General
The value of community
I want to shout out our amazing peer mentors here on transplantlyfe (Have you connected with them yet? You can find them under the find a friend tab)
I've been doing this transplant thing for a while & most days I'd like to say I'm pretty good at it. I know a lot, both medically & the psychology behind nervous system responses. It's literally my job! & this week I got test results that sent me reeling (I'm totally fine by the way! Everything got figured out)
I was saying to my husband that night doctors delivering news needs to come with a phone a friend option! Trying to absorb any information when I'm reacting isn't an easy task, & while I try to bring someone with me if I know I have something coming up, sometimes things come up out of the blue.
I knew the tools, but I don't know if everyone does. I think coordinators & nurses & social workers should be making referrals to support groups & peer mentoring.
I reached out to one of our peer mentors & let her know I was having trouble grounding myself after a phone call. I knew the tools, & in that moment I needed an outside perspective & she was able to walk me through it. We all need support, we all need someone to come alongside us.
How much better do you think things could be if patients were listened to, respected & given support & resources to thrive?!?!
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@AliEm14, I absolutely agree that patients need all the support that they need. To often we don’t ask and we just let it go. How you handled this is the best way this should have been handled. Keep fighting the good fight because all here are in your corner.
I don’t know what I’d do without my peers on transplantlyfe. It’s nice to know you can talk to someone who actually knows how you feel. I’m quite a bit older than most if you but I think we’ve all experienced the same things medically and mentally. We’re all in a constant fight for our lives everyday.
I to just received some not so good results myself, I am in a different space right now from my LTP. I to like you Deb are much older,,no matter the age it’s great to have Transplantlyfe to be there for us all. Living life to the fullest, grateful for each day is so important and to keep fighting.