Loss of taste after liver transplant

Arqui, those are good questions. Did you have a chance to ask the doctor your questions during the video appointment? What did you learn?

@kaegee - I didn’t loose my sense of taste, but food did taste terrible after transplant. It happened in the hospital right after the transplant. The nurses said that it happens.
After a month I ended back in the hospital for malnutrition. They put a feeding tube down my nose- it was horrible. I had to commit to drinking a minimum of 3 boosts a day and trying to get something in my stomach in between.
I ended up taking a cbd/thc edible, which was approved by one of the transplant surgeons. I am small so I only took 1/2. It helped quit a bit. At about 3 months post transplant I started eating more normally. I only took the edibles for 1 month and only at night. There are also prescriptions your doctor can give your husband to try to increase appetite.

Has anyone experienced loss of appetite after liver transplant? I’ve seen a few articles that show this happens. But sharing your own trials with this would be much appreciated. Sometimes for a brief moment I can taste things like lemon or lime and it tastes so good. My husband is a gourmet cook and makes all o my favorite foods and I tell him they’re wonderful so as not to hurt his feelings but I taste nothing. I just don’t understand how it could have changed and how it could be all encompassing. I’m missing out on one of the great pleasures of life but feel guilty because I should be grateful for being alive. Is there someone that has experienced any of this.
I have one more question please. When I woke up back in my room after the transplant I was partially deaf in both ears. I was not completely out of sedation and kept telling the staff there was something stuck in my ears and I could barely hear. They kept telling me there was nothing there. Tomorrow will be 1 year since my transplant and I now wear hearing aids. There is no explanation as to what happened to my hearing. Is there anyway possible that someone else could possibly have experienced something like this or may have an answer how this could happen? Thank you for reading such a long text.

Welcome, @123sandy. I moved your post to an existing discussion of the same name:
- Loss of taste after liver transplant https://connect.mayoclinic.org/discussion/loss-of-taste-after-liver-transplant/

I did this so you can read previous posts and connect with members like @des46893 @rosemarya @cherismikes @ssapp1 @danab @crystalfaye @arqui02000 and others.

Sandy, has your taste changed or evolved over the past year?

Welcome, @sandy123. Congratulations on your liver transplant!
I am a liver and kidney transplant recipient and I also remember lack of appetite after my transplant. It was concerning to me because my transplant team told me that I needed to gain weight and muscle mass. I was totally shocked at how thin I was after the ascites and edema disappeared after the surgery - I was skin and bones and it hurt to sit in a hard chair wothout a pillow on the seat.
In my pretranplant period, I was on dialysis and on a restricted diet. I also had no sense of taste, except for lemon or cinnamon which I added when appropriate. I also ate only because of a threat of a feeding tube. I was amazed that immediately after my surgery that some tastes came back, but I could not tolerate the smell or taste of red meat or pork! And I still tend to shy away from those meats.

Our medications do affect appetite and I'm not surprised that they can affect taste. I commend you for trying to eat, even when you don't taste because you do need the nutrition.

Have you discussed this wiith the transplant team? They might be able to offer suggestions or to let you know how long this might be a problem for you. (because each one of us responds differently to medications) I suspect that overtime, as your meds are adjusted, that your tastes will return to normal.
How long ago was your transplant?

hello, @rosemarya
Thank you so much for your reply. My transplant was 1yr ago yesterday. I’ve had so many of the same reactions that you’ve described. The weight loss, worrying about a g-tube, the smell of meat. I can’t watch fast food commercials without having a gag reflex. Also, whatever I’m eating is dry and makes it harder to get down. Your reply made me feel much better. That it’s not in my head. I don’t remember telling the team about these reactions but my 1 yr visit is in 2 weeks and I will bring them up after getting your reply. Thank you again. I did pursue the problem with my hearing loss but it kind of felt like they thought I was a little crazy. However the tests did show loss which was sort of a two edge reaction. I felt better that I was validated but not that much better because I would be wearing hearing aids from then on. Life.
Have a very pleasant day @rosemarya. I was thrilled to see your reply.

Congratulations on your transplant anniversary! Did you do anything special to honor the day? I hope that is the first of many more.
You brought back memories when you said you gag at fast food commercials - I had forgotten that I used to feel that way, too. I still hate the smell of the fried foods at outdoor festivals. Whenever we go to an outdoor concert of activity, I pack my own lunch. I wonder if this is because gall bladder was removed along with my diseased liver. (?) I might put that on my list of questions for my transplant team next year when I have my annual visit!

Sandy, I hope that you have a good check-up. And I look forward to hearing from you afterwards.

Here are a couple of discussions that are also in the Transplant Support Group that I think you will enjoy. I invite you to share something from your own experience!
Do you have a photo 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/
Here are some ideas for celebrating a transplant anniversary. Do you have an idea to share?
- Happy "Transplantiversary"!
https://connect.mayoclinic.org/discussion/transplant-anniversary/

Hello. My liver transplant was 10-20-20. I can remember everything like it was yesterday. What your hubby is going thru is normal but the docs don't tell u that .drugs during surgery...drugs after surgery...go home take more drugs.. I could not eat for a long time had metal taste in mouth.then I got a mouth full of nasty soars tried protein shakes. Did not wk.i made ckn soup put in blender made it up drank it thru straw.it will get better but he needs nutrition do protein shakes put straw to side of mouth and far back and just drink...good luck

@jackie421blfdgurl, Hey, I'm happy to hear your voice! I hope that you are doing well and that you are enjoying some new adventures in your life.

I think that your suggestion to make chicken soup and put it in a blender so that you can drink it through a straw is a great idea! I think the warmth of the chicken soup would be a welcomed variation from the shakes. Thanks for sharing it.

@123sandy Hi and I had a Heart transplant, and my initial eating problem was food tasted lousy especially solid meats as you also mentioned. But it did not last a full year. I heard it was the prednisone that causes it are you by chance still on prednisone? I was lucky to be on it only for a couple of months and they were able to reduce it pretty quickly. Now I kind of wish I could be a little less of an appetite as I would like to get back to that weight area (LOL) but i was also very weak and had loss a lot of muscle mass, so all stages I guess have their challenges. So I would say something to your transplant team and maybe help with the loss of taste problem.