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 - I experienced the same thing after transplant. While I was in the hospital, I asked about it because I was shocked and no one had said anything. The nurses and doctors said that it was normal. They aren’t sure why, but I guess a lot of people experience it. I ended up back in the hospital one month after transplant for malnutrition. They put a feeding tube down my nose for a few days. It was awful.
It took a few months to get some appetite for me. Just be careful, you have to force yourself to get something in your stomach. I committed to 3 Boosts per day and then tried to snack a little. I know this might not be popular but I ended up taking 1/2 cbd/thc gummy a day in the evening for a month. I talked with my surgeon and they okayed it. I only weighed 99 lbs at that point and I just couldn’t gain. Everyone kept trying to shove food in my face. Anyway that turned me around. I didn’t feel different it just helped my appetite. After one month I didn’t need it anymore.
I want to stress I had approval from my transplant doctor, otherwise I wouldn’t have gone that route and I only did it until I had some appetite back.

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@ssapp1

@kaegee - I experienced the same thing after transplant. While I was in the hospital, I asked about it because I was shocked and no one had said anything. The nurses and doctors said that it was normal. They aren’t sure why, but I guess a lot of people experience it. I ended up back in the hospital one month after transplant for malnutrition. They put a feeding tube down my nose for a few days. It was awful.
It took a few months to get some appetite for me. Just be careful, you have to force yourself to get something in your stomach. I committed to 3 Boosts per day and then tried to snack a little. I know this might not be popular but I ended up taking 1/2 cbd/thc gummy a day in the evening for a month. I talked with my surgeon and they okayed it. I only weighed 99 lbs at that point and I just couldn’t gain. Everyone kept trying to shove food in my face. Anyway that turned me around. I didn’t feel different it just helped my appetite. After one month I didn’t need it anymore.
I want to stress I had approval from my transplant doctor, otherwise I wouldn’t have gone that route and I only did it until I had some appetite back.

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Yes that's very common I had the same issues after transplant. Lasted until I got some of my anti rejection meds lowered. Mine was after a Heart Transplant. I might mention that these threads can be set up rather interestingly as sometimes the person who started the post has moved on and the thread keeps going with new folks joining in. So I myself like to read the more current ones further done in the list. Something to keep in mind as your reading thru the posts. I personally will hit the last button on really long post to get caught up on recent additions, thanks for joining in to this discussion as we all have great experiences to share with others going thru similar issues. It so nice to realize we are not alone. It appears the current conversation is with someone named cherismikes if you would like to join into that conversation.
Blessings

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@danab

Yes that's very common I had the same issues after transplant. Lasted until I got some of my anti rejection meds lowered. Mine was after a Heart Transplant. I might mention that these threads can be set up rather interestingly as sometimes the person who started the post has moved on and the thread keeps going with new folks joining in. So I myself like to read the more current ones further done in the list. Something to keep in mind as your reading thru the posts. I personally will hit the last button on really long post to get caught up on recent additions, thanks for joining in to this discussion as we all have great experiences to share with others going thru similar issues. It so nice to realize we are not alone. It appears the current conversation is with someone named cherismikes if you would like to join into that conversation.
Blessings

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@danab, Hi Dana. I want to invite you to scroll back even farther and to meet a new member with questions about eating difficulties after liver transplant. With your post transplant eating experience, I think that you might have some helpful thoughts to share with @cherismikes.
Dana, how long did it take for your eating pattern to become more normal?

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It took me about two months. I would drink the premiere chocolate protein drinks. Kept them in the fridge and then put in the freezer for I while before I drank them. I had usually two of these a day. I also ate a lot of peanut butter. Smells were a huge issue!!!

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I don't know if this helps I was having same problem with my daughter. Called Cleveland Clinic liver team. I looked in her throat she has thrush . They gave her meds to prevent this but when she had fluid that needed drained they started her on a new antibiotic. So she got thrush she has ate a little more and only started back today things she says still taste funny but not as bad so toast and jelly or cinnamon toast and 2 protein shakes today plus a few bites of cottage cheese and one bite of pineapple. I feel like accomplished something of a victory today. Praising God and giving him the thanks he deserves.

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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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Hi Cherismike @rosemarya asked me to share some of my difficulties after transplant with eating. I'm not sure which drug it was but one of them sure made food taste bad. The 2 things I really likes the most are salads and whole meat and both of those seem to give me a feeling of severe nausea. My poor wife was so frustrated that I barley was eating and forcing down a few bites and she is a great cook. Luckily it only lasted about 2-3 months for as they lowered my meds down my appetite and taste buds started
Improving.

