Helping Others’ Understand Organ Donation
As a patient living with idiopathic pulmonary fibrosis (IPF), a life-threatening and rare lung disease, I feel a sense of pressure to educate others on what it’s like to live with this disease.
Part of that education feels like it’s constantly helping others understand that transplant is not a cure for IPF. It certainly is a great alternative to dealing with constant shortness of breath and a cough, but there is a lot of work that goes into managing a successful lung transplant.
I recently had a conversation that highlighted for me how little others know about organ transplantation. More specifically, little seems known about how scarcely available organs are for transplantation, how delicate the death of the donor needs to be in order to donate their organs, and how difficult for the recipient it is to manage rejection concerns. I am certainly learning this difficult process first-hand, and feel like it’s a conversation I am constantly having with others in an effort to educate them that a transplant will not be a “perfect solution” or “cure” for me.
As an IPF patient, do you take on the responsibility of educating others about your disease and/or lung transplantation?
If so, how do you do that?
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