sheri446 years ago

1 year on and I'm still losing hair. Not as much as I was but still a lot. Scares me to brush or wash it at times. It does settle though 👍🏻 xx

nickiwj in reply to sheri446 years ago

It's scary isn't it. When I wash it, it comes out as wide as your little finger from the root!!! I hope it settles down as I too hate to even brush my hair at the moment.

I then always feel pants for moaning about it as it leads me to think of my doner angel and my precious gift of my new liver from that person.

I can't believe your transplant was a year ago!!!

Nicki xxxxx

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Gaynorlowson in reply to nickiwj6 years ago

Mines not falling out but it is so frizzy and out of condition I'm thinking of getting a wig but have no idea where to go to get a decent one.

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nickiwj in reply to Gaynorlowson6 years ago

Im guessing if your hair is out of condition it could also be related to the medication and probably body hormones settling down. X

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Gaynorlowson in reply to nickiwj6 years ago

Hope so lol I also ache everywhere , like you I'm not complaining but just saying 😊

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Hidden in reply to Gaynorlowson6 years ago

Look on YouTube for a vlogger called "SugarPuffandFluff". She has done a whole series on buying wigs and compares them for style and money and also where to buy them. It is a great series, which I have watched, even though I'm not going to buy a wig (yet!!) There are other vloggers that she mentions, but she has only bought recently and takes you through her newbie wig journey. I have to say they look amazing.

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nickiwj in reply to Hidden6 years ago

Thank you for the info 👍🏻

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Gaynorlowson in reply to Hidden6 years ago

Thanks I'll take a look 🙂

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meme7 in reply to Hidden5 years ago

Thanks for the info....going to check it out.

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sheri44 in reply to nickiwj6 years ago

I know a year already. Honestly hunny sometimes I'm washing it and there's a handful or 2 looking at me from the root down. I've started letting it dry by itself now as I use straightners too feel like I don't wanna abuse it anymore. It's also frizzy so I have to use products to help it. Mad how our bodies change. Xxxx

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LAJ1236 years ago

nicki,

Interesting hair related experience.

When I was really ill with cirrhosis ( end stage ) my body hair disappeared. Apparently this is a normal symptom due to the hormones being affected.

Post transplant the hair came back almost immediately, so much so that my scar is far less visible underneath my rejuvenated chest and tummy hair.

Jim

sheri44 in reply to LAJ1236 years ago

I'm female but ive found since my transplant I have no hair under my armpits. It doesn't grow there anymore for some strange reason 🤔🤔

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Denise15 in reply to sheri446 years ago

Me to - no underarm hair ,little leg hair but chin, I'm female, is coming on a treat !!!!!!!

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sheri44 in reply to Denise156 years ago

I hear you. I get it where I don't need it. I know the tac can do this. Dunno if anything can be done about it. I think I will ask 👍

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Denise15 in reply to sheri446 years ago

Thanks for your reply if you find out anything from your consultant let us know xx

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sheri44 in reply to Denise156 years ago

of course I will xx

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Ftydy in reply to sheri444 years ago

Same here after 3 months of liver transplant and also losing hair

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jojokarak6 years ago

Hi nikki I sent you a msg on fb a week or so ago. So nice to hear from you I was wondering how you was x. And as for the hair it's only the last month or so mine has stopped falling out. I am starting to get the fullness and condition back, it's also growing faster, not sure if you have had the same but also my nails were so weak and and always breaking and splitting but they are now improving. It doesn't matter what you use to wash your hair with and more about what you eat vitamins and minerals always improve internally and whilst it is falling out don't wash as much and if you have long hair as I did get it chopped off to a bob 😁 I really hope your recovery going well otherwise xx

nickiwj6 years ago

Hi hun. Great to hear from you 🙋🏻 I hope you have been recovering well?

My nails were strong and grew really long even in hospital. It's my hair though. I so hope it will soon stop falling out. I don't have very thick hair to start with so a bob won't work. I'm not moaning though - I'm here and I'm loving life again now I'm feeling stronger and my mobile. Able to go on much longer walks. Can go up and down the stairs without it feeling like I have run a marathon!

