Loss of taste after liver transplant

Posted by kaegee @kaegee, Dec 9, 2018

Hi everyone, my husband is 14 days post liver transplant. He has completely lost his sense of taste and even worse, nearly all food and drink (besides water) taste awful to him. Has anyone else experienced this? Do you know what medication causes it? Does it go away? What did you find you could tolerate the taste of to eat or drink?

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@kaegee

My husband transplant was 15 daya ago. Its hard to get him to eat anything!

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I am having same trouble with our daughter. She says nothing taste good. She will take a few bites and one protein shake a day.

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Our daughter had transplant was wondering if there is any one thing to get her to eat better. I know that anesthesia takes your appetite away. But it has been 5 weeks.

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@cherismikes

Our daughter had transplant was wondering if there is any one thing to get her to eat better. I know that anesthesia takes your appetite away. But it has been 5 weeks.

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@cherismikes - I'd like to welcome you to Connect. Please pass on to your daughter my sincere congratulations for her liver transplant. In spite of the lack of taste, I hope that she is making a satisfactory recovery.
When I had my transplant (liver and kidney) 13 years ago, I had lost my sense of taste before my transplant. And then it came back, but some of my food preferences did change. I only remember how good a piece of toast and a cup of coffee (that husband brought from coffee shop tasted to me.

Some thoughts I have are - Does your daughter have any food requests that might be attractive to her? Is she getting sufficient nourishment from the shakes?
Cherismikes, I am not a medical professional, just a patient like your daughter. I would also be concerned and frustrated if I felt like this after 5 weeks. If you have not already done so, I encourage you to contact her doctors in the Transplant Department where she transplanted. At Mayo, I have a nurse who is assigned to my case and I can message her thru the patient portal. Are you able to contact her transplant team? What are they saying about her sense of taste and whether it is related to medications?

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Yes we have a transplant coordinator for some reason when she calls it goes straight to voice mail. Yes the shakes are great 30 grams of protein on each one. Seems like breakfast is the only meal I can get her to eat trying to get fruits and veggies in her is the hard thing her potassium levels keep yoyoing. I really just wanted to make sure she is getting the right vitamins so she heals properly.Thank you for letting me know this happens.

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@cherismikes

Yes we have a transplant coordinator for some reason when she calls it goes straight to voice mail. Yes the shakes are great 30 grams of protein on each one. Seems like breakfast is the only meal I can get her to eat trying to get fruits and veggies in her is the hard thing her potassium levels keep yoyoing. I really just wanted to make sure she is getting the right vitamins so she heals properly.Thank you for letting me know this happens.

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@cherismikes, You are a good mom-caregiver. Your daughter is fortunate to have you to look after her.

My taste came back right AFTER my transplant, so my situation is different than your daughter's situation. I am only speaking from my experience that I did eat after transplant, with some different food choices.

A voice mail is a good way to get message to/from nurse. What did the nurse say about your daughter's eating and the loss of taste? Are your daughter's labs showing that she is getting the needed nutrients?

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@rosemarya

@cherismikes - I'd like to welcome you to Connect. Please pass on to your daughter my sincere congratulations for her liver transplant. In spite of the lack of taste, I hope that she is making a satisfactory recovery.
When I had my transplant (liver and kidney) 13 years ago, I had lost my sense of taste before my transplant. And then it came back, but some of my food preferences did change. I only remember how good a piece of toast and a cup of coffee (that husband brought from coffee shop tasted to me.

Some thoughts I have are - Does your daughter have any food requests that might be attractive to her? Is she getting sufficient nourishment from the shakes?
Cherismikes, I am not a medical professional, just a patient like your daughter. I would also be concerned and frustrated if I felt like this after 5 weeks. If you have not already done so, I encourage you to contact her doctors in the Transplant Department where she transplanted. At Mayo, I have a nurse who is assigned to my case and I can message her thru the patient portal. Are you able to contact her transplant team? What are they saying about her sense of taste and whether it is related to medications?

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I did they said feed her several times a day at just a few bites so I have finally feel relaxed about it she will have 2 -30gram protein shakes a day and 4 or 5 few bites meals a day until her appetite returns thank you for encouragement.

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@cherismikes

I did they said feed her several times a day at just a few bites so I have finally feel relaxed about it she will have 2 -30gram protein shakes a day and 4 or 5 few bites meals a day until her appetite returns thank you for encouragement.

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I know you must be relieved to have guidance from her nurse! Our transplant nurses are wonderful!

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@rosemarya

I know you must be relieved to have guidance from her nurse! Our transplant nurses are wonderful!

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Yes so helpful I am just catching on that I can call these people and they are so helpful.

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@rosemarya

@cherismikes, You are a good mom-caregiver. Your daughter is fortunate to have you to look after her.

My taste came back right AFTER my transplant, so my situation is different than your daughter's situation. I am only speaking from my experience that I did eat after transplant, with some different food choices.

A voice mail is a good way to get message to/from nurse. What did the nurse say about your daughter's eating and the loss of taste? Are your daughter's labs showing that she is getting the needed nutrients?

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Her potassium is a little high but then it will go low they said this will straighten out as she gets farther out from transplant. Her Magnesium a little low. But everything else is ok they adjusted one of her anti rejection by increasing it which made her bp go up for a couple days but it is back to normal her platelets have come up but hemoglobin is a little low. This is just so scary for me this was our athletic child that was a gymnast and cheer leader and always healthy eater. They say she is doing well she did have to go back into the hospital week before last she had fluid around her right lung from having acides before the liver transplant. I thought she was losing to much weight but that is the fluid still coming off. The not eating well is just so scary when she needs the nutrients to help

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