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

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

@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)

@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?

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

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

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.

@muddlycrew, Thanks for the giggle. It is contagious, even via our online connection.

On a more serious note, from my experience as a recipient, I assure you that the current challenges are partly caused by your new medication routine. As time passes, you will gradually adjust to your new "normal". I would be happy to connect you with others who have shared their own adjustments and helpful tips, too. What is your biggest challenge?

I’m sure you are wiser and beautiful!!! Thanks for the giggle. I love humor as we deal with such a life changing event. I’m 5 months post transplant and as I deal with hair loss, memory challenges, unexplained weight gain, learning what I can and cannot ingest, etc., I welcome humor every step of the way. As Jimmy Buffet said, if we couldn’t laugh we would all go insane. Thanks for all the posts on this chain everyone!

I don’t really know how to post pic but believe me I’m old and ugly. Ha ha. 3 years transplant.

I am always amazed by the support that all of us give and receive by participating in these transplang support groups. I am also amazed at the way a conversation like this one began with discussion about hair loss - and - has evolved into encouragement in addition to hair loss after transplant.

I would like to invite you to share a photo of hope.
- 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/
.
What photo do you have that wouldn’t exist without your transplant?

@randallscott1, @texastxp, @kandidubrall, @chickytina, @crystalfaye, @brendag60