Stay well my lovely xx

Emmabskin6 years ago

I haven't had a transplant. I had a really heavy duty treatment for Hep C so I'm putting it down to that. My hairdresser used to moan that it was difficult to fit all my hair in the basin to rinse it now it's really thin. I've had a few inches cut off and I keep it tied back. I use that caffeine shampoo from Germany, hard to say yet if it's helping. I also take some tablets for skin, hair and nails. As much fresh fruit and veg as I can get and , of course, vitamin B complex. I'll let you know how it goes, I think it's stopped coming out quite so much but that could be me hoping. xxx

Emmabskin in reply to Emmabskin2 years ago

Ok. Four years on and great improvement. The caffeine shampoo is really good but you have to use a really good conditioners with it. I'm sure Good diet comes in too. Hope you are happy and that your health has improved . Love and strength coming your way. 🤗😚

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Dudewheresmyliver16 years ago

My hair was basically non existent before Christmas 2016.I had a huge stay in hospital with alsorts of things failing.

Eventually when I got out I got my nxt door neighbour to no1 my hair off.After the shock of a full bald head I got used to it.It is only hair.It's not what defines us.

It is now growing bk thicker than it has been in years.

Don't be scared it's you who is the beautiful one not your DO!

meme75 years ago

Hi Nicki, I am currently at 3 1/2 months post transplant. I feel so much better now. But yes my hair is falling out very fast. Its already about 65 % less hair than before. I cannot touch it that it does not fall out. Every day on my clothes, pillow and just everywhere. I am 64 and always have colored my grey. Now however, I cannot. But my hair is not really growing any longer so who cares about grey. I wish I had some advise. I agree totally about being alive and feeling well is all that really matters. I love life and just wish that it was easier to live as a woman with little or no hair. Men can be bald and it is still ok. Women not so much. I used to have thick hair. But I also used to have liver cancer. I much prefer less hair than cancer in my body. Its good to just talk about it anyway. Thanks and I wish you the best with your life with your new liver.

Hope-feb3-2017 in reply to meme75 years ago

Hi Meme7,

I am just past my one year post transplant. The exact same thing happened to me. It was my GP that really explained that your body has gone through such a traumatic event (you indicated that you had cancer as well) and I was so sick from my liver that I also had kidney failure and thankfully I received my gift of life liver in time. GP said like any major event within your body it will react differently - like some women lose their hair after child birth (I did not). Along with your medication this will happen and I guess it does not happen to everyone. It did to me. It came out in clumps, all over the house, my pillow was covered in hair and my clothes. I got so worried that so much came out that I was going to go bald. Yes, it's different for women. We're not saying 'oh my I need my hair' it's more like you are loosing a part of you. That's how I felt every time I had to clean up my hair or look at my self in the mirror pieces of me were being lost. However, I'm here to tell you it will STOP. For me at 4 1/2 months it stopped so for about a month it fell out. I went to the hair salon and my wonder stylist said there is always something you can do!!!! She cut my hair into a short bob -coloured it dark (to camouflage the scalp) and a few blond pieces in the front and what they call peek a boo -pieces underneath your hair to peak out. Did I love it NO but I had to go to my daughters graduation - I was so thankful to be alive to be there I would do anything!!!! There are tricks you can do -go to the salon and talk about it with them - they are very helpful. They have this very light powder in all colour shades to sprinkle on your scalp to camaflauge the skin and sprays as well. Sorry to ramble on. But I was so lost and afraid - I don't want you to be. When mine started to grow back that was an interesting experience. It was growing all over very tiny and all at the same time. At one year it is all back and CURLY - my whole life I have had pin straight hair. Just know soon it will stop. You should talk about it -this is happening to you I hope I have given you some hope! Getting through your first year is ups and downs and all kinds of stuff happens. You will get through with flying colours. Talk it through and you and everyone on here are not alone. We are all blessed to have found this very safe place I'm here to talk anytime take care x

