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

It is scary! I mostly eat at home, but occasionally get drive thru, eat out at times when it is less busy like right at opening or mid afternoon. I never eat fresh fruit, salads or veggies out-food must be HOT. The pizza had always arrived very HOT, but it must have been handled by someone with unclean hands. I have groceries delivered to avoid busy stores. I rarely shop in a store anymore. But, I also think we cannot live completely isolated. I am home most of the time since I work here, too. Sometimes I just go for a ride to get out without going in anywhere! Right now I am longing for a pedicure, but nervous about going. Hopefully someday travel will be possible!

@jennifer0726 I can't believe how much we have in common! Everything you mention, is something that I think about too! I am dying to go for a manicure and pedicure. Pre-transplant I had weekly manicures on Saturday mornings and pedicures every month. Since my transplant, I have not returned to the salon. I received several calls from the shop promising that everything is clean and sterilized but I am afraid of the little cuts that can happen during a pedicure. I know you are correct that we eventually need to return back to life, but it's hard to decide how much risk I am willing to take for these small luxury items that I used to enjoy. Speaking about luxury, I used to enjoy a quarterly massage at a local resort Spa. It included the massage, and a complimentary lunch served around their beautiful pool. I am afraid to have a back massage because you lay on your stomach. I wouldn't want to have any pressure on my new kidney. I don't think I will go for a massage anytime soon. Please keep me posted if/when you go for your pedicure. I will keep you posted on my fistula surgery. Thank you so much for sharing your experiences with me. It sounds like we are going through the exact same thoughts. Maybe because we are both fairly new to all of this and transplanted during covid!
Thank you again for all your kindness and advice! ❤

Hi @hello1234 and @jennifer0726 I’m coming up on 3 years post bone marrow transplant and I’m right there with you, still taking precautions with not eating out…some of it is covid related, some related to infection avoidance with food borne bacteria. At some point, I do hope the Covid situation allows most of us to at least return to dining-out, inside a restaurant. I’m not at all comfortable taking that chance yet. But if Covid wasn’t around I’d definitely eat in a restaurant again. We all know our lists of things to avoid by now and to get everything hot. It’s a small price to pay for still being alive and well, right?

However, let me give you a little hint about your pedicure and manicures. Get your own tools so that they are used only for you. They can be sterilized at home. You don’t want the risk of contracting fungi, bacteria and blood-borne viruses like hepatitis B, hepatitis C or HIV. Not sure about the foot baths but most places now have plastic liners they change. With proper masking and a check with the salon for Covid protocol you should be safe enough to return for the mani-pedi. One of my transplant nurses said to never get the cuticles cut when having nails done. Always keep in mind it can be a potential source for contamination.
For a massage, you can always have the practitioner have you seated in a therapy chair. You’re upright but leaning forward a little, not lying on your stomach. Have you tried that?

Hi @loribmt 😊 It's awesome to hear from you! Thanks for jumping in!
I like your idea of buying my own manicure tools and sterilizing at home. Do you think dipping the tools in rubbing alcohol is a good idea for sterilizing or is there a better way?
One of the things that really concerned me about @jennifer0726 pizza situation is that it arrived very HOT but the heat was not enough to kill the norovirus. Do you think if we microwave the pizza (or any take out food) after it's delivered it will help in that situation or do you think that certain viruses are difficult to kill once it's on the food?
By the way, I like your idea of sitting in massage chair to keep away from lying on my stomach (and new kidney!).
You are correct that all of these little challenges are definitely worth any sacrifice to protect our "miracles".
Thank you Lori for sharing all of your excellent tips on staying safe. We all know the basics, but sometimes it's helpful to hear exactly what to avoid (like cutting cuticles, etc). Thank you!! 💗

Thank you, @loribmt for your tips! My salon autoclave’s their tools-but I see them re-use the scrub pad so it still makes me cautious. The owner knows I am post transplant- other workers might not. I have thought of going to a spa where they do not use tools-just the foot massage would be nice. By the way, I have been down the BMT road with one of my sons in 2000. I am very happy you are doing so well!
@hello1234 the Norovirus could have been spread on the box, or when cut or put in the box. It could happen anywhere-picking up Meds at drive up pharmacy for an extremely contagious bug. I haven’t ordered from there since it happened-just can’t. I certainly will wash my hands after touching packaging or boxes. It could have even been from a grocery delivery in handling. The day after my son was sick-several co-workers were sick, and families at our church, had it during that time. (I haven’t attended in person since prior to pandemic-be he has) It was everywhere in the community we found out after.
I was a germaphobe who has carried hand sanitizer for 25+ years-long before it became socially acceptable! We just do the best we can do to stay healthy.

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!

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!

Heart transplant here two years ago. Male also so no wig and it was thinning ever so slightly before, I am just rolling with it. I go to Great Clips and get a #2 buzz every four weeks and on a rather self-centered basis it looks good, Combine that with the snow white very closely trimmed beard and I am literally a new man. Though she-who-must-be-obeyed enjoys the look of the facial hair, the feel is not her favorite. It is stubby and pointy...kind of like me.
Best always,
s!

Good morning @scottj and Congratulations on your two year anniversary! It sounds like you are doing wonderfully and back to enjoying life. Your buzz cut and snowy white "stubby" beard is a very handsome look and definitely on trend for men. Not sure I could pull it off (giggle).
Thank you for joining in Scott. Your positive energy comes through your post! Obviously, you are back at the barbershop. Have you also started to eat out or do some public activities? I am not sure where in the country you are located, but do you feel comfortable resuming some of your normal social activities? (I assume you are on Cellcept and Tacronlimis too).
Thanks again for joining in the discussion!

@hello1234 . Many thanks for the congrats.
We have started to venture out for late lunches and early dinners at outdoor locations here in the Sonoran Desert/Tucson. That said we do mask everywhere. I am not totally comfortable returning to activity but upon advice from Mayo in response to my query about attending my daughter's wedding, "What is the point of being alive if you are not living."

The wedding was a successful small outdoor affair. Everyone was vaccinated per demand of my daughter. The real loss for me due to tacrolimus is cartilage in both hips. Heading to Mayo on April 11 to replace the right hip and hopefully address the left hip later this summer. Still I am averaging 40,000 sometimes painful steps per day.
Best always,
s!