Lung Transplant listing...

[Lynnelovessunshine]

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

[mikeadams51]

Good for your persistence. If that’s what you want go for it and I hope all goes well. Good luck for the future

[Lynnelovessunshine in reply to mikeadams51]

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!!!

Not an easy decision......

Thank you for wishing me well xx

[mikeadams51 in reply to Lynnelovessunshine]

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

[Lynnelovessunshine in reply to mikeadams51]

❤️

I’m currently in the garden, resting after putting the washing out but also enjoying the birds singing.

Simple pleasures ❤️❤️❤️❤️ Xx

Take care xx

[Kristicats in reply to mikeadams51]

Is 68 really too old for transplant? Doesn’t seem old at all to me.

[mikeadams51 in reply to Kristicats]

Quite agree but that is the guidelines

[sassy59]

Wow Lynn, you’re one hell of a brave, persistent lady and I truly hope things go well for you.

Love and hugs xx 👍😘💖😘

[peege]

Bravo! Wishing you love and strength to see you through - plus lashings of luck Lynne

😘😘

[Damon1864 Volunteer]

It's good that you persisted with this and finally won. Good luck and let us know how you are.😊 Bernadette xx

[hypercat54]

Oh that's great well done. It just shows it pays to persevere. x

[Hidden]

Well done, i’m rooting for you 👍😉

[skischool]

You are a very brave and determined lady and we wish you well on that roller coaster ride.

Ski's and scruffy x

[Hacienda]

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

[Kristicats]

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

[Carnival567]

What a rollercoaster! I hope all goes well for you xxx

[Hidden]

Thinking of you and dont give up. Your 1 very brave lady. Be real proud of yourself. Take care of you x

[Caspiana]

At last! 😊 I am so happy for you Lynne. 👏👏👏xx

[Katinka46]

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.

Looking forward to the next episode.

love and the gentlest of hugs

Kate xxxx

[joyce74]

Hope things go well for you

[Ergendl]

Well done for your perseverance. All the best.

[Spacecat1]

Hope all goes well,chin up as they say. At least the consultant worked had for you.

[jackdup]

What wonderful news, will just pray it comes soon and all goes well. Good luck.

[Lynnelovessunshine]

Thank you to my wonderful ‘lung family’ for all your love and support ❤️ Xx

Very much appreciated xx

[Hidden]

Good luck hope it happens