Waiting on another Kidney transplant...again

Berriosa1234

Hey everyone, I just wanted to write on here today about my waiting for a second kidney transplant. Having been transplanted once before and going through all the emotions of waiting and wondering. This second time around those same feelings occur. It is normal. I do understand the frustration of wondering when and if it will ever happen. Its been three years that Ive been on the deceased donor wait list but I continue to press on. Would love to have some dialogue here in this community for those who have been waiting for their second chance, what are you feeling? What have you beeen doing to pass the time as you wait? What has the evaluation process been like for you? Looking forward to the dialogue.

Jeanmarie

Thank you for this. I really hope you do not have to wait much longer. I think this is one of the most difficult parts of a transplant. The waiting... My transplant is at 17 1/2 years right now. I am so grateful it has held on for so long. But my labs are showing it is time to start the re-transplant process.

I have been so overwhelmed with different emotions. All the "what ifs and what will happen have been flooding my mind. I have a potential living donor. But I am filled with guilt that I am taking someone else's kidney. My dad was this current transplant living donor.

I know the stress is not good at all for my health. So I started meditating twice a day. It has helped to keep the anxiety down. I also try to remind myself to only focus on the things I can control. I love walking outside to calm myself down. And just take it one day at a time. When I am really overwhelmed, I will even take it one hour at a time.

It is frustrating to wait. Especially when you do not feel well. I hope it happens for you soon!!

Berriosa1234

Thank you for responding. Yes I am learning to take things one day at a time. I am working on doing some journaling. Listen to funny podcasts and peruse more social media. I also go outside and walk my dogs all the time, so thats helpful too. My first kidney lasted 13 years. so i am hoping this second one will last for the rest of my life.

Good luck to you with your new potential search. To go 17 years is awesome. Like you said take it one hour to one day at a time.

Kouimet

My son had his first transplant when he was 2 years old. We had to start dialysis again in 2021 and 18 months later he received his second kidney transplant. I know that pediatric patients get a priority for deceased donor list, but it was still a struggle. I had another child also waiting so it was something we did as a family.

What I was most surprised with while waiting for the kidney offer was the anxiety that would hit me as a caregiver. My child did not remember much of his first 3 years of life and all the health struggles he had. He didn't complain as he just did what he was told (ie going to dialysis everyday and medication through g tube...all things he had no say in or disagreement with) At 10 years old and going through it again, he had his own feelings and struggles and I also had mine. I needed to get his cooperation and support for all he was going through and I needed to encourage him in different ways than before. He asked questions that I had to find honest (age appropriate) answers and explanations for. It brought a whole new perspective to things for me.

Waiting is hard, especially when that call can come in at any time. My son struggled with understanding and accepting that someone had to die to be a deceased donor and that he was most likely going to have a deceased donor again. We found it hard to "pray" for that call to come, even though we looked forward to having the transplant so we could move past this. We found it easier to think about our future donor and hope they were living their best life. Everyday we would come up with something we hoped our donor was doing on that day because we knew those days were numbered. By focusing on sharing our story and advocating to the community the need for organ donation, it also helped us feel like we were helping the transplant community with every new person who signed up to be a donor. Instead of waiting and feeling helpless, we would find ways that made us feel like we were taking back some of that power we lost and we were doing something about it.