Transplant list changed!

Feeling disheartened after my last wythenshawe app. The criteria has changed and has gone national with a so called emergency list. He said sickest first even if their chance of survival is poor. I am housebound, can hardly walk but only need oxygen of an evening. Apart from my lungs I am doing good and go to pulminary rehab every week. I feel my detariation now but was hoping to get my transplant whilst I was strong enough to do well afterwards. How do others feel?

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well southy I feel irate for you more so after seeing the biopic movie of a football star he had a liver transplant and so soon after went on the downward course to undo all the surgeons work, there not so many lungs about yet it only seems logic to let the young first if they have chance of making good.

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So annoying isn't it. Thank you xx

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That's such a shame southy. Thinking of you. Xxxx

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Hi there, I am also on the transplant list. At Newcastle, they explained the procedure to me and whilst it is true that people who are in a poorer condition are given priority, this is only if they are still a viable candidate. Transplants are not done where the team feels there is little chance of survival. I was concerned that I have one of the rarer blood groups (B) but it was explained to me that prior experience indicates that those with rarer blood groups tend to get transplants sooner. The only reason I can think of for this is that the 'priority group' are less likely to have a rare blood group so the offer' moves down the list quicker. Anyway Southy, stay positive, the call could come at any time.

Helen

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I take on board what you say, it's a stressful time.

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Hi 👋Southy aww keep hope I to am hoping for transplant & I have yet to have an assessment at whynshaw . So I probably will be told the same as yourself . My fv1 is 30 percent & I have nearly finished pulmonary rehab & I am so drained with the symptoms in my chest aswell as coping with sob . Anyway after reading your post I know it's hard & think alike . Also II agree with you regarding transplant you mention that you try to keep strong & as well as you can be & struggling & you then get told that criteria has changed so No wounder you feel disheartnerd . Shame your referring consultant had not mentioned this to you to at least put you in a better mind set & prepared You . However Do try not to get to down in yourself & keep strong as you have to keep positive . P.S. if you don't mind sharing what is your FV if you know . I will look out for you & hope you keep well strong . Also this forum is best place To unload on as we al have l similar Heath problems & can relate & understand & support each other the members will keep you strong so don't give up & never say never your call my be sooner than you think x Bernadette x

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My fv1 is 28% xx

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That sucks - so frustrating. Stay positive and hopefully you won't have to wait too long southy. Good luck and all best wishes x

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Hiya, Sorry to ask this but what has happened to the transplant criteria? I am on the list at Wythenshaw too just seen your comment but was not aware there had been a change Can you help me please? Like you I am doing everything I can to keep strong and fit, its hard but hopefully will be worth it eh?

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