u/Dovah907

I know this topic probably gets asked a lot here, but I’m struggling with the decision of whether to start dialysis now or try to hold out for a transplant.

For context: my kidney disease is likely genetic/developmental rather than autoimmune. My eGFR stayed around the mid-20s throughout my late teens and seemed stable, so I had stopped following up with my nephrologist for a few years and neglected my health. When I finally got labs again, my eGFR had dropped to 9.

A few months ago I got on the transplant list, and I’m extremely fortunate that my estimated wait time may only be around 2 years. Before hearing that, I had basically accepted that dialysis was next. Now I’m questioning whether it’s worth trying to avoid dialysis entirely until transplant.

Since getting serious about my health again, my labs have at least stabilized somewhat:

-eGFR has stayed around 9

-BUN dropped from the 90s to the 60s

-phosphorus went from high 6s to mid 5s

-most other labs are normal or improving

That said, my creatinine is still slowly rising (currently 8.19).

Symptom-wise, this is where I get conflicted. I definitely deal with fatigue and brain fog, but I honestly can’t tell how much is kidney failure versus my terrible sleep schedule, ADHD, stress, etc. I get occasional nausea, but only maybe once every couple weeks for a short period.

Though I also wonder if I’ve slowly adapted to feeling worse and just don’t realize how bad I actually feel anymore.

Reading experiences here has made me feel like most people don’t start dialysis until their symptoms become much more severe then where Im at now. Because my labs are relatively stable and I’m still functioning, part of me feels like maybe I could realistically make it to transplant without starting PD.

At the same time, I know dialysis decisions shouldn’t be based purely on numbers. I’m also trying to weigh quality of life. PD doesn’t seem easy either. I’m in my mid-20s, in school, and not working much right now, which probably makes this the “best” time in life to do dialysis if I have to. But I still worry about the loss of spontaneity, travel limitations, lifestyle changes, and honestly even the social/dating side of having a catheter.

So some of my questions are:

For those who delayed dialysis, what made you finally realize it was time?

Did you underestimate how bad you felt before starting and only realized after dialysis?

If you started PD young, how much did it actually affect your independence/social life?

How did you weigh the pros and cons of dialysis against living with kidney failure?

Is trying to hold out for transplant realistic with numbers like these, or am I thinking about this the wrong way?

Would really appreciate hearing from people who’ve been in a similar position.

I know this topic probably gets asked a lot here, but I’m struggling with the decision of whether to start dialysis now or try to hold out for a transplant.

For context: my kidney disease is likely genetic/developmental rather than autoimmune. My eGFR stayed around the mid-20s throughout my late teens and seemed stable, so I had stopped following up with my nephrologist for a few years and neglected my health. When I finally got labs again, my eGFR had dropped to 9.

A few months ago I got on the transplant list, and I’m extremely fortunate that my estimated wait time may only be around 2 years. Before hearing that, I had basically accepted that dialysis was next. Now I’m questioning whether it’s worth trying to avoid dialysis entirely until transplant.

Since getting serious about my health again, my labs have at least stabilized somewhat:

-eGFR has stayed around 9

-BUN dropped from the 90s to the 60s

-phosphorus went from high 6s to mid 5s

-most other labs are normal or improving

That said, my creatinine is still slowly rising (currently 8.19).

Symptom-wise, this is where I get conflicted. I definitely deal with fatigue and brain fog, but I honestly can’t tell how much is kidney failure versus my terrible sleep schedule, ADHD, stress, etc. I get occasional nausea, but only maybe once every couple weeks for a short period.

Though I also wonder if I’ve slowly adapted to feeling worse and just don’t realize how bad I actually feel anymore.

Reading experiences here has made me feel like most people don’t start dialysis until their symptoms become much more severe then where Im at now. Because my labs are relatively stable and I’m still functioning, part of me feels like maybe I could realistically make it to transplant without starting PD.

At the same time, I know dialysis decisions shouldn’t be based purely on numbers. I’m also trying to weigh quality of life. PD doesn’t seem easy either. I’m in my mid-20s, in school, and not working much right now, which probably makes this the “best” time in life to do dialysis if I have to. But I still worry about the loss of spontaneity, travel limitations, lifestyle changes, and honestly even the social/dating side of having a catheter.

So some of my questions are:

For those who delayed dialysis, what made you finally realize it was time?

Did you underestimate how bad you felt before starting and only realized after dialysis?

If you started PD young, how much did it actually affect your independence/social life?

How did you weigh the pros and cons of dialysis against living with kidney failure?

Is trying to hold out for transplant realistic with numbers like these, or am I thinking about this the wrong way?

Would really appreciate hearing from people who’ve been in a similar position.