Experience with serious cgvhd and very poor lung function

Has anyone had experience of serious cgvhd of the lungs with lung damage and very poor function that is not getting better


A great big welcome to our forum @Sophie I cannot help you medically, but you are now part of our forum family.
Do you have any support from family and friends?
What have your medical team said to you and done for you.
I should think your symptoms/side effects are scary and debilitating.
I will copy your post to @GemmaBloodCancerUK for you.
If you would like to talk to someone the Blood Cancer UK is there for you.
I await others responses which I hope can include their personal experiences
I also look forward to hearing more about you.
Look after and be kind to yourself.

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Hello @Sophie and thank you for posting.
Is it you that is experiencing CGVHD of the lungs? If so, are you receiving any treatment at present?
If you would like to talk things through I would be happy to arrange this or you can call/email the helpline too: How to contact Blood Cancer UK | Blood Cancer UK
Kind regards

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