For those who already know 20 months ago I was told by Papworth that I was severe enough for a transplant but due to a damaged Oesophagus due to reflux I didn’t qualify!!!
Last March I broke down in front of my respiratory consultant and told her that I felt I’d been let down by the system. She personally fought for a 2nd opinion and a new roller coaster began.....
Royal Brompton consultation, no obvious damage to Oesophagus so....
Barium swallow at the Brompton
Royal Brompton consultation.... BW acceptable - recommendation to go to Harefield for assessments
Harefield initial tests- had I had the Impedence study they’d asked for? Miss communication!!! No one had asked!
Harefield 24 hour impedence test!! Not pleasant but essential to test Reflux!
3 weeks later.... the results ... I have reflux but assessments can go ahead....
March 4th/5th- 2 gruelling days of intensive tests..... 😩 “you are a very sick lady” “how are you managing to work 4 days with 19%lung function?”
March 7th - “you are a suitable candidate for lung transplant”
Due to how poor my lungs are I need to be on the list sooner than later!!!!
So within the next month or so I’ll be going back to Harefield to sign the forms and a new roller coaster will begin....... 🙏 xx
Love to you all ❤️❤️❤️❤️ Xx
Written by
Lynnelovessunshine
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It’s not I want, I want my lungs to be as they were before I got Rheumatoid Arthritis but that’s not going to happen!!!
A transplant is not a cure but a chance at a more normal life!!
I’ve been told that one nasty infection could wipe me out so although I do have a choice I feel that if I want a chance to live longer I don’t have a choice!!!
That is what I’m afraid of one serious infection could spell my end. I am nearly 68 with 20% lung function and too old for a transplant. However I have set my target to reach 75 with the power of positive thinking here’s hoping anyway. Fingers crossed
Hi Lynne. Well Hun it's not been straight forward for you has it. I just re-read your last post from 2 months ago. Thank Goodness your Consultant pushed it for you, Good for her, and That Harefield have agreed. I wish you every Success for your Pre Assessment. Be Strong & Positive now, you have come so far. I am Following you so will receive your Updates. Love n Hugs Chica. XXXXX
What a palaver! Being told no then only due to your insistence then given the go ahead after all! 🤞🤞hope your wait isn’t too long and please look after yourself well. X
As always, my dear, I am late in picking up posts. My... what a mega rollercoaster you have been on, and still are of course. Wow, with knobs on. What a wonderful woman you are, strong, gracious, funny and a survivor. Isn't it tricky when hospitals with the reputation of Papworth fail us. I am in a group of patients with CTPEH for whom Papworth is the Mecca and can do no wrong. Good for RBH.
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