Starting peritoneal dialysis!!

[cruze21]

I am starting Peritoneal dialysis training tomorrow, does anyone have any advice, that I might need to know!!

[Jayhawker]

Another person posting in this forum just started PD training this past week. She has been sharing pretty much daily regarding what she's experiencing as well as posting pictures of her PD supplies and cycler machine. I'm sure you'd find her posts to be of help. Just scroll down through the post topics and you'll find her posts.

Marj

[Jayhawker]

Best wishes! And, please let us know how it's going for you.

Marj

[mhawk123]

Relax, enjoy the ride and listen. Repetition is the key! You got this....

[OperationKidney]

I've been on PD since September and I love it (well, as much as one can love being on dialysis, I suppose)! It can be a pain in the butt setting up the machine every day but it's worth it, because it lets you get your life back. I've been able to attend school again, go back to work part-time, and volunteer at the local hospital!

Wishing you the best of luck!

[Jayhawker in reply to OperationKidney]

Thanks for sharing your experiences with PD! It's very encouraging. I'm still in a holding pattern and not yet on dialysis. I had expected to be on dialysis sometime this past fall but there was a modest improvement in my renal function. And, for 3 of the past 4 months my renal panels now show me to be at the very bottom of stage 4. Consequently, it may be some time before I get to dialysis . . .

I'm so glad to hear you're able to go to school. (I'm a university professor and so am definitely pleased to hear you're feeling well enough to continue your studies

Jayhawker

[OperationKidney in reply to Jayhawker]

I hope your renal function continues to improve!

[Jayhawker in reply to OperationKidney]

I'm actually thrilled that me GFR is back to 15-16! My nephrologists thinks this could mean another 1-2 years before dialysis. Even that is wonderful news!!

Jayhawker

[Bunkin in reply to Jayhawker]

I’ve been stage 5 now for about 4 years now. Started at GFR 12, now down to 8

[Jayhawker in reply to Bunkin]

That really is amazing! How are you feeling at this point?

Jayhawker

[Bunkin in reply to Jayhawker]

Some days are good, some not. Fatigue is the main thing! Last labs my numbers were better! Creatinine down, phosphorus and potassium in range. GFR up 1 point. I’ve now started a plant based diet but just started and labs are next week I think. Not sure if any changes will happen.

[Jayhawker in reply to Bunkin]

For me it's primarily fatigue too; although, the nephrologist I had to shift too after moving last summer hasn't impemented the full anemia treatment plan started by my first nephrologist so I suspect that's a major part of my fatigue. I'll finally see the nephrologist tomorrow m shifting to on May 30th so I'm just hanging on until that appointment at this point.

Myfirmee nephrologist administered EPO injections as needed as well as prescribed an iron-based phosphorous binder (Auryxia) which I take daily. The two together had my severe anemia under effective treatment.

The nephrologist I'm leaving has only had me taking the Auryxia but no supplemental EPO injections. I'm sleeping a lot-- 12 to 14 hours a day. My renal panel data has actually shown some improvement since the move last summer. My electrolytes are always in check. So my creatinine, GFR, bun and hemoglobin are the data points that aren't in good range at this point. I also rarely have fluid retention.

So it may well be some time before I'm put on dialysis as well.

Anyway, thanks for sharing a little more about your data🐶

Jayhawker

[Bunkin in reply to Jayhawker]

Hey me too! He’s checking my iron next labs. Don’t know why he hasn’t done before as I’m always anemic

[Unityismine in reply to OperationKidney]

Thank you so much for this, Tess! I will start on PD soon and now i have someone who is on it to talk with!

[OperationKidney in reply to Unityismine]

I sent you a direct message!!

[Bunkin in reply to OperationKidney]

You are awesome! I hope I have your attitude as I will start mine soon😀

[Dakotablue61]

I started PD almost 3 years ago. Just make sure you pay attention to how you keep your area clean and sanitized. You want to make sure you stay away from anything that may cause infections. Because of surgery last year, I am now doing in-center dialysis, but may go back to PD end of this year.