Liver
Hair loss post op living donor liver tranaplant
I first like to say that I am very thankful to the unknown living donor who saved me when she donated part of her liver, she will forever be my angel.
About 2.5 weeks ago my hair started falling out, my transplant was February 12, 2024. My brush would be full of hair and now it is so thin that I don’t know what to do. I contacted my transplant coordinator and she contacted the nurse practitioner so I could be taken off of the Tacrolimus. I had the labs done and the results were available on Wednesday, I contacted the coordinator and still have not heard anything back from her. They were checking to make sure it was safe to put me on Zortress. I know you are suppose to decrease your stress to help with the hair loss but I feel more stressed out now. My family tells me you’re alive and I truly appreciate the donor’s gift of life to me, the surgeon’s expertise, and all of the healthcare professionals care, I just don’t know what to do. Can someone please help.
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Transplant Patient
Oh friend, hair loss was huge for me. I remember when my hair started falling out post transplant (it wasn't immediate, which confused me too) and how much I struggled. It felt like that was the straw that broke the camel's back in my ability to cope. It can be so hard, too, when people are telling you to just be grateful because you're alive. Because yes, of course, AND... and for me losing my hair felt like the last bit of control, and autonomy I had left. It's so much more than just hair.
I know others did do treatments to help combat some of the hair loss, and I'm hoping they can share their experiences. I never did, partly because my case was so insane and I didn't want to add any more newness to an already unpredictable situation. I did do things like switch up my hair care routine, focus on nutrition, all the things they tell you to do. And I can say my hair has grown back now and I love it, but that being said I'm also 4 years out now and it did take a fair bit of time for my hair to regrow. I did extensions and wigs for a really long time - I don't know if that's an option for you but it was really helpful for me.
I hope your coordinator will have some helpful guidelines for you. I also hope you're able to find support through this community. And also congratulations on your transplant. It's a long road with a lot of ups and downs but you don't have to navigate it alone.
Thank you AliEm for sharing, it’s just hard not knowing the cause of the situation. I only take a small dose of Tacrolimus 1mg twice a day along with Cellcept or if it’s the stress of the surgery, do I wait it out or switch meds. Knowing there really isn’t a correct answer makes it so much more stressful.
I am adjusting my diet, I changed my hair care routine, doing scalp massage and I’m taking Biotin. I ordered headbands to cover the hair loss. I’m looking into toppers and wigs but I don’t know if I would tolerate them. I’ve read that they can be itchy, is this true. Are wigs made of human hair better than synthetic ones? I would greatly appreciate any advice on wearing a wig.
Transplant Patient
I can tell you what I did! It's so hard to know because especially in the beginning there is SO much happening. Stress of the surgery, and everything that just happened can definitely be a factor. It's an inherently traumatic thing and your sweet body is trying to process it the best way it knows how.
I personally did some of both when it comes to wigs, but I'm also one who has historically done wild things with my hair and didn't care about it looking "natural" too much. There are some higher quality synthetic wigs, which are definitely cheaper than human hair wigs if that's a concern for you, and there are some pretty natural looking ones too. Your only options aren't the halloween costume ones! If anyone ever figured out I was wearing a wig, no one called me on it, and I actually got complimented on my "hair" so much when I wore wigs! I got a wig cap to wear under my wigs, and just tucked what hair I had left under that rather than trying to blend it all, and then once it was long enough I blended with extensions. I found a wig cap, especially one with a built in wig grip, helped a ton with comfort. I also live where it's really cold, so I didn't mind the extra heat, but depending on where you live it might be a possibility that your head would get hot.
Hi Kimberlee, My LTP team said. a lot is from the surgery and the anesthesia. My hair fell out to. I am now 3.5 my hair is finally looking and feeling better. The immunosuppressants don’t help that’s for sure. Your body has been thru a lot it’s hard but be patient. My hair dresser put me on a shampoo conditioner called ANEW, it really has helped.
