PC DR. NOT FAMILIAR WITH TRANSPLANT PTS AT ALL.
SINCE HE'S MORE OR LESS FORBIDDEN TO GO TO IU/METHODIST THE HOSPITAL WHO DID THE SURGERY, WE ARE LOST AS TO WHERE TO TURN.
1. A HEPATOLOGIST?
2, GI/ ENDOCRINOLOGIST?
3.TRY AND FIGHT AGAINST THE NP WHO BANNED HIM FROM THE HOSPITAL WHERE HE RECEIVED THE LIVER.
I DIDN'T KNOW A NURSE PRACTIONER WAS THAT POWERFUL!!!

THEY PUT IT IN ALMOST KILLED HIM AFTERWARDS & NOW CHARTING MISSED APPOINTMENTS THAT WERE NOT MISSED. DON'T THEY HOLD ANY RESPONSIBILITY TO THE PT IN THIS STATE ?!!

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Oh gosh, @sherry4always. I can see you have a difficult situation on your hands and you're spitting mad - or at least that's what I think the message in ALL CAPS means. Using all caps in an online forum usually denotes shouting.

It sounds like your husband needs the guidance of a transplant specialist. Currently, he doesn't have access to the team who performed his liver transplant at Indiana University Health Methodist Hospital. Have I got that right?

My suggestion would be to start by contacting the Office of Patient Expeience or Patient Advocacy at IU Health. I think I found the numbers for you here https://iuhealth.org/patient-family-support/rights-responsibilities/patient-advocacy

It is really important to get your question about Tacrolimis and the target range specific for your husband answered by a professional who knows his medical history. I hope you can get things resolved with the care team.

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