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Transplant Advocates
I have been traveling the IPF journey for some time, and have reached the point that I am being considered for lung transplantation. I’ve been through the process at a couple of hospitals, and while much of it has been positive, I do find the whole process rather opaque and confusing. My question is this: Are there any people and/or groups who work as advocates for the patients involved? I would greatly appreciate some help navigating the system, as well as having an advocate to suggest getting the time right, answering questions clearly, and what recourses might be available should a disagreement arise.
Thanks!
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3 Replies
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Check with the hospital you will be using and see if they have a Peer Mentor program. These can be very helpful to put you in touch with someone who is living with a transplant. Also, a Transplant Support Group if you haven’t found one already. And this site can be helpful for general questions, too. If you happen to be going to the U of Michigan, by chance, let me know. That’s where I had mine.
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More curious about your transplant at u of m, as I am also from mid Michigan. Plz advise. I am currently waiting to be evaluated at Grand Rapids Corewell Health.
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Hi @Breath24
Good question! I don’t know if you’ve looked here already but the Lung Transplant Foundation has a mentorship program that is likely peer support. You could check them out – I’ve heard good things. Goodluck!
Char.
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