Tuesday, 21 February 2012

Hair lose

Ok so im going to talk about my hair.

Its fallen out, alot, at first I got clip in extentions and they are ok but a bit of a pain to put in and out so i went for weft tape in ones, possibly the only ones that owuldnt pull out my hair anymore. Well they just didn't hold in my hair and three days later there practically gone. I have  now decided that im going to go back to the clippins.

Its cost me a fair bit of money to say the least and yesterday I was a nervous reck about it all. I contemplated chopping it all off and going short like i used to but the thought devestated me. I have spent 2years trying to grow it only to cut  it off because its so thin. Dont get me wrong I liked it short, but I want to keep my long hair now. I also want to say my hair dresses has been a star and tryed to help me as much as possible.

I know you probably think Im over exagerating. Im not Its getting bad, really bad. Im worried I may even end up bold. I rung my mum to talk to her yesterday and ended up in hysterics on the phone. She can round to comfort me but every time I thought about it I ended up in a huge fit of tears.

Devestated isn't the word. Its all because of my immuno suppresant Tacrolimus. Now in the grand scheme of things I know its nothing. My life for my hair. But It is. Its devestating for any women to lose there hair. Mine is what I always described as my crowning glorie. I love my hair, ever time I empty the plug whole is the only time I really see it anymore.

My mum said if it gets any worse Im going to have to go to someone maybe about a wig as its really tearing into me and upsetting me. I have that little hair that I know most of the time you will see the clips, but im just going to have to try and blend them as much as I can.

I did thing about changing to ciclosporin but I don't think I would deal well with waxing my face. As that causes extra hair growth. I did ask the doctors and they said Its just a side affect and that it will get better but for now I have to watch my hair go down the drain. Litrally.

I will keep you up to date.


  1. Its probably no help, but I lost most of mine too after transplant. They said it could be the prograf, but also the stress of being so unwell. I would guess that I lost about 80% of mine. But it did come back!! And so differnt from what I had before. I always had poker straight light hair and when it came back, it came through dark, thick and curly. But it came quick. The best thing I did was to go short. Although I liked having longer hair, when it was short it was not as noticable and I was able to regrow it long from then on.

    That being said, my mum lost hers last summer to chemo. She has a wig and you really cant tell the differnce. Plus its so quick to style, she literally just gives it a shake and pulls it on. And the people in the shop were wonderful. You can try loads on and see how you feel. She used it all last summer, but now she is starting to get her own hair back, it makes her head too warm.

    It is a small price to pay, as you say, but it can also be the straw that breaks the camels back so to speak. Hair is such a huge part of you, that it is perfectly ok to feel this way about it.

  2. kirstie, I hope you don't lose anymore hair.

    Also I hope you don't have many more side effects.

    Harry W

  3. I understand exactly want you mean about being upset over hair and thinking "it's just HAIR". I mean im not going through what you are, with the drugs causing it, mines my own fault, but i can relate. I'm a hairdresser and i love playing around with my hair, I love having funky colour and bleaching it and then dying it until it gets so dark i have to bleach it again. But i still love my hair. I went to have it cut once by a fully qualified hairdresser who was on a course and she cut so much off, I cried and know i will only let my hairdressing friends who know i will kill them if the cut too much off cut my hair.

    I understand money is tight for you but if you can afford it try regaine or alpecine shampoo as these stimulate hair growth and I know theyre aimed at men but they should work just as well for you. xxx

  4. Kirstie - it really DOES get better. 3-6 months post-transplant it's awful but your hair does grow back and it will thicken again. Give it a couple of months and you will see an improvement honest :)
    But it's crap whilst it lasts :(

  5. Kirstie, I think you are the greatest, you are so brave and inspiring. I am so sorry for you but as other posts say - you will get it back. I would do the opposite to what you are doing and shave it off ! So many people look to you for hope and inspiration that if you could face being bald it would benefit many, many people. You would be attractive and feminine without hair-believe me,I hope your hair grows back quickly and you feel a lot better soon.

  6. Hi Kristie,

    I just discovered your blog and you really do give an insight on how CF patients feel and what they go through. I applying to go to school to be a nurse and your blog is very inspiring to me. As a 24 yr old female, I can understand how losing hair can feel. And I feel sorry for your but at the same time, after reading all your posts, I am so happy that you are still alive. Also, I hope that one day you will come to know Jesus. You can think of Him as your friend and talk to him whenever you want to. You can also send emails to me, I will be glad to be your friend.