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meme7 in reply to Hope-feb3-20175 years ago

Thank you Hope. I am trying to not let it affect me too much. Wear a hat when I can. I am so grateful to be feeling well. Hair is a very small part of my life. It is annoying to find the hair everywhere. Sometimes it even falls out when I am eating and that is GROSS. Oh well it is what it is. Did you have issues with swelling in legs and feet. That is happening now and it is also troublesome. I figure it is mostly medication related and some day hopefully my body will get used to the Tacrolimus. Next month my hospital celebrates all Transplants and hosts a big day with food and fun for all families. They have asked me to tell my story. That will be exciting and nerve bending. Congratulations on your successful transplant and your 1 year marker. That is a very big deal! Much to be grateful for. Bless you and I wish only the best for you. Take care xx

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Hope-feb3-2017 in reply to meme75 years ago

Thank you meme and I wish only the best for you as well! I think that it will be very good for you to tell your story! After you will feel amazing and much stronger. Honestly at my 2 month mark my doctor asked me to do a video with her - this video will be viewed to all the new doctors going through the program. The hospital is trying to get the doctors the patients perspective and point of views earlier in their study program. I was very nervous as I was only 2 months post but I had a lot to say about my experience and proud to do so. I know exactly what you mean about hair in your food! I would try my best to cook a meal for my family only for us to sit down to eat and my daughter would find a hair in her food! GROSS - she simply said don't worry mom -I would rather your hair than not have you here at all! I cried! So emotional. I had a lot of swelling in legs and ankles and feet - my swelling went down after 2 months - you maybe need a bit more time. As we read and experience everyone heals different. I was taking Tacrolimus and myfotec and prednisone and over time with blood work indicating ok my medication would change sometimes lower and sometimes increase 1st was to slowly decrease off prednisone then decrease off myfotec and lower tracrolimus which I am now only taking

For me the medication has it's fair share of side effects and sleepless nights My routine is to take medicine in the morning and again at night if you have any questions regarding side effects I can tell you what I experienced

You are 3 1/2 months post transplant congratulations! I wish the very best for you with your new life and liver!!! Lots of new experiences to enjoy, please enjoy every minute. Take best care and I'm here for you. Take care x

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meme7 in reply to Hope-feb3-20175 years ago

Hi hope. Love hearing from you. I went yesterday and cut my hair really short all over. It was so thin and my long bob looked bad and was near to impossible to style due to thinness. But I think I am really going to like the short do. I am still swelling every day. Not sure why? I wear compression stockings to help. I am also getting some hot flashes periodically. Need to keep a journal when stuff happens to keep it all straight. Have not done that yet. My attitude is the best I have ever had my whole life. I am happier with life and I smile all the time. I love the wonderful people I have met. I guess I transmit happiness to others I mean complete strangers because now I notice every smile and I see so many smiles some days. On the 6th of April I will be at 4 mos. post. God bless you and your family. How old is your little girl? I have 7 grand children. We live on the same property but in a small separate house from 2 of them. Girl 5 and and boy 4. So, they are in my life on a daily basis. Wonderful for us and they love it too. Stay well and please feel free to keep in touch. xx

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Hope-feb3-2017 in reply to meme75 years ago

Thank you so much meme!!!! I feel the same way you do. I am always positive and yes people are also drawn to me. One day I will write my whole story... I became sick nov'16 and ended up having liver and kidney failure and my gift of life came on February 3 2017. I really really was close to not making it within days. I was completely bedridden in ICU. My HE was very, very bad. My only daughter was 13 watching her mother suffer, in a coma etc.. My husband was by my side the entire time he slept at the hospital with me - making decisions medical for me as I could not. Thankfully my daughter could stay with family who loves her so much. My daughter just turned 15 on March 24 and I turned 51 on March 25 th. I look at life very differently now.

Just to let you know I also got hot flashes.... I think it's your body getting use to the meds. Yes,yes keep a journal - very helpful for your visits to the transplant team. Write everything down. Also later it will be good for you to look back on. I feel very great full as I have not had any type of rejection issues. I know it is common and down the road I may. All I know is to deal with it as soon as possible.

