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 π. 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 βΊ.
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 π,and I don't intend to stop fighting now.
I hope everyone's doing OK
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gothmum
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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
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.
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.
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
Thanks so much for the lovely replies.And I thought I'd better say,my real names Tracey,gothmum can be slightly scary lol π.I'm always here if anyone needs a chat or a laugh,if you like a wicked sense of humour π hehehe.Much love to everyone xxx
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 π .stay well xxx
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