Liver
The dreaded R word (rejection)
I was talking to a friend who is also a transplant recipient a while ago and we were talking about trusting our bodies again post transplant. I’ve always been really in tune with my body and I’m learning what different symptoms mean (for example PMS makes me throw up, which makes my bilirubin go up. If I go in for labs while I’m PMS-ing my doctors will freak out but I also know as soon as my period ends my levels go back to normal)
I remember my first mild rejection episode 3ish months after surgery. I’d felt off but also everything felt strange because I’d just had a transplant. And I remember my doctors calling me telling me to get to the hospital ASAP and I was so confused. I ended up having a collapsed duct and needing surgery but I couldn’t have told you that. I thought it was adjustment pain.
I’m slowly figuring out my body and what things mean and feel like but it’s hard not having that trust like I had before. I knew my pre transplant illness in and out, I knew what each symptom meant. I’m not as familiar with new liver to know what everything means.
i’m curious - what do you feel in your body that lets you know something is off? And do you feel like you can trust your body after transplant, especially if something went wrong and you didn’t know?
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I will say it took me some years to truly understand my body after transplant. I wouldn't have my first issue with rejection until 7 years post transplant. I ignored my symptoms at first but when I couldn't even go up the stairs in my own home I knew something was wrong. Today, I know when something is off with my body or my levels aren't right.
Transplant Patient
@ChefAmanda thats awesome! I’m hoping to get more and more in tune with my body as time goes on
I agree with @ChefAmanda, it's only been recently (I'm three years post) where I feel like I understand my body. My experiences with the "r" word came immediately post transplant and happened twice. Neither time did I recognize any symptoms, but I was barely a month and two months post transplant, so my body was in healing mode. Haven't had any rejection issues since them, but I've had other issues and might have another brewing now, and I just have known that there was something that wasn't right. My energy level dropped a bit, my temperature went up (but not an actual fever), my weight fluctuates. All of those things are indicators to me that labs need to be done and we need to do some investigating.
Transplant Patient
@Denise_R interesting! I find it so interesting to hear what symptoms other people experience. For me it’s chills, nausea or vomiting and serious lightheaded ness. I’m still trying to wrap my head around what people mean when they say liver pain though. Maybe I’ll figure that out once my scars heal a bit more 😂
Transplant Patient
The "R" word and I are currently (majorly) #socialdistancing, and we intend to stay steady on that trend. 🤞😃
🤞
Transplant Patient
@Sdey0522 😂😂😂 I love that! Social distancing for the win!