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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Hi @kaegee and welcome to Connect. That must be so demoralizing for your husband to have everything taste awful after his liver transplant.

I wanted to introduce you to fellow liver transplant recipients, @rosemarya @parmcat and @gaylea1, who just recently underwent transplant, all have received liver transplants and may be able to help answer questions about your husbands symptoms, while relating to some of the things he is going through and provide support for him.

Back to your husband @kaegee, to help the group, what medications is he on right now? Also, have you spoken to his doctor about this? What did they say?

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I couldn’t wait to have the meals I used to enjoy before my transplant. I ended up being disappointed because like you nothing tasted the same and I became somewhat disinterested in food. The only thing that I had and still do have is a craving for everything containing sugar.

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I am happy to meet you here on Connect.

My transplant was in 2009. My memory is that I had no taste before transplant. And I must have had taste afterwards, because I wrote in my journal about how good it felt to eat a piece of toast and have a cup of coffee as m y first meal after surgery. (Not cafeteria coffee. my husband brought me one from the coffee shop). I remember eating lots of ice cream.
My tastes have changed since transplant and I no longer enjoy certain things that I used to enjoy.

@kaegee, please bring this up to your transplant team because it is important for your husband to get enough nutrition for healing and recovery.

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@des46893

I couldn’t wait to have the meals I used to enjoy before my transplant. I ended up being disappointed because like you nothing tasted the same and I became somewhat disinterested in food. The only thing that I had and still do have is a craving for everything containing sugar.

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@des46893, Welcome you to Connect. My combined liver/kidney transplant was 9 years ago. My 'quirky' tastes have become my now norm.
How long ago was your transplant?

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@rosemarya

@des46893, Welcome you to Connect. My combined liver/kidney transplant was 9 years ago. My 'quirky' tastes have become my now norm.
How long ago was your transplant?

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

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@ethanmcconkey

Hi @kaegee and welcome to Connect. That must be so demoralizing for your husband to have everything taste awful after his liver transplant.

I wanted to introduce you to fellow liver transplant recipients, @rosemarya @parmcat and @gaylea1, who just recently underwent transplant, all have received liver transplants and may be able to help answer questions about your husbands symptoms, while relating to some of the things he is going through and provide support for him.

Back to your husband @kaegee, to help the group, what medications is he on right now? Also, have you spoken to his doctor about this? What did they say?

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@ethanmcconkey I'm going to reread the meds side effects and talk to his med team this week. Too many meds to list!

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@kaegee

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

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Cogratulations to you and your husband for a new beginning to your lives.
Kaegee, You did not say where you transplanted, but you should have a phone number where you can call a transplant coordinator. I think that you should call today. This could be something as simple as an adjustment in his medications. Only his transplant team is qualified to make that assessment. During the early days after transplant surgery he is fragile and adjusting to meds. Your new approach needs to be always proactive for the success and safety of the new liver. It is always OK to call them with questions. You will not be imposing on the coordinator! (That is a lesson that my husband and I had to learn - it is okay and encouraged to call )
Let me know what you find out.
Hugs.

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@rosemarya

@des46893, Welcome you to Connect. My combined liver/kidney transplant was 9 years ago. My 'quirky' tastes have become my now norm.
How long ago was your transplant?

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My transplant was a little over 2 1/2 years ago. I would suggest loading up on protein to @kaegee to try to get him to have plenty of protein in his diet. My recommended protein intake was set at 30 grams a day. This is supposed to help your body in the recovery process. I know this sounds like a lot but I would buy protein drinks & mix them with chocolate milk. And usually eat fried eggs for breakfast- remember no runny yolks.

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Hi all,
I think some of you may also find this discussion on Connect interesting:
- Changes after Transplant https://connect.mayoclinic.org/discussion/changes-after-transplant/

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@kaegee Hi, how is your husband doing? Has he regained his sense of taste? I sometimes wish I would lose my sense of taste, it would sure make losing weight easier. I hope his is back though, and if so did you find out what medication is causing it? I hope too that he is doing well in all other areas. I had my liver transplant in September 2016 and things have always gone well so I have been very fortunate.
We are a blessed group to live in a time when thanks to transplants we can survive life-threatening conditions.
JK

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