  7. There's a few products on the market that help with regrowth. Im currently using Nioxin. Its meant for thinning hair and is fairly reasonable. I think i pay 15.00 US a bottle and even though my hairloss is due to Gastric Bypass I can relate to you loosing your hair. It sucks!!! I actually took the drain stopper out of my shower so I didnt have to see how much I was loosing. Good luck with everything you truly are such an inspiration to all!!!

  8. Hi Kirstie, Ive been following your blog for a while in Australia. I was in England whilst my mum had a kidney transplant when your tv show was on. You inspired me to do more awareness raising. We have just come to the end of Donate Life week here in Aus and this drama below about a lung transplant has just shown ABC1. Hopefully itll get picked up in other countries or shown more widely here in Aus. I have requested that the channel picks up "love on the transplant list" and shows it over here. I know the Aussies will take to you just as much as the brits have :)
    Stay well,

  9. Hi Kirstie,
    I have just stumbled across your blog and BBC doco from over here in Australia. It had me in tears. You are an amazing woman with who kept fighting with such grace and dignity. Your husband also seems to be such an amazing and sweet man. You can tell you are both so in love. I hope the hair thing sorts itself out, it must be so upsetting for you.
    Take care,

  10. Kirstie,

    I saw your story on a Good Morning America Facebook post. It was very inspiring.

    I help publish a magazine for The American Hair Loss Council, hair replacement industry publication. I know that there are a multitude of solutions for your hair loss. Odd how we are 'attached' our hair :) There are a number of organizations that help people with medical hair loss. We have a few international members. If you like I can try to find one in your area.


  11. i think you should just go get a wig right now. why not! wigs are fun. you can have a good time shopping for them and trying them all on, and styling them however you'd like. it must be awful to feel like you'll be forced to wear one, but i still think you could have a good time giving them a try. i hope it works out for you.

  12. Hi Kirstie
    My son sent me your web site and the link to your video. I was deeply touched by your story. I wanted to share with you that I also suffer from hair loss (Alopecia Areata). I know your hair loss is secondary to your other health issues but nevertheless, it is still an emotional event. After I lost my own hair 11 years ago, I began to design scarves for women with medical hair loss. Please visit my web site www.4women.com to learn more about me and my company. My scarves are called the beaubeau and they are an extremely comfortable and fashionable alternative to wearing a wig. I would like to send you one of my scarves (FREE) so that you can feel positive and good about yourself during this time. Please send me your address and refer to the measuring video on my web site for your correct size. You can email me at susan@4women.com. I wish you the best of luck going forward.
    President, www.4women.com

  13. Hi Kirstie, I know exactly what you mean. I am 14 years post transplant for CF and I too have lost a lot of hair. The good news is that it reached a point and stopped. I haven't lost anymore after the initial fall out. The bad news is that it has not grown back despite great health and trying all kinds of products. I went short and use thickening products and it works for me. I used to have long hair, but I am enjoying the ease of short hair. It's an awful side effect to deal with.

  14. Thanks everyone. i think im getting there with the hair. i have clip in extentions and a few hair piece things. feeling a bit more confident apart from when a piece came out during gymnastics lol felt very silly.

  15. You probably spent a lot of money on the weft, seeing you went back to clips just wanted to let you know you can buy just the clips and stitch them to your weft and then you can still use it. Just try to not wear them all the time as they cause stress/rub points on ur head and cause more hair loss.

    When my baby brother went through chemo he was so scared to loose his hair so i got him the clip in extensions but they just pulled out the hair faster. In the end we had a head shaving party, my dad, and my youngest brother (5) and a few uncles shaved their heads so we all looked the same.

    My Grandma is loosing her hair and I got her a lace front wig and it looks awesome on her.

    It sucks when your a girl and you have hair loss, ya feel like the whole world is looking at you. I have psoriasis and I feel like a troll when I go to the gym and the old alligator skin is showing make me feel like im about 2cm tall

  16. Hi there,simply become alart to your blog through google better post , keep it up!love to read.

  17. Hi kirsty, I had a double lung transplant 3 weeks ago, and am also on Tacrolimus... I know what you mean that you feel bad for worrying about such a "trivial" thing after all you have been through, but I'm really worried that this will happen too x doesn't mean we are any less grateful!!!
    I also want to say a huge thankyou as I have been following your story, and you have helped me have the courage on my journey x