Pre-Emptive Transplants

fern22

Has anyone in this community had a pre-emptive transplant? Or going through that process? How was it/has it been for you navigating that? What were/are some of the biggest challenges? What would have made it easier/ more efficient? Lastly, what advice would you give someone else who is going through the pre-emptive process?

fern22

I forgot to clarify kidney preemptive transplant.

TServold

I had a preemptive transplant. I received my transplant before I needed dialysis. I was close to needing it, but was able to avoid it. I was very in tune with my body. Every night when I laid down if I couldn't catch my breath for a second it would send me into a panic. I would lay awake thinking how tomorrow was the day I would start dialysis. Every time I didn't drink enough water, or meet my water goal I would beat myself up. If I "cheated" and had potato chips, or a can of regular beans that were not no salt added I was in my own head. Labs were torture on my emotions. I would be stressed and relieved all in the same day. One slight change in labs and I would want a redraw. In the end all that stress wasn't worth it. I kept the stress to myself. I didn't talk to anyone about it. I would wait until my husband fell asleep and get up from bed and go into the laundry room and cry. I do not suggest this at all. The things that helped me most were knowing my dates of lab draws and knowing what my parameters were. My nephrologist had set clear parameters for me, and I knew to call her when I exceeded those. I had routine check-ins. I also went and toured the dialysis center and talked to the nurses. I was comfortable with knowledge about what to expect should I need dialysis. Anxious about it but informed. The nurse told me she had never had someone call for a tour before but she was going to suggest it more.

Jeanmarie

I had a preemptive kidney transplant, 18 years ago. I am now on the wait list for a second kidney transplant. I am still holding on to hope that I can get a preemptive transplant the second time around.

I feel like my emotions are stronger this time. I think because 18 years ago I was 22, so I still thought I was invincible. I am extremely stressed because the thought of dialysis is absolutely devastating to me. I do everything I possibly can to feel healthy so I can try to avoid dialysis. I

The other part of hoping for a preemptive transplant was the first time everyone in my family was tested. My dad was the only match. So the thought of a kidney coming from outside of the family is really upsetting. I just can't possibly ask anyone to go through all that for me. It definitely is a huge range of emotions.

I think support groups are helpful, talking to anyone else that has gone through the process is also helpful. I have found staying present, so meditation, yoga, and anything that helps me focus on this moment really helps with the anxiety and stress.

Karin

Hi @fern22 - I had a pre emptive transplant in 2009 and was going to have a second one last year… however, an angiogram put me over the edge and pushed me into dialysis for a month and a half. It was very different. Pre-emptive was controlled and well planned and I never felt as sick as I was during dialysis and the recovery was less dramatic vs the dialysis experience to transplant.