General
Whole person care
We had an amazing support group last night with @fern22. So many amazing pieces that we could have spent 3 hours just going over it all.
She brought up a topic I feel so passionate about, which is whole patient care, and what it looks like to have care that is focused on who we are as people rather than just our transplanted organ, or whatever is physically going on in our bodies.
Even illustrated by our shares last night, we're all different people who care about different things, and value different things, and how can we create care plans that align with all of who we are? We're people before patients.
Are there ways you remind your medical team (or yourself) of that when things seem to get lost in only caring for your transplant? what does caring for yourself as a person and not just a patient mean for you?
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Love it @AliEm14 ! Thanks for continuing the discussion. I just got back from a walk in nature because I felt myself getting overwhelmed with life and health... I paused and said maybe I just need to step away, get quiet, and listen. There can be so much to get wrapped up in but if we just take that one big breath and allow ourselves to slow down, that's where the magic can start to pour in.
In conversations with my care team; I always try to be honest about how I'm feeling. I bring up my own research and questions. I ask them about their experience dealing with certain situations and diagnosis. I advocate for things that matter to me and let my team know what quality of life looks like and means to me. I am not afraid to push back a little with things that I feel do not suit my best interest. I have also created a care team outside of my medical team; functional medicine doctor, chinese medicine doctor, acupuncturist.
always be your own self advocate cause if u dont speak up for yourself then people wont know how to help u unless u voice your opinion . if your not feeling wright about things going always make Shure to reach out to love ones or your care to see how they make situation better for u in the long run . i have a dedicated counselor i talk to once a week to make Shure that my mental health is on point
I'm so glad this important topic can be continued in this discussion. I hope people continue to share becasue sometimes this is exactly what we need as patients - to see that as hard as it is to speak up and put yourself first, we all go through it and the different ways we go through it!
I do many different things but for me whole person care is looking as to how each treatment will affect my quality of life and ability to manage everyday. It includes asking about different options and inputs from a multidisciplinary team. It means being aware of the fact that sometimes I will have to relearn to cope with something and that my goals and priorities in life will shift during different times. Whole person care means being honest with my doctors about major stress factors outside of my health so that they COULD see me as a whole person and not just symptoms associated with my transplant.