Sarcoidosis messed with the wrong woman

Sarcoidosis messed with the wrong woman

After going through weeks of testing,I discovered this week that I am not suitable for a lung transplant. Because I have the sarcoidosis in my liver too,the transplant team at Newcastle decided after looking closely at my case,that my liver wouldn't cope with the transplant and they're 100% certain I wouldn't survive.I have sarcoidosis in my lungs,lymph nodes,liver eyes and skin,and i have an inoperable diseased gallbladder,but apart from that im fine bahahaha 😂. But its not a big deal,I either decide to give in now, and sit back and wait to die,or I decide to get up,dust myself off and fight back, and this wee wummin ain't giving up lol.None of us know how long we'll have,I'm in the fortunate position that I know to cherish every second I have in life,and to enjoy every moment I have with my family

I got my new portable oxygen concentrator,a inogen one G3, and we raised enough money to buy 3 batteries.I am so thrilled with it,its given me back my independence, I can carry it my self and I've never been at home since I got it lol ☺.

I am a fighter,I'll kick sarcoids ass.I've fought my whole life,don't worry,I don't mean physically, I'm not some mental thug lmao 😂,and I don't intend to stop fighting now.

I hope everyone's doing OK

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22 Replies

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  • What shattering news for you, I am so sorry that your hopes have been dashed, So impressed though that you have such a great spirit. you carry on, lovely one, fighting this one. Love and wishes from my heart for you, Polly x

  • <3 Thank you xoxoxo

  • You are as amazing beautiful lady I admire you greatly good luck with your fight ♥♥♥

  • One tough cookie! God bless.

  • Sorry to hear your news but good on you for not just sitting back. In one way its good that you have had a decision made for you. As someone who will need a transplant (because of sarcoidosis) I am still swithering if I am offered it whether I would take it. I just hope that should I get a decision similar to yours I can summon up your strength.

    Marie x

  • Go for it brave lady such a positive attitude

    Carole xx

  • All the very best , really admire you, Xx

  • Good for you Gothmum, glad you are not giving in. Pete has had sarc for 25 years, has had lymph nodes removed. It's in his lungs, nervous system, throat, joints and possibly the heart but Brompton aren't sure. He is not on oxygen though but does have copd and osteoporosis.

    Odd how the same disease affects people in different ways. Hope you do well and kick ass!

    Wishing you well. Xxx

  • Fab photo - you are so pretty. And so gutsy - glad to hear you are not to be beaten. You have the face of a fighter (not literally obviously I dont mean a Tyson face haha) Get out girl and keep going! Lots and lots of love TAd xx

  • You are a beautiful woman with tremendous strength.

    Here most of us are...... complaining about the weather, cost of electricity and the price of fish (not really - obviously -I would never ever complain about the price of fish- it is just a saying). I feel very humble. I wish you the best of everything and more...and blow the damp patch that has reappeared on my ceiling.

    Jennifer

  • You are an inspiration, we call should live every day as if it's our last.

  • Bravo Gothmum, What an inspiring post and such a boost for people feeling down.

    Love your photo.

    Suzyxxx

  • Good for you. It warms my heart to hear your fighting spirit. So glad you have you independence back I felt the same way when I got my mobility scooter, I long for the warmer weather.

    Good luck.

    Kim

  • That's the spirit Gothmum you fight with everything you have got. That's a lovely photo, I wish I looked as good as you.

    Go get 'em girl :) xx

  • I like you as you sounds like it will be fun when in you company as you are not givening into it good on you

  • Good on you, what an inspiration to us all just sitting here not doing a lot.

    Sending you all my very best wishes.

    take care

    polly xx

  • Not good news for you but I like you attitude, very sassy. You go girl. Feel quite ashamed as iv all but give up.

  • Thanks so much for the lovely replies.And I thought I'd better say,my real names Tracey,gothmum can be slightly scary lol 😂.I'm always here if anyone needs a chat or a laugh,if you like a wicked sense of humour 😉 hehehe.Much love to everyone xxx

  • Well done gothmum, great attitude, we adjust to what we have and get on with it don't we :) .

  • Tracey Admire your spirit, wish you all the luck in the world.

  • What determination you have, super photo, you don't look very old. I really admire you and know you are one that keeps fighting. Best of luck.

    Hilde72

  • Hi,I'm 42 and have had this evil disease since my 30s.The photo was taken last year,luckily my daughters a hairdresser so she preens me before I get a photo taken lol 😉 .stay well xxx

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