Liver
Immediate Rejection
I was reading an article this morning about how living donation, especially in children, lowers the rejection rate. (https://transplantnews.com/children-receiving-living-donor-liver-transplant-less-likely-to-experience-organ-rejection/). I was transplanted at the top hospital in Western Canada, and the leader in organ transplants. And my first transplant, a living donation, failed almost immediately. Within a few days I needed a second transplant (this time a deceased donor) as I was in full blown rejection.
Sometimes I think that first transplant didn't affect me, since I was sedated the entire time and only woke up after my second transplant. But I'm realizing that initial transplant affected me more than I even realized. I've had a challenging road, which my doctors said would happen due to the major surgeries within a short time span and needing a second transplant, but I've never been in full blown, uncontrolled rejection since.
My body, though, still remembers what that rejection felt like. And on a body memory level that's something I still need to work through. The other night my husband heard me banging around upstairs and when he came to ask me what I was doing I said, "I'm packing a hospital bag so you can just grab it in case I go into rejection." It's one thing to be aware of what's going on in your body, but it's another to live in constant fear. And I'm trying to find a healthy balance.
I am beyond grateful for both my donors. And I'm curious how do you manage the very real fear of rejection with also living your life and not letting the fear rule you?
1 - 7 of 7 Replies
Since I got home from my first transplant I never not had a small bag packed for the hospital. I never considered it fear, I was always just prepared.
When it comes to rejection I just listen to my body. If something is not right or something is off I call my transplant nurse and we usually start with labs. I think over time you learn what is rejection and what is not feeling well.
It’s all a process.. give yourself some grace.
Transplant Patient
@AliEm14 and @ChefAmanda : have the initial fears about rejection somewhat gotten better as time has elapsed?
In my case, after my heart transplant which was almost 8 years ago, I constantly used to worry (obsess) about rejection. Nowadays, I'm not so fearful. I try to remain positive, but I'm aware and sensitive about the fact that rejection could become a reality (without warning).
Transplant Patient
@Sdey0522 i’m 2.5 years out now and don’t really think about rejection.
its definitely been a learning curve - learning to trust this liver and my body. The medical trauma of that first immediate rejection is still really present for me, but it’s more so working through the traumatic memories over the fear it will happen again.
Chef Amanda me to I had my first🙏🏻last rejection 2.5 years out from my LTP. My TP team have a standing order at the lab i was not feeling well went and had labs I was in rejection started on prednisone immediately sent to the hospital. Here I am 5 months later Liver numbers r back to normal😊💚 still makes me nervous it could happen again b/c I was told this is uncommon after almost 3yrs. coming up. On a lot of immuno meds right now but hope I will be weaned down soon. So grateful it can be reversed w/no damage to liver.
Transplant Patient
Good to hear, @AliEm14 - indeed, you're so right about the learning curve to trust the transplanted organ.
@Melsamm - so glad they were able to manage the rejection episode quickly! 👍
Sdney Thank you😊💚 it’s a daily process to understand this new organ in our bodies but it’s all good.
Happy 🐣 Easter
yes, @AliEm14 going through something like a failed transplant is very taxing and traumatizing on a body. I’m less worried about outright rejection and more about chronic disease slowly destroying my kidney function. Acute rejection can sometimes be reversed, but I’ve been told over and over again that the chronic disease is what’s hard to stop.
I recently had an issue with my Envarsus (time released tacro) that was impacting my kidney function. My GFR got down to 30, and is slowly recovering as we lower the immunosuppression.
I do get really anxious around lab draws still (sometimes more, sometimes less), but I don’t keep a bag packed.
I believe that whatever helps you feel safe is the right way to go. I’m always all about increasing safety in my and with my body. 🤗