Being taken of the Lung Transplant List - British Lung Foun...

British Lung Foundation

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Being taken of the Lung Transplant List

Joseph260268 profile image
Joseph260268

Good morning everyone, I was recently taken off the Lung Transplant at Wythenshaw Hospital because I had incurred a compressed fracture of my spine which has now healed. Unfortunately, because this happened and because I was a high-risk candidate, they decided this was a risk too far and I was removed from the transplant list. My question is: - I want to find out what options are still available to me, and I do not know if I should approach my GP or my Chest Specialist at my local hospital who referred me for the transplant? I just feel as though I have not been given any support since being removed from the list and I just need to know what the next step is as I feel as though I have been left on the scrap heap and I need answers to this question sooner rather than later.

Kind regards as always

Joe x

23 Replies

I think you need to talk to your consultant. And give the BLF help line a call they can offer advice and support while you sort out your next steps also talk to your gp its important that you get all the support you need

Thank you x

I'm sorry that this has happened Joseph. Must be a great disappointment for you. I think that you should try and get a consultation with the specialist at your local hospital to discuss things with him but contact your GP in the meantime. Best wishes xx

Joseph260268 profile image
Joseph260268 in reply to CDPO16

Thank you for your guidance x

I think that,as others have said,speaking to yourGP and consultant istheway Togo.At least you will know what’s happening.takecare

Joseph260268 profile image
Joseph260268 in reply to Oshgosh

Thank you

Damon1864 profile image
Damon1864Volunteer

So sorry to hear this it must have been a shock for you. I agree with everyone else speak to your consultant and GP and find out what other options are available to you, please keep us updated. Have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx

Thank you

As a duty of care your entitled to an explanation as to why / discuss any alternative interventions.

This news has upset me, as no thought to how this news has affected your health/well-being.

Hope you get a consultation soon to discuss your options.

Take care.

Joseph260268 profile image
Joseph260268 in reply to vwtopaz

Thank you

Bevvy profile image
Bevvy in reply to vwtopaz

To be fair it seems that reasons were given to Joseph as to why couldn’t remain on transplant list. It would not be then up to transplant team to discuss other options. Is not transplant role.Referring consultant (in particular) and gp now need to discuss options with Joseph.

Joseph260268 profile image
Joseph260268 in reply to Bevvy

Thank you

vwtopaz profile image
vwtopaz in reply to Bevvy

My post did not intend that it was responsibility of the transplant team, my Uncle was in the same situation the referring Consultant discussed alternatives on the same day, perhaps Scotland does things differently.

Joseph260268 profile image
Joseph260268 in reply to vwtopaz

Thank you

I’m Sorry To Hear You Have Been Taken Of The List For Transplant .. I Would Contact Your Consultant To Speak To Him About This And Also Contact BLF For Support .. Speak To Your GP If U Feel U Need Help With Your Mental Health Please Take Care Keep Safe 🖤🖤

Thank you

I’m sorry to know you’ve been taken off the transplant list. I hope you get the support and advice you need. Sending you lots of good wishes.

So sorry you've been given this shock. It was remiss of them to leave you without any sort of support. I hope by now you've found support. You are entitled to the best possible treatment for your condition, transplant or not.

That’s disappointing for you Joseph, I hope one of your doctors can come up with something else to help you.

So sorry to hear that. Hope you manage to get some medical support.

Joseph260268 profile image
Joseph260268 in reply to Ergendl

Thank you x

Hi Joseph. So sorry this has happened to you. I don't know how unwell you are at present but I would try and speak to the consultant who referred you initially for lung transplant assessment. They have a duty of care and you still need looking after. Do you think palliative care is an option? They can help facilitate extra care like physio for breathlessness and equipment for the home. I believe your GP can refer you to community palliative care also if it's appropriate.

Thank you for your reply and suggestions x

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