• Transplant Advocates

    Posted by breath24 on July 1, 2024 at 10:44 am

    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!

    loulou replied 1 week, 3 days ago 4 Members · 3 Replies
  • 3 Replies
  • Anita C

    Member
    July 2, 2024 at 2:20 pm

    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.

    • loulou

      Member
      July 10, 2024 at 12:36 pm

      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.

  • Charlene Marshall

    Member
    July 9, 2024 at 9:07 pm

    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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