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

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@jackiez

Hi-I’m going to jump in on this discussion too. I’m just shy of one year post transplant-heart and lung. Hair loss with medical stress and Tacro. My transplant team recommended no oral biotin. Have tried thickening shampoos but my already baby fine hair is now sparse and like cotton candy-wispy. I was at Mayo Rochester and stopped by their cancer store and talked to them about wigs. I then went to my local wig boutique and ordered one. I call it my party hair and pop it on when I go out to shop, eat or meet friends. Solves a lot of frustration and even my husband and family can’t believe how normal it looks. Even looks like my ‘old’ hair.

Pedicures-I just go to get my nails painted and skip their work because of the potential for nicks and cuts. It’s less expensive too and I don’t think anyone else notices the difference.

I have begun eating out more as I am finishing up a 2 1/2 week vacation. I mostly eat at nice restaurants as I am hoping they are cleaner but I know this is not a guarantee. I occasionally order a salad but rarely. Hardly anything uncooked-veg, fruit, etc. in the beginning I would only eat deep fried foods because I figured people didn’t touch them after they were cooked. Fish, chicken, etc.
I am concerned about food safety and general illness that floats around in public. But after a year I am also feeling great and want to begin being ‘normal’ again and taking calculated small risks like meeting friends for lunch, traveling and living life to the fullest (as possible), because as we all know-life can change unexpectedly!

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Replies to "Hi-I’m going to jump in on this discussion too. I’m just shy of one year post..."

Wow, thank you @jackiez for jumping in! You shared lots of excellent ideas. I am thinking about researching a wig as a possible solution since I am not crazy about the idea of changing my medication away from Tacronlimis. I was surprised to hear that your transplant team did not like idea of oral Biotin. Did they share why they prefer that you don't take it? I currently take one every day so I am curious if I am doing something bad for the transplant.
I like your idea of just asking for a polish change. That's a nice safe alternative to a full manicure!
I totally understand your desire to engage with life again while trying to keep the risks minimized. It was nice to hear that you successfully enjoyed a wonderful long vacation with nice restaurants, etc. It gives me hope that I may join in the fun too! It's been a long isolated two years of being scared so "a nice restaurant on vacation" sounds like HEAVEN!! ❤ Thank you for sharing all your experiences and ideas Jackie!