NxStage vs. CCPD

[wcmjt]

Hi To All,
I am a 60 yr. old married male (great support from my wife) who has known I have Polycystic Kidney disease for close to 25 yrs.  I am now in stage 4 GFR and lately (last 2 1/2 yrs.) my creatinine has been steadily going up.  My last visit to the Neph. it went up .3 in 3 mos and I am being told when it goes up another .4, I need to consider having a fistula put in (assuming I do hemo).  Although I knew this was coming, my wife and I are still in the stage of bewilderment and fear. 
My biggest concern at the moment is trying to decide whether to do CCPD or do home hemo using the NxStage machine.  I am kind of leaning toward the NxStage because of less restrictions in lifting of heavy objects, having one day off a week, having less supplies to store (by using the PureFlow system), diaylisizing for approx. 3 hrs/day and having less dietary restrictions.  My biggest concern is the complexity of doing hemo (due to me being a newbie to dialysis), and getting used to the needles (my center trains you for buttonhole). 
As far as CCPD goes, I think it would be easier to learn, less complicated, but my concerns are: would I be able to sleep with the machine hooked up, lots and lots of supplies, weight lifting limits (I was told the limit would be 30lbs. that would put a crimp is some of my important activities), and peritoneal infections. 
Since I will have to make a decision soon (at least about whether or not I should get the fistula) I need your help.  Any and all of your input would be appreciated.
Looking forward to your help.
Bill and Mary Jane

[Red from Canada]

Hi Wcmjt.    I have been on CCPD since March and I find it very easy and comfortable.  I am on what they call a tidal program, because I was having some discomfort with complete drains on my 5 cycles.  However, my Neph put a fistula in 4 years ago, as that may be necessary at some point.  iT IS GOOD INSURANCE!  The peritoneal dialysis is much less restrictive on diet and fluid and being done overnight while you sleep leaves your days free.  We travel in our Motorhome with the cycler too.
     Hope this helps you.  Good luck with what you decide.

[wcmjt]

Hi Wcmjt.    I have been on CCPD since March and I find it very easy and comfortable.  I am on what they call a tidal program, because I was having some discomfort with complete drains on my 5 cycles.  However, my Neph put a fistula in 4 years ago, as that may be necessary at some point.  iT IS GOOD INSURANCE!  The peritoneal dialysis is much less restrictive on diet and fluid and being done overnight while you sleep leaves your days free.  We travel in our Motorhome with the cycler too.
     Hope this helps you.  Good luck with what you decide.

Thanks for the reply.  Since you don't presently use the fistula, is there much in the way of "upkeep" of it.  It sounds to me like having one would be a good idea, even if I decided to do PD.  That way if I wanted to change to Hemo, I would be all prepared.
Bill

[Ohio Buckeye]

I'm on ccpd and it was an easy decision for me and have no regrets.
Having dialysis while I sleep is more convenient.
Fluid intake and diet is less restrictive and I sometimes hear
about people's bp dropping or potassium dropping too low on hemo.
And the biggy, I hate needles and prefer my blood to stay IN my body.
I have no hemo access and pray to God I never need one.

[Ginger]

I am 62 and was on PD for 2 1/2 yrs until I had a nephrectomy to remove one of my very large PKD kidneys. Following the nephrectomy, I did hemo through a fistula I had had placed in preparation for the nephrectomy. I was planning on returning to PD when I received a call for a kidney and had a transplant the beginning of April of this year. Of the three treatments, I find the transplant to be the most natural and normal like. Otherwise I really preferred PD over Hemo as I had much more flexibility and a less restricted diet. I did the CCPD at night and had my days free. I was able to work while on PD and that involved lifting patients in a hospital, and since I was dry during the day, lifting did not seem to be a problem. 

[wcmjt]

I am 62 and was on PD for 2 1/2 yrs until I had a nephrectomy to remove one of my very large PKD kidneys. Following the nephrectomy, I did hemo through a fistula I had had placed in preparation for the nephrectomy. I was planning on returning to PD when I received a call for a kidney and had a transplant the beginning of April of this year. Of the three treatments, I find the transplant to be the most natural and normal like. Otherwise I really preferred PD over Hemo as I had much more flexibility and a less restricted diet. I did the CCPD at night and had my days free. I was able to work while on PD and that involved lifting patients in a hospital, and since I was dry during the day, lifting did not seem to be a problem. 

Thanks for the reply.  I was told that if I did PD and was "dry" during the day, I could lift more than 30 lbs.  Does being dry just depend on how much dialysis you need ?  How about infections ? have you had any big problems with that when you were on PD.  I am planning on getting on a transplant list as soon as I can.  I assume when you talk about hemo, you did in-center, not home hemo.  Nice to talk to a fellow PKD'er.

[Chicken Little]

Hi wcmjt!

I've done hemo, with a neck catheter, CAPD, CCPD.  For me the only benefit of hemo was not having to administer it myself.   I feel 1000% better on CCPD than I did on hemo.  My test results are also better on PD. 

My limit on lifting has always been 10 lbs though.  30 would be great, but having already torn my peritoneum once, I'm sticking with 10.   

Doing PD is very easy to learn and do.  I'm not sure I would attempt home hemo until I had done some time in center and learned more about it. 

There is lots of good info here though.  Dig in.    

[Ohio Buckeye]

There are a lot of precautions to take to help prevent infection.
A clean setting where you do the pd, 2 min. handwashings with anti-bacterial
soap, using hand santizer, some people keep pets out of room, an anibiotic cream
is put on access site daily to keep it germ-free, keeping the access site clean and
covered with a clean gauze.  Some of these things I'm sure are necessary with
a fistula or graft also.  I wipe my table off with a cloriox wipe before I set things up.

[Ginger]

Bill,
Being dry during the day does depend on how much dialysis you need. I was able to get all I needed done during the night. I never had any problems with infection during the time I did PD, nor any other problems. The hemo I did was in-center as it was to be temporary until I could return to PD. If I had had to stay on hemo, I probably would have tried to get on NxStage as there is a training facility for it here. Getting on the transplant list should not be a problem for PKD people as they are basically healthy except for the kidney failure and tend to do very well with a transplant. PD can be a good first choice as it can be started very soon (within 1-2 wks of the catheter placement). A fistula needs a couple of months or more before it can be used, but if hemo is necessary a chest cath can be placed for immediate use. PKD failure tends to move slowly enough that there should be time for whichever type of dialysis you choose.

[cev]

Hi Bill,
My Husband did PD for a while, he had previous abdominal surgeries so that created problems with the PD cath. placement and the internal scaring did create other problems.  There are a lot of supplies to deal with.  He was lucky that the bathroom is a few feet from the bed so the night PD was not a problem, drain line went to the toilet and if he had to pee during the night he could without disconnecting.   There was always the worry about infection, and no swimming.   He is now on NxStage and that give him better clearance, it does consume a lot of time,  ~ 4 hrs each night he is on (on 3 off 1 on 3) with a mature fistula, good buttonhole and good training NxStage should be good for you.

[jbeany]

PD wasn't an option for me, so I'm now on NXstage.  The machine is relatively easy to run.  There are a lot of steps involved, but it does become routine very quickly.  I'm doing 5 days a week on it - actually a 3 on, 1 off, 3 on, 1 off schedule that varies my days off every week.  I've hardly any food restrictions because of how well the NxStage works.  I still have to be careful with fluids, but even that isn't as bad now that I'm on so frequently.

Just remember, this doesn't have to be a permanent choice.  If you start on PD and it doesn't work well for you, can then move on to hemo.