What's your experience with dialysis? Give & get support here

@transplant2017 Welcome to Mayo Clinic Connect. We are a diverse group of people who share our stories and experiences, to support others on their own health journeys.

When we kidney disease patients hear those words - dialysis or transplant - it can indeed trigger a wide range of responses, each person has their own story. What is your current eGFR, if I may ask. It sounds like your AKI happened during surgery; was it caused by medical procedure? Your team had to do an emergency port, probably upper chest, for the catheter. Since you needed it right away, you were not given any choice in how it would be done, and were not prepared psychologically or physically, for dialysis. Prior to the liver transplant, did you have any kidney issues?

If you decide to search for a living donor, get the word out to friends/family/family-of-choice. How? An email or notice to people, with as much info as you care to share. Here is a Mayo Clinic article about transplant https://www.mayoclinic.org/tests-procedures/kidney-transplant/about/pac-20384777 And, here on Mayo Connect, we have a transplant discussion group https://connect.mayoclinic.org/group/transplants/ that has a wealth of information in different threads of talk.

Dialysis can seen as a time waster, but it can also be seen as a bridge to better kidney health in light of a transplant. And, given your circumstances, you may have the choice of in center hemodialysis, home hemodialysis, or peritoneal dialysis if you can. My husband was on PD for 5.5 years before his transplant, and for him, there were some accommodations to be made, but his life went on as before, right down to traveling on his job, and camping. A good source for more information is rsnhope.org.

Although you did not mention what part of the country you live in, there are resources available to you anywhere! Please come back with any questions you have. Do you have family or a support team with you?
Ginger

Thanks for your reply. The AKI happened during my liver transplant and when I woke up I had lines everywhere. I think dialysis was first done through a line in my neck and then they put a port in my upper chest. My egfr was 37 three months ago and in a steadily decline it went to 23. For some reason my Tacrolimus level drastically increased (without a dose change) and that is probably what is causing the egfr to decrease. They adjusted my tacro but it is still a little high and they don't really understand what is going on. My egfr is now hovering between 23 and 26. They have me doing labs every 2 weeks. I live in a western state but I have doctors in both my home state as well as Arizona.

I really don't want a living donor. I have a grandchild that was born with kidney issues and she has been told she will likely eventually need a transplant. Her egfr is a little better than mine so she is doing well now and probably will for a long time. The same people that could be my living donor would likely also be her living donor. I want to make sure she has one available if she ever gets to that point.

@transplant2017 A living donor is not necessarily someone who is related to you by blood. What matters is the matching of several different factors. My sister wanted to donate to me, but we recently found out I am not a candidate for transplant for at least 3 years due to other health issues. I gently reminded her that she could be evaluated now, and be an altruistic/non-directed donor to someone, if she wants. https://kidneydonormatch.org/ is a site you can explore. My eGFR is around 24-27. Yes, in an emergency, a catheter line goes into neck or upper chest. You may be able to do peritoneal dialysis if you need to go there, in the future.

It's good to hear your team is watching closely, and I hope you can get stabilized in short order. From everything I have heard, dialysis is not turned to until function drops around eGFR 10, although a nephrologist should start discussing it with you long before that.
Ginger

Great news! Creatinine is 2.4, eGFR up to 20 - no longer in end stage, back in stage 4!

@kamama94 Excellent news. As you've healed, have you been able to resume more normal activities? Hope so!

Fantastic news!

@kamama94 great news! You continue to be in my thoughts and prayers.

Hi, friend @kamama94, I been thinking of you and am so delighted with your fab lab results! Are you finding you have more energy/stamina now as well? Does this mean you are totally off of dialysis for now?

@fiesty776, hello, GF! Lots more energy, yes. Have been totally off dialysis since end of December. I know it's probably a temporary respite so am savoring eveery moment. Hope you are doing well also!

@kamamama94, Wow, 2 1/2 mos off dialysis may not be a record but it is terrific news indeed. Bet you may be feeling like I am after a year of no new plant purchases. Spent last weekend shopping nurseries, unloading the filled-to-brim hatchback 3 diff times and thinking, " I am truly, really back, yay!" Once again with broken, muddy fingernails and fresh air overload, life is grand. Thanks for asking.

Just want you to know that following your kidney journey has made me even more aware of the importance of welcoming and savoring each day! Wishing sunshine and smiles in your day!