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I can't bring this up to anyone else because as a transplant patient, especially one as fortunate as I have been to receive a pre-emptive transplant from a nearly perfect match living donor (someone I didn't know but who had met me/known about my need due to the type of job I have). I do feel very fortunate that everything so far has been going well, my labs are good, I've been back to work full-time for 2.5 months and while I'm still very tired at the end of the day, I no longer have the symptoms that come from having a GFR of 9.

I take 2 myfortic 325mg twice a day and 4mg tacrolimus in the am, 4mg in the pm. My tacro level stays just above 5.2, exactly where they say they want it. My center doesn't use steroids.

Anyway, about 5 weeks ago, I suddenly noticed a lot of hair in the shower. I've always had very thick, curly hair my entire life, even at 50, so it wasn't necessarily that unusual to have hair falling out in the shower, but it just seemed different because I also noticed it didn't feel as thick. In the last 2 weeks, it's very noticeable that my hair is thinning, right at my part and my once thick bangs are wispy and thin. It's causing me tremendous distress because I'm already very self conscious about how my once slim body has an obvious pooch because my donor kidney is very large for my frame, but to lose my hair as a woman is very distressing. I work in a field where my appearance is important. Plus I've always been very critical of my own looks, it's a terrible combination but not something I've been able to overcome.

I'm so sad about my hair loss and terrified it is going to continue until there's none left. With permission, I've been taking 5000mc of biotin every day and folic acid. My nails look better than ever, but it seems to have no affect on my hair. I don't know what to do and like I said, I can't really talk to anyone because they will think I'm being ungrateful and that I should just be happy to be alive. I am grateful and happy to be alive but I'm also a middle-aged woman who doesn't want to be balding. 

 

Has anyone my age gone through this and honestly, did your hair ever come back, or is this just going to be permanent as long as I take the tacro? I'd imagine that all immunosuppressants cause this? No one prepared me for this side effect before the transplant. I feel like if I'd known, I could have prepared somehow or something. 

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  •  Whatever you do, don’t feel bad about being upset about losing your hair. I went through many days of tears about my hair until my husband begged me to stop whining. So I bought hairpieces that clip into your hair every few inches down and waited until my hair came back. I haven’t taken biotin although I probably will start but my hair has Come back about 2/3 in thickness and about 1/3 in length. I use Monat Hair products which has helped so very much. Hair means so much to women and men don’t understand so do what you can and give yourself time. The Tac does this and there’s little we can do about it, except wait. Try the hairclips, they go all the way across the back of your head between layers of hair and they look very natural if someone dyes them properly.  No one can tell and it feels great to be able to have a cool updo again and curl it if I want. I had my hair permed  and the hair pieces too,  and they look great. It will be all right, I promise.

  • I am 60 had liver transplant going on 3 years . One month after i lost a lot of thick hair started taking biotin and about 3 months later my hair started to recover.  My advice is to take the biotin. In the meanwhile go to beauty supply store and get a nice lacefront wig this eill help you until your hair grows back

  • I'm 7 months post op as well and have in the last month notice so much hair loss. I've always had long hair and have become super insecure with how thin it's been getting. I've started the 5000mcg biotin and it's kind of helping. I'm definitely hoping it levels out and at least lessens. Definitely open to any and whatever suggestions that might help. 

    • Biotin did wonders for me 5K a day.  It did take some time.  As meds get titrated it should also improve.  I was forced on some nlood clot drugs, etc. right after which are notorious.  Now on 2mg Tac BID and use the Biotin, hair has completely come back.

      I am 3 years post now.  

      My experience at least.

      • Blood clot drugs? Was that due to rising red blood cells? If you don't mind me asking?

        • Pre Tx my body was freaking out on the drugs - I was in hospital waiting for my Tx (luckily got it).  My clotting factors went wild - had more blood/plasma than I can recall.  Sometimes for days straight.

          The infection found my heart during recovery so I went on the Heart Tx list at about 8 months post Liver Tx.  Clotting was issue in my arms and legs so was on Coumadin, which really sucks.  During that process I had to take post chemo therapy Neupogen to refill my neutrophils and get my levels somewhat reasonable.

          Body hair never came back the same, which is fine, but hair on my head recovered well.

  • Are you having problems with the EBV virus ???

  • For what it's worth, I experience thinning as well after my transplant. In Year 2, I noticed some recovery or at least stabilization. I'm sure everyone is a little different but here's hoping.

  • Sorry to hear about the hair loss. I was transplanted three years ago and lost a lot of hair due to the impact of the surgery on the body and then the immunosuppressants thereafter. I have been taking 5,000mcg of biotin and now my nails and hair have come back nicely. Still a little thin but that could just be old age :-)  Anyway I am happy with how it's come back so I wouldn't stress to much yet. Good Luck! John

  • Thank you all for your supportive words and encouragement - it made me feel a ton better. I also went to a new hair salon that only uses Aveda products and got a nice haircut the other day and my hair looks beautiful again (or at least much better). 

    The adjustment is difficult but I feel so much better and am so thankful I had this opportunity to enjoy my life again. :>) 

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