pd and polysistic kidney disease

[susan parry]

i have pkd and i am at 19 gfr.  i would really like to do the pd if this is possible.  my kidney dr says its not-the nurse at the diaylsis unit said there are lots of places for the fluid to go so she didn't see a problem with it. 

i don't feel sick either - a little nauseated but i do not vomit.

i guess my question is does anyone have pkd and do pd and if so do you still have your own kidneys or were they removed?

thank you

[twirl]

I have pkd and I still have my kidneys and I still urinate some -- not much
I have been on dialysis 5 years this coming Halloween
19 gfr .... means what?
my nep doc does not like to remove kidneys even if a transplant is involved

[dh514]

I have PKD and have been doing PD for 9 months. I have not had my kidneys removed and having them removed has not been discussed.

[okarol]

I was at a Renal conference today and they mention PD being a possible problem with PKD if the kidneys have gotten so large that there's not much room for fluid in the abdomen, otherwise it should be fine.

[Jie]

I know several PKDers who did or do PD. I have done for more than 6 months of PD. My PKD kidneys are about intermediate size. My transplant centers (two) require me to remove at least one of my kidneys before getting me into the active list. Space is a little tight for PD, but it is ok. My only problem is that there is back pain if I sleep on my back when doing dialysis. Sleeping on sides is OK. When I get up, back pain is not an issue.

[Wattle]

Hi Susan,

I also have PKD. I have managed to do PD for the past four years. The kidney size is a very personal one. Your renal team will be able to determine if PD is possible for you. I was only able to tolerate 1600 fills. I carried fluid 24/7 did one manual exchange during the day and the cycler for eight hours every night. I was booked in to have my right kidney removed in August. Instead I received a cadaveric transplant on the 13th July. There was a small amount of room on my left side to place the kidney. I will now have the problem of removing the kidney down the track.

Do your research and choose the dialysis you feel suits you. It is your decision after all. I wish you luck.   

[paul.karen]

Another PKD'er.
I start training for the cycler tomorrow.  Im not sure how big my kidneys are but i sure feel them at times.  I have never had a full fill just one flush so far.  So im hopeful there wont be a problem.
Ps. Welcome to IHD

[susan parry]

Congratulations Wattle on the transplant-i will pray that it works well for you. 
I am terrified at the prospect of a transplant - at the present time i feel great but my bloodwork says otherwise.


paul.karen what does it mean "full fill-just a flush"  not sure what that means? 

thanks for writing. 

[paul.karen]

I just had my PD cath placed on 7-14.

After a week my clinic changed the dressing and flushed the cath.  I think a normal fill is about 1500/2000ml.  They used a 1000ml bag and flushed me four times.
I assume tomorrow they wont Fill me 100%.  Im not sure if they start you slow and build you up or not.  But i can let you know later in the week.
I feel lucky that i am starting on the cycler right away, due to working and conditions at work i couldn't do manuals.

[Jie]

Hi Paul,

Good for you to start cycler right away. My clinic normally starts manual for a month and then changes to cyclers. I did not want to make any change during the day and insisted starting on cycler. So like you, I started cycler on day one.

The fill amount is body size dependent. I am about average size, so each fill is 2000 ml, 4 fills a night.

[Hanify]

Once they know it's working they pretty much get straight onto it Paul.  Maybe a day or two with less, but then full throttle.

[smilindon]

my wife has pkd and has had her kidneys removed. 10/1/08, over 10lbs each. She is 4-11and 1/2 (she insists) She was never considered for pd. Her liver is also over 17lbs. and they want to add her to the transplant list 4 livers when she gets a new kidney. We go to U.C.S.D. transplant hosp. and they originally told her they would determine room for new kidney at transplant time. (june 05) 9/24/08 they changed their minds and said they needed to remove the pk kidneys for room and to let her heal up to reduce the risk for infection after transplant and all the anti-rejection meds needed. She was told at that time she was on the top of the lists and after 8 to 10 weeks of healing she would be right there. They never made the 10 weeks lie and as a matter of fact she is still waiting. We got a 7:am call on mothers day and was told to be on standby. no food no fluids, and they would let her know one way or the other if one of the two people ahead of her refused or failed. At 6:15 p.m. I finally got a duty operator who called the duty nurse at home and when she answered told us Ohhh" we were just getting ready to call you.  Yea right.  Anyway get a second opinion on pd and kidney removal, they can locate the kidney in several different places beside where old one is and most of the time don't need to remove it at all.