General
Advocacy
What do you do when some labs come back abnormal?
Do you trust your doctor to know what they are doing or do you advocate for yourself/your loved one?
This question brings me back to when my son was simply not diagnosed with biliary atresia even after multiple blood draws and tests on his tiny newborn body until 8 weeks.
I knew something was as wrong because his belly, eating habits, and poop all were different then the other kids. But I trusted the Dr because they know best.
This brings me to yesterday. A few abnormal results came back and after thinking about trusting the dr vs advocating for him, I think I’m going to go with my gut and ask for a repeat on those labs to see if it was a fluke.
It is so difficult as a people pleaser to speak up for myself or my loved ones because I’m not the expert, but I know me/my kiddo on the daily.
Anyone else struggle with this? Just me 😂😊
1 - 4 of 4 Replies
With me I go with what my transplant team says because if my blood work does not look good they always have me get redrawn three days later. Even though I have a dr that my transplant team wants me to get my meds changed if it needs to be changed I always ask my team because my kidney dr does not seem to know what to do. Right now I am looking for a new kidney doctor. I to am a people pleaser so I need to learn to speak up. Good luck with everything you are going through 💚
My TP team has a standing order w/the lab. There motto is u don’t feel well go get your labs drawn, which I did and sure enough I was in acute rejection.
I think as a LTP I am learning more about my body..
Good Luck stay informed always ask questions!!💚
Transplant Patient
My team’s default is usually just to have me recheck them in a week or so, and I tend to follow this. There have been a few times I’ve pushed back, usually when it comes to hospitalizations or med changes, and every time my intuition has been right. My coordinator is amazing and usually just defaults to asking me what my gut says, how I’m feeling or what my theories on it are and we go off that. My team goes with I’ve been living in my body, I am very in tune with things and how I’m feeling, and any decisions made are very collaborative. They all know they can’t just tell me what to do 😂 I think it depends a lot on your transplant team. Labs have always felt like a small thing for me to relent on. It might be harder with a child, because kids tend to not be able to communicate how their bodies feel as well as adults, but at the end of the day I agree you are in this situation day in and day out, and if you don’t advocate no one will.
Yes, I go with trust your gut and get them redrawn. It's so aggravating that these docs have been trained and they're "supposed" to be tracking these things. That being said, the reason I go so acutely ill with CMV was because my transplant neph forgot to order the labs to check it when I stopped taking the preventative medicine. Best wishes!