Hair loss after transplant, probably Tacrolimus: Anyone change meds?

Fatigue and balance issues along with brain fog have been my biggest problems. I have ways of coping that have become just routine and I am very happy with my progress. I still have days where I just simply don’t feel well. Pretending to feel better than I do can be daunting. I’m not complaining, My liver failed after three years with cirrhosis suddenly. Never got on the transplant list and had only hours to live when the ambulance arrived. The MTs would barely speak to me when they saw my condition. I was in critical condition for 2 days when we got a donor liver. With the help of family and friends I have survived. My liver team has helped tremendously. I was recently introduced to this site and will enjoy reading about others’ journeys.

Yes hair loss, still on tact , at least I don’t have cancer any more

Randall, great update above. I too have fatigue and balance issues and brain fog. I think my brain fog is due to taking Gabapentin, 100mg in am and 200mg pm. I would be interested in the ways you cope routinely, so that you are happy with your progress, as I struggle some days with coping with fatigue, brain fog, and balance. I stumble during the day and will be joining a balance class which I hope helps. I am one year now with my new kidney. Thank you, BB

@randallscott1, You have had quite the experience. I'm so happy that you did receive a transplant and that you are doing well. 2 days of critical condition is a frightening way to arrive at the transplant hospital! Do you remember any of it? - or Would you rather not think about it? I was flown out of ICU in KY to Mayo Rochester, and have gaps in my memory of the events. I did get released from hospital and spent my waiting time as an outpatient until my organs became available.
Randall - Ever since my transplant, I discovered that my body wears out and I need to tell my husband, "I'm okay, but I need to take a nap and I'm not setting an alarm." In the early days I took a nap every day.
As the weeks and months passed, my naps became less often.
I think that the brain fog will go away. I don't think that you will have to cope with it forever. Be sure to tell your transplant team about anything that is out-of-the-ordinary for you. You know you the best, so listen to what it tells you.
Did you get your transplant at Mayo? Is that how you found us?

@blbird33, The balance class sounds interesting! You will have to share with us how it goes for you.

Happy 1 year transplant anniversary!!! Did you do anything special on that day? (My husband and I go out for dinner on my transplant anniversary)

I never thought of celebrating the anniversary! I will have to think about what I want to do to celebrate. I am so grateful for family, friends, and the hospital and all who helped me get this far in recovery and thriving. Blessings, BB

Here are some ideas that others have shared:
Happy "Transplantiversary"!

Worrying about having your hair thinning, or not being able to eat out when that was all you did, are all strange ways to react to a transplant. Your life has changed, it is not the way it once was and will never be. Now you have to take care of the body you have. You cannot live in the past, thinking that the transplant would make you able to do and be who you once were. That book has now closed or slammed shut. It is time to learn how to be the new you and take care of the body that you now have. Don't worry about the small things, wigs are fun to wear. I did it, 3 times, when I had my chemotherapy. Eating out is just a waste of time and money. Grocery stores sell frozen meals you just microwave. I find that most of these meals have too much fat, salt, and sugar in them, which we can't have. I buy frozen vegetables, that I like, cooked protein, no beef, put them in a microwave dish add some water and spices, no salt. Cook them 3-5 minutes and I have dinner. Everyone can do the same thing using other ingredients and they have their dinner. I like canned fruits rather than fresh, because I am unable to digest the skins, and the fruits in a glass jar can go into the refrigerator. You have to learn to live with your new body and take care of it or you may loose it. Good luck. mlmcg

I use a wild mint shampoo and conditioner that I order online.

I am having the same issue, it will be 2 years since my transplant in July of this year. I started taking Biotin last year as well as using an Rosemary , peppermint exilir on my natural hair. After a few months of using the exilir I have noticed some growth in the middle where it was getting thin but I also cut off all my dead, split ends which helped also.