General
Early signs of transplant rejection
September 6, 2023
in General
For those of you who have had a rejection episode, wondering what your symptoms were that caused you to seek treatment? Are there any flags you could have noticed earlier? Would love to learn from your experience!
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Both of my children faced rejection issues and neither one had any symptoms or showed any signs. The problems were discovered at their 6 month post transplant kidney biopsies. They both went on strong steroid medication and had a repeat biopsy 2 months later. One child was improved and one was not. We repeated the protocol with the rejection treatment and that child is now doing better. It was scary because all the labs were showing good results and it was not caught until they did the biopsy.
I just experienced a slight rejection scare and I didn’t have any symptoms at all. I went for my 6 months labs and they came back questionable so we repeated and I was ordered a liver biopsy as well and that’s when they found the rejection. We caught it early and with increased meds I’m getting better everyday. But I had no idea anything was wrong at all.
I had an acute rejection back in October 2022, I had been feeling a little more tired, started having a HA “which is unusual for me” my right side had a dull ache. I just had my check up in July and they decreased my prograf to 1/1. J-A- labs were stable, Sept my liver numbers had jumped quite significantly I was put on prednisone immediately repeated labs my numbers were even higher put in hospital over Thanksgiving IV steroids increased meds, I wanted to wait on the liver biopsy to see if the meds would help first, thank goodness w/the high doses of steroids, increased immunosuppressant meds my numbers started coming back down. Today they r back to normal, I am still taking a lot of immunosuppressants for being almost 3years but I am 🙏🏻 that we will start decreasing them in October I have been on monthly labs since my LTP. they r also monitoring my kidneys pretty close also. So scary for sure Drs. assured me the whole time that if caught early there is no damage to the liver which mine was. So very great full.
Deb I am so glad to hear you r doing better.💚
Melsamm, thank you. I’m still very tired, still have tremors and still have stomach issues but I can live with these. I’m getting better everyday. I’m waiting on labs to come in today. 😳
I've had a few rejection episodes throughout the years. One of the acute rejection experiences did not show anything in the labs. I was just feeling so worn out. I just knew something was wrong with my body. I called the Transplant team and asked them to do a biopsy.
The other times were all antibody-mediated rejection episodes. Again, I just felt really worn out. Needing to sleep a lot. My body would ache. I never had any fevers. At one point my urine output was not normal. All of these were caught early enough. I am extremely diligent about getting labs and reading my own lab reports and calling when I notice something a little off.
Jeanmarie I am the same about reviewing my labs, also if I feel off I call my TP team immediately too. I think after TP our bodies r so different now. Like someone said it’s a new way of life now.
Incredible that diligence and listening to your body really pays off. So glad you did that and advocated for yourself.
Thank you for sharing that. It is a bit unsettling that they can be so undetected without the biopsy.