Just got word from the transplant team that they now consider me too high a risk for a double lung transplant.
As some of you may remember the assessment work up flagged up a calcification build up in a heart vessel ( LAD) which needed sorting.
I subsequently went to the Harefield for angioplasty and a stent was inserted BUT this, for whatever reason, triggered a mild/ mini stroke.
Despite clear imaging on the brain my left side got weakened along with blurred vision and it is this which has spooked the transplant team.
Checking the European lung allocation criteria there is no mention whatsoever of mini strokes being a contraindication when considering transplant suitability so i am obviously challenging their decision as my work up showed i was as good as it gets despite the stent which is quite common and has now been corrected.
I have requested a 2nd opinion at the Papworth in Cambridge so fingers crossed and silent prayers.
I will keep you all informed but in the meantime stay safe and cozy…
Xx
Written by
Mrbojangles
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Sorry to hear of that blip in proceedings Mrb but hopefully Papworth can help you and you’ll be back on track in no time. Thinking of you dear friend. Xx😘💞
Oh, I am sorry that you have this happening to you and admire your persistence in gathering more information. Good luck with your investigation at Papworth. Grace
Oh dear, how disappointing for you, but you are quite right to challenge it I wish you every success with it. Keep us updated on how it goes and 🤞🤞🤞fingers crossed for a good result xxx
So sorry to hear this. What a bitter disappointment after all that you have gone through.I do hope that Papworth come up with the goods. Thank you for keeping us in the picture.
Very disappointing for you but not the end of the road just yet and cardiology could still come to your rescue Thinking outside of the box maybe a heart and lung transplant could be a consideration if it meant saving your life in the future?
Really sorry you have been so disappointed with this news MrB. Good that you are challenging their decision and hope that Papworth will be have a positive answer for you. Take care xxx 😊
Sometimes the risks r just too great.disappointing though.having a stroke during a sm stent surgery, isn't gd.their main priority is your well being xx
Quite a blow , to say the least , no doubt you have been devastated , but obviously you have a fighting spirit and hopefully you will get a satisfactory result in the end . Wishing you the best of luck and the strength to keep on fighting going forward 🙏🥰
So sorry to hear this , know how you feel as I got refused for being overweight , which I am not now . Good luck with everything, my very best wishes x 🙏👍
So disappointing for you after everything you’ve gone through! Keeping my fingers and toes crossed for you to get better news from Papworth 🤞🤞 Take care and good luck x
That’s really disappointing for you I hope you’re able to get a second opinion.
I read your post earlier but I’m afraid I didn’t know what to say. It sometimes seems to me, from what other would-be tx recipients have said, that the clinical teams will find just about any reason not to add pts to the list. I know I’m wrong, and I know organs are precious, but I feel angry on your behalf at all the caltrops which seem to be scattered in your path. I think you should definitely challenge this decision and I wish you all the luck and love in the world x
If Papworth is not as helpful as you need them to be, what would the next step be? I ask because of you have to get into a legal challenge, it will be costly, I'm sure. You might think about what you'd do to get donations in order to meet those bills.(I have an awful of preparing for trouble that doesn't exist yet.)
OMG yes praying for you .I keep trying to persuade my doctor into putting my name down for a lung transplant -I know theres a long list of applicants & risks & tests that people ahve to undergo & my doctor just wont even consider me because she said because I could die
Seems to me she doesnt realise that without one it ll get worse & worse & eventually I ll die of it && she callls that doing the best by my lungs
I really hope Papworth will honour your request & help you to your advantage
You really ahve been though a lot & I feel for you /Thats awful when youre preparing yourself ready only to receive news like that
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New Year, new lungs?
Uplifting stories on single lung transplants needed please!
