My niece has Cystic Fibrosis and has been evaluated for transplant list

Posted by Dawngryder @dawngryder, Jul 10, 2014

My niece is 22 and has Cystic Fibrosis. She has been evaluated for the transplant list and so far the primary hospital won’t list her, as she has what sounds like the same situation the young man in your story has..abnormal tissue growing around her port that occluded then SVC, creating collateral vessels. The doctors say her survival rate is low for the transplant surgery because of this finding. They are looking to other hospitals that perform high risk transplants. In the meantime, we wait and her lung functions drop. Waiting is hard on the transplant list, I can imagine..waiting to hear you can be listed, is even harder. We as a family, are looking for some guidance, some advice, other than waiting. Someone has to have some idea that would give her hope! She deserves a chance to
breathe easy!

Hi, @dawngryder. Thank you for your post. Here’s a link to information on lifestyle and home remedies for Cystic Fibrosis, also some information on coping and support: Does anyone else have some guidance for Dawn?

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