Please keep in touch and any questions you have if I can answer on my experience I will be happy to. I wish you a healthy recovery so happy you have family around you!!!! Take care x

I believe this with all my heart:.

Let hope fly

Hope is the thing with feathers

That perches in the soul

And sings the tune without the words

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meme7 in reply to Hope-feb3-20175 years ago

beautiful....Let hope fly. I am writing this down. So, you had a kidney transplant and a liver transplant? Please write your story. I will read it. You had a miracle. Its a beautiful thing. I am very pleased to know this. Take care. xx

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Hope-feb3-2017 in reply to meme75 years ago

Sorry I did not explain correctly.... I had kidney failure and they put me on dialysis which allowed me to have my liver transplant. My kidneys are functioning now however the Tacrolimus is very abrasive on my kidneys so I have to watch them very closely-along with of course my liver. I believe we all have had a miracle and it's pretty amazing how science has given us a second chance. It will be wonderful what the future holds.... All kinds of medical trials are going on everywhere. Have a lovely day! Please keep in touch x

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meme75 years ago

Hi Nicki, Yes I do know that Tacrolimus is very hard on Kidneys. At my 3 mos. point they tried to take me off the Tac and put me on Everolimus and Mycophenolic Acid (aka Myfortic). I became very upset and had to remind them that about 1 week post transplant I got severe diarrhea. It was awful and lasted for about a week. I was taking Tacrolimus and Myfortic at this time took Myfortic away and put me on Sirolimus and no more diarrhea. They decided I could stay on Tacrolimus and Sirolimus. But they were starting to change other recipients when they reached 3 months post mark and not keep them on long term Tacrolimus because of the kidney damage they were seeing in recipients. Have they ever tried taking you off Tacrolimus and trying another drug similar to what they are doing at my Liver Clinic? I guess I will stay on Tacrolimus because my system did not do well on Myfortic. I hope you do fine and kidneys stay good. Mine are always checked every 2 weeks and I am doing good. Have a wonderful weekend and Easter. We are getting a new puppy on Saturday. I am excited but know the puppy stage is difficult and work. His name is Rufus and we already picked him out a few weeks ago. He is a Golden Doodle. He is currently 10 weeks old. Stay well. Keep in touch. xx

Hope-feb3-2017 in reply to meme75 years ago

Hi meme, sounds so wonderful that you are getting a Golden Doodle and what a cute name. My daughter wants to get a dog -we will see in the future. As for me and the Tacrolimus - from day 1 post transplant they have kept me on it along with Myfortic and prednisone. Now I am only on a very small does of Tacrolimus morning and night. I guess every person is different and different meds react very differently to your metabolism . Now, we are monitoring my kidneys which now are starting to look better in the blood work since I have reduced to low dose Tracrolimus. Also my liver is tolerating the low dose. All blood work is coming back very well. Soooo happy. I've been working with my GP on checking in on vitamin B12 - just found out I was very very low so I have had a B12 shot and taking daily B12 supplements and this has greatly improved my energy levels. It's good having your GP working along side the transplant team.

I found Myfortic gave me muscle cramps and joint pain really bad. But over time we decreased and eventually off and all gone.

Sounds like you are going to have a lovely Easter Weekend - ENJOY every minute!!!! We are spending with family as well. Keep well and keep the HOPE high. Take care my friend X

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nickiwj5 years ago

Hi everyone,

I posted this a year ago and it’s great to hear from people. Please stay positive if your hair is still falling out. Mine stopped after 8 months. At that point, I was balding in places. Don’t be put off by your consultant saying it will stop and will grow back as I was at that point of giving up.

I guess my body and hormones calmed down and slowly it began growing “whispy” at first but after 15 months since my transplant, it’s nearly back to full health. I keep my hair shorter while it’s thickening up so I advise regular trims and haircuts, a good shampoo and conditioner and try not to use hairdryer, towel dry and then a good leave in conditioner. Xxx