Not sure how to feel!: 15 months ago I... - British Lung Foun...

British Lung Foundation
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Not sure how to feel!

15 months ago I was rejected by Papworth for a lung transplant as they said my oesophagus was too damaged and I wouldn’t survive the operation!!!

Obviously, this initially felt like a death sentence as I felt that was it. Although the thought of going through a lung transplant scares the **** out of me!!! At least it was an option but this option got taken from me!!!

When I met with my Respiratory consultant - Dr ‘Rama’ at Barnet in March, she said I looked well. I told her the truth, my face masked the pain I was feeling!!! The upsetof everything and the fact that at the age of 49 (at the time) I’d been resigned to the scrap heap!

Rama was amazing, she contacted contacts at the Royal Brompton. I saw Dr Hull in May, explained everything to him, he said he’d look at my Papworth results, he could find no rvidence of damage so I had a Barium swallow at The RB. I got the resists yesterday, no damage, oesophagus is normal!!!!!

So, I’m going to be reassessed at the Harefield!!!

I’m not going to think about the outcome until I know the outcome, if that makes sense?

Love to you all and I hope things are going well.

Love Lynne ❤️❤️❤️❤️ Xx

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Another consultant playing games xx

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Good luck xx

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That really is incredible. I hope the assessment goes well 🤞

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I always remember the wise words of a Nurse Practioner, who was a mentor and wonderful woman. "Where there is life, there is hope"....she said that no matter what. So, there is always hope....I will always think that, too.

I wish you peace of mind...and awhole lot of hope!!!

Take good care,

Meg

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Thank you ❤️ Xx

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Hope all goes well and glad you are not dwelling on the assessment until it happens. Very best wishes

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Wow... Dear fellow Zebra. What a rollercoaster. I can imagine what a very strange place you are in at the moment. Elated, incredible dizzy, scared witless. But, but, but... Wow with knobs on. Hang on in there precious rare animal.

Love and hugs

Kate xxx

P.S. I wrote this originally on my iPad which then sulked and wouldn't send. In spite of all the help from our man in technology, Stone, I still haven't mastered the art of emojis on my desktop. So: picture two zebras, a rainbow, hearts and flowers.

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Thank you xx

🦓🦓❤️🌸🌸🌸🌸 xx🌈

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Thanks! Spot on.

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I am on a PC so can I do these on here please? And if so how? x

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Well, you can, but it is a tad complex for a Zebra of little brain. Google instructions for emojis on whatever PC you are using.

Good luck! Send me some flowers, please.

K x

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you cannot just accept what one doctor says, you have to 'shop' around. It took 4 years for me to be diagnosed properly....and I worked for the medical director who is the big boss of all the doctors! So the moto has got to be accept nothing before it is double and triple checked.

Good luck

Ax

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Harefield is excellent, they will do their best for you!

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Oh Lynne, 15 months of needless upset. A lung transplant is a big thing but as you say, at least it is an option. It’s always worth getting more than one opinion.I hope it goes well for you.

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Wow! What a story! Good luck to you with your assessment - what a good job you got a second opinion. xx Moy

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Glad you've found a good doctor, hope all goes well for you x

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What a turnaround for you. Wishing you all the best. Xxxx

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Hi Lynne, I recognise what you say. I am on the Transplant List, Double Lung, have been for over 2 years. I must be Lucky in that my Resp, Nurses, GP , Consultant and The QE., Transplant Hospital all agreed with all my Tests pre Decision for Transplant. I was very excited at the beginning. ( I still am) I Just wish a match would happen and I get my Call. I am a lot older than you(66) and this worries me for the Actual Op. I do know however, I am Fit enough. have had 5 courses of "Rehab" excellent, Go to Exercise Classes twice a week and the Gym every Wednesday,(Today) Yes, I am a bit slow, but a I try to increase each time. I wear a Fitbit to compete against myself, have my Oxygen at all times, had 4 Valves inserted into my Right Lung as my Left is Mush ( their words at hospital). So Here I am Trying so hard to be Ready for That call. Be Strong, Be Positive and Now you do have a Chance to have a Long Life, Go with it Hun. Love n Hugs. Carolina XXXX

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Thank you for your support ❤️ Xx

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Good luck with everything xx❤️Xx

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Hi girl got a feeling you are going to comeout on top and will all turn out good because of if you like your 2nd chance and how it happened. All the luck in the world Take care xxx

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Thank you ❤️❤️❤️❤️ Xx

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Wow! I hope things go well for you and you have the option. x

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Very best wishes to you. Majt 🌸

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That sounds hopeful. Fingers crossed everything goes well for you.let us all know how you get on.

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Good luck lynne x

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