It seemed whole type foods like say chicken breast or a salad almost any whole meat like hamburgers or sausage were hard to eat. So my goto items seemed to be any soft foods. Particularly mashed potatoes, soups, pudding , these stick out the most and scrambled eggs were OK. Stuffing jello most of those were my goto. Plus I was doing the protein shakes but I found that one certian brand was the best. Now realize I'm someone who likes almost all foods so it was the strangest experience I ever had. Now almost 5 years later I'm trying to remember exactly how long it lasted but it wasn't super long. One other thing was eat small frequent meals also. Like 6-8 a day but maybe only a few bites each.
Mornings also were my worse time and the doctors got me an anti nausea pill to take if I felt like I was going to vomit Particularly if I was taking my meds. Hope that helps and I would say keep testing different foods, consistency seemed to me to be how it was made like solid vs soft, again the strangest experience I had with my transplant which was a heart but typically the meds are similar. I think it was the Prednisone but don't hold me to that as I was on 5 other heavy meds at the same time .
Please if I can help further let me know.
Your doing great and as my wife will attest the caregiver is an Angel to us when we are going thru this so hats off to you for helping her thru this.
Blessings

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@danab

Hi Cherismike @rosemarya asked me to share some of my difficulties after transplant with eating. I'm not sure which drug it was but one of them sure made food taste bad. The 2 things I really likes the most are salads and whole meat and both of those seem to give me a feeling of severe nausea. My poor wife was so frustrated that I barley was eating and forcing down a few bites and she is a great cook. Luckily it only lasted about 2-3 months for as they lowered my meds down my appetite and taste buds started
Improving.

It seemed whole type foods like say chicken breast or a salad almost any whole meat like hamburgers or sausage were hard to eat. So my goto items seemed to be any soft foods. Particularly mashed potatoes, soups, pudding , these stick out the most and scrambled eggs were OK. Stuffing jello most of those were my goto. Plus I was doing the protein shakes but I found that one certian brand was the best. Now realize I'm someone who likes almost all foods so it was the strangest experience I ever had. Now almost 5 years later I'm trying to remember exactly how long it lasted but it wasn't super long. One other thing was eat small frequent meals also. Like 6-8 a day but maybe only a few bites each.
Mornings also were my worse time and the doctors got me an anti nausea pill to take if I felt like I was going to vomit Particularly if I was taking my meds. Hope that helps and I would say keep testing different foods, consistency seemed to me to be how it was made like solid vs soft, again the strangest experience I had with my transplant which was a heart but typically the meds are similar. I think it was the Prednisone but don't hold me to that as I was on 5 other heavy meds at the same time .
Please if I can help further let me know.
Your doing great and as my wife will attest the caregiver is an Angel to us when we are going thru this so hats off to you for helping her thru this.
Blessings

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thank you for share the symptoms after Transplant thank God I did not feel this, after the transplant Doctor told me I can eat anything and I ate all the Hospital allow me to eat they had a list of food I can eat as well. After my 30 month of the transplant my issues were the Bile Ducts and made my Liver leves went up then 9 times of the ERCP were done, finally my leves are normal today. But 6 month ago I had Portal Hypertension and the Cirrosis started again then add Nadolol to control the Hypertension and live until my liver allow me to live. Thanks God for allow me to live day by day I have faith I will live longer

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@arqui02000

thank you for share the symptoms after Transplant thank God I did not feel this, after the transplant Doctor told me I can eat anything and I ate all the Hospital allow me to eat they had a list of food I can eat as well. After my 30 month of the transplant my issues were the Bile Ducts and made my Liver leves went up then 9 times of the ERCP were done, finally my leves are normal today. But 6 month ago I had Portal Hypertension and the Cirrosis started again then add Nadolol to control the Hypertension and live until my liver allow me to live. Thanks God for allow me to live day by day I have faith I will live longer

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@arqui02000, I just read that your liver numbers are normal today. Does that mean that the medications are working to control the Portal Hypertension and Cirrhosis? 🤞

Have you ever thought about sharing your transplant story? Here is a discussion I what to share with you. If you look at the beginning, you will see where I share some tips to help get started. (I am available by Private Message if you (or anyone) wants me to look at it before you post on the discussion)
- Organ Donation and Transplant: What is Your story?
https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/
Do you have a snapshot to share?
-Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

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@rosemarya

@arqui02000, I just read that your liver numbers are normal today. Does that mean that the medications are working to control the Portal Hypertension and Cirrhosis? 🤞

Have you ever thought about sharing your transplant story? Here is a discussion I what to share with you. If you look at the beginning, you will see where I share some tips to help get started. (I am available by Private Message if you (or anyone) wants me to look at it before you post on the discussion)
- Organ Donation and Transplant: What is Your story?
https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/
Do you have a snapshot to share?
-Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

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My Medicine is a beta block NADODO this is to control the portal hypertension but it is not for helping the Liver Levels they are normal not for the medicine they are because of the liver transplant and the 9 ERCP

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@rosemarya

@arqui02000, I just read that your liver numbers are normal today. Does that mean that the medications are working to control the Portal Hypertension and Cirrhosis? 🤞

Have you ever thought about sharing your transplant story? Here is a discussion I what to share with you. If you look at the beginning, you will see where I share some tips to help get started. (I am available by Private Message if you (or anyone) wants me to look at it before you post on the discussion)
- Organ Donation and Transplant: What is Your story?
https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/
Do you have a snapshot to share?
-Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

Jump to this post

RoseMary sure I can share to the group the Liver Transplant experience I had since May 14-2020. At Monday 01-Nov-2022 the Endoscopy have done and doctor informed there is not any varices in the esophagus and my stomach look normal. This means to me the medicine Beta Block is working reducing the portal hypertension. Nadolol helps with this but not CURE the cirrosis by next December 07 I have video appointment with hepatology doctor and I have many questions one of this is where is the doctors plan? is he plan to do the Tips? or he will keep me taking the medicine so the Cirrosis runs it self until my liver stop function well ?

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