TransplantLyfe — TransplantLyfe

General

Medical teams and advocacy

AliEm14Expert
Transplant Patient
October 14, 2026 in General

Last night in support group we had an amazing discussion on working with our medical teams and collaborative care.

One of the things I personally have been fascinated with lately is the doctor/patient dynamic, and that line between actually being part of your care and having it be something that happens to you. What does it look like when we ask questions, when we take initiative and actually have informed decision making around what happens? I'm sure we've all had experiences where this has happened, and where it hasn't.

I mentioned this in group but one of the things that I find fascinating from a trauma background is how our trauma responses play a role in all of this, and how maybe we have fallen into that mentality of throwing our hands up and letting the doctors handle everything because it's what made sense at the time, or we have that as soon as we get into a medical setting we freeze response to things, and how advocacy can look in these situations too.

I'd love to hear your thoughts, and stories.

1 - 2 of 2 Replies

  • BabyJ25Transplant Patient

    I was very reliant on medics to make decisions for me but after developing a severe reaction to a drug I have learnt to read up question negotiate and advocate for myself and now feel empowered working with my medical team

    October 14, 2026
  • jdanishevskyTransplant Patient

    This is a great topic, sorry I missed the group chat. I always rely on my medical team/family, but I am always and have always been involved in my health journey. Through it all, I wanted to make sure that I understand what they are doing and why. I have done when I was young, just do it, but not any longer. I want to know and make sure that I understand, so that I can let them help me by helping them with my own input in a way.

    October 15, 2026
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