Congratulations on your LTP, you will find lots of people that can help you on this site. 💚😊
Thank you for providing information and support. It’s good to know that my hair can grow back but it may take some time. I am looking into self help and I will keep positive thoughts about this. I know everyday is not going to be great but I will remember the final outcome from the transplant, I am alive and was very lucky for this selfless act of kindness.
I had my living donor transplant on 2/13/24 ! I am doing ok but have noticed some thinning hair. I am following this topic closely. Nice to meet you.
TammyReneeD Congratulations on your TP, so glad you are doing well. You will not meet a nicer group folks to help you a long your TP journey. I am 3.5 yrs. LTP.
I've had on-and-off issues with hair loss throughout the 18 years of having a kidney transplant. Plus having Lupus doesn't help. It sounds like you are doing a lot of the right things. Your body has gone through so much.
As grateful as I am for this life-saving organ I always say I have to look good to feel good. What has worked for me over the years is I use a rosemary hair oil on my scalp once a week. It helps strengthen my hair. The last year I have been using a silk bonnet at night. Game changer! My hair stopped breaking off so much and I don't get tangles so less brushing too.
I hope this helps!
I am going to try your suggestions I appreciate the feedback. I know I’m grateful but I agree with you I have to look good to feel good.
Kimberlee, I think we all feel that way. So no judgement zone here.🌼💚
I just joined this site today, and I'm so greatful I stumbled on it while looking for answers as to why my hair is thinning. I too had my (second) TP on February 12th! :-)
My first transplant was 33 and a half years ago from my sister. This new one is from my brother (yes, I know how lucky I am!).
It's interesting to see how much has changed, and how much more challenging it's been this second time around. Of course, I was much younger back then. Twenty-six years old the first time, 59 (60 in June) this time.
I noticed last week that I had a LOT more hair on my sweaters/tops than normal. I had a feeling it was due to the Tacrolimus, and after googling it, I was right. I called the transplant nurse, and she said the docs will discuss on Friday what my options could be going forward.
Two questions for you all:
Again, thanks for this discussion - it's greatly appreciated!
Transplant Patient
Welcome friend, I'm so glad you're here!
I'm assuming the infusion you're talking about is Belatacept? We have a few people in this community who are on it, hoping they can chime in and share their experiences. I think there's separate discussions in the forum regarding this, too, if you want to keyword search the forum itself.
As far as hair goes, I know some people have done biotin supplements specifically. I personally focused on diet, and then I switched out all my haircare products. I did no 'poo for a while immediately post transplant, and now just use a more natural, customized shampoo, and rosemary, which was mentioned above.
Thanks for sharing the name Belatacept. I did look it up and will have follow-up questions for the transplant doc when I see him next. I will also look up that discussion. I'm definitely going to try the rosemary and will look into shampoo products that will help.
Thanks for your response and for making me feel welcome. :-)
I'm on Belatacept. DM me if you have any questions. And welcome to the group!
I'm on Belatacept. DM me if you have any questions. And welcome to the group!
Hi Jeanmarie - I think I DM'ed you, but I don't know if it went through. Did you receive a message from me? If not, I can try to resend it. Thanks! :-)
I got it. I messaged you back ☺️
Heres what helped me.
long term-
short term-
i've beening following this since i left my TCU last fall. i have just started feeling better about the state of my hair. So, patience is important too!
Good luck! It WILL grow back-this isn't a forever thing. 😊
if you'd like any specific brand/product recommendations feel free to DM me.
I too experienced hair loss for about a year but my hairdresser put a conditioner on my hair when I went to her and it really helped. I have short hair and I still have a bald spot about my right ear and my doctors seem to think it’s where I was so sick prior to my transplant. The rest of my hair is really thick now. Hope yours will return.
Thanks for the feedback, everyone! I'd say I've lost about a third of my hair (it's very fine, but I have a lot of it). My docs just switched my meds as of today: Tac from 9 to 4 mg a day; Cellcept from 8 pills a day to 4 a day; and they started me on Sirolimus. The goal is to get me off the Tac and switch to the Sirolimus. I was on it for years with my first transplant and did great with it. I'm also hoping the incredible joint/muscle pain I'm experiencing will diminish as well. Fingers crossed! :-)