Polycystic Kidney Disease (PKD) Support Group

I had a bilateral nephrectomy post transplant because I continued to have infections in my native kidneys. it was not an easy surgery but I benefitted more from having the kids removed than I did from the transplant.
as for dialysis, the fear of it is far worse than the reality. because you will undergo nephrectomy PD is probably out of the question.
with the loss of one kidney you may lose some ability to produce urine, in which case you may need fluid removal during dialysis. if you continue producing urine in normal amounts you may not require fluid removal because your remaining kidney will continue that function.
if you have any specific questions I will try to answer.

still have my kidneys but i am on dialysis. When my kidneys failed i didn't know what it was till i went to the hospital. They put me in and started dialysis immediatly. For whatever reason my heart was really weak at the time but after a week of dialysis i felt better than i had for about a decade. Since then i have been on dialysis for 2 and a half years, had a stent put in my heart and am waiting on transplant, the heart was a big holdup. Do i feel better? Not as good as before the kidney trouble but then i am a decade or two older now but i rode my bicycle (my big hobby) 65 miles yesterday. There is hope and while you may be more or less active than me kidney disease is not the end of things.

Tami,
Your comments make perfect sense. Feeling empowered when a disease usually makes you feel under siege must feel amazing. And while I haven't had a nephrectomy (yet), my transplant team wants to remove my natives at the same time as they do the dual liver/kidney transplant, provided all is going well during the surgery (Mayo is one of the few centers that will definitely consider removing the natives at the time of transplant, if nothing else so you can avoid further surgery which can be very hard on the new kidney).

If the nephrectomy will put you into renal failure you should be able to be listed pre-emptively. My nephrologist has fair number of PKD patients who have been listed and in some cases actually transplanted (deceased donor) above 20% function due to the need for nephrectomies for severe pain and other serious complications (most have been at Johns Hopkins). I would insist on the referral to the transplant team now, as well as the referral to the surgeon so you can make a well informed decision. Some further testing (e.g. iothalmate clearance) to determine your actual glomerular clearance rate will also help with the dialysis decision. The nuclear scan only showed how much each kidney contributes to the whole; the iothalmate clearance will show to the best possible extent what that whole is (much more accurate than the MDRD and Cockcroft Gault formulas or the 24-hour collection).

As for dialysis, if plunged into renal failure, hemo by catheter is obviously the only immediate option, but otherwise if given the choice, mine would be PD. You may be able to have a catheter placed the same time as your nephrectomy since it's abdominal versus retroperitoneal. Plus there are fewer fluid and food restrictions!

Good luck with your decision.
Gentle hugs,
Ruth