Failing PD for lack of pee

[kickingandscreaming]

I've been on PD since Dec. 2015.  When I began, my clearance was very good and I still had lots of RRF.   Now, since 3 recent hospitaliizations (for flu and heart block) I barely pee at all and I am getting inadequate clearance.  My team is threatening to send me to hemo.  Frankly, I'd rather die than spend the rest of my days tied to a chair, in center.  I don't have a fistula and don't intend to get one.

What they're doing in the interim, is to keep raising the volume of my fills.  I already do 7 exchanges/day  (1 manual, 5 cycles on the cycler and 1 final fill that I dwell for about 1.5 hours).  I'm dry during the day and I can't tolerate the feeling of being so over-stuffed when I'm full.  They want to raise the volume from an original of 1800ml to now 2200ml.  I already have trouble breathing and eating when full.

I feel so hopeless. This non-clearance business has been going on now for several months.

[Charlie B53]

I don't understand why your Neph is not willing to  increase the number of exchanges by reducing the dwell time of each exchange.  The higher concentration of solution sugar in doing this will increase the fluid pull-off.  Your fill volume can stay at the comfortable level allowing you not to full so stuffed.  Doing this you can increase the total volume of solution used.  Together this should increase your adequacy.

I am not a Dr.  Almost a Scientist though.

I was on PD for a little over 3 1/2 years until that nasty bug almost did me in.  Losing my PD Cath and using this perma cath has me learning a whole lot more than I ever wanted to.  But learning isn't necessarily a bad thing.  I have found that since I am normally one of those 'Early Risers' up before Dawn, I don't mind going in for that first shift in the chair.  I take my laptop, and book so I easily occupy my time. 

I also learned the benefit of doing Hemo is I have my evenings totally FREE again!  This is a biggie.  I am not tied to my Cycler any longer, NIGHTLY.  And I only have to sit in that chair three times each week.

Needle-phobia may still be a problem.  But that isn't here, YET.  The perma cath is soo neat, NO NEEDLES!

I have watched a couple of the others get 'Needled' in their fistulas that were very well developed.  It actually looked easy.  Such a big target it's no wonder.  I don't have a problem with bloood draws, as long as they are using those little butterfly things.  My problem is when they are attempting to stick an IV in.  That ain't happening very well.   But a very well developed fistula?  That looks to be almost a no brainer.  So I had my surgery done and my fistula is growing.  This is going to take some time.  But I GOT time. 

So it seems as though most of our problems are much the same mental block.  I am working on mine.  I never thought I would make it to this, but I am.

You need to think about your purpose.  What do you think you have yet to accomplish?  There is a whole world fulled with people you have not met yet.  I happen to Believe that there is a plan.  One that I don't know, but I still have a role to play.  Things to do, People to meet,  Things to Learn, and Things to Share.  So I will do what I must to ensure that I stay here to do my part.

Think about these things.  See what you think.

[kickingandscreaming]

[quoteI don't understand why your Neph is not willing to  increase the number of exchanges by reducing the dwell time of each exchange.  The higher concentration of solution sugar in doing this will increase the fluid pull-off.  Your fill volume can stay at the comfortable level allowing you not to full so stuffed.  Doing this you can increase the total volume of solution used.  Together this should increase your adequacy.
[/quote]
 
What do you base this theory on? I'm already doing 7 exhchanges/day.  Averyage dwell time is under 1.30 My clearance is laughable, except it isn't funny.

[Michael Murphy]

While I am a strong advocate for fistulas there is no doubt that the first year is bad until the fistula is well developed.  If your choice is Hemo or dead get a chest cath and,live. I had a tiny women sitting next to me for several years and used a cath the whole time.  She had been on dialysis for over a decade.  She has gone on to a better place, a house by the beach in Delaware.  Last I heard she is going strong and enjoying being out of New Jersey,  she loves the beach too.
The fistula is safer but if you are going to stop dialysis because of the needles the cath is a better choice.  Charlie my advice is for the first year lidocaine the hell out of your arm and don't watch the needles going in,  in my case the are 14's and the couple of times I have seen them going in they look like the Holland tunnel going into Manhatten.

[LorinnPKD]

Good golly.  Perhaps a Holland Tunnel joke is not the most helpful or tactful idea when addressing someone who is understandably concerned about needles?

I feel for you, K&S.  I honestly do.  PD was unfortunately never an option for me because it's typically not helpful in the long term for PKD patients.

I'd thought hemo would be worse than dying, but it really isn't so bad.  I promise.  I'm 41, and if I can face a lifetime of this, I believe that anyone can.  Especially someone as strong as you are.

[Michael Murphy]

Actually the point is don't look the damn things look much worse than they are.  I watch them coming out no boggy, but I avoid watching them go in at all costs.

[Charlie B53]

I did PD for slightly OVER 3 1/2 YEARS.  My dwell times averaged only ONE HOUR each.

I had a whole month supply of manual bags just delivered when I started using the Cycler.  So I actually had TWO months worth of supplies lining the halls.  When the manual supplies started getting near the expiration date, AND, I am such a cheap SOB that I was sickened at the thought of all that expense going into the trash, I got permission to start ADDING a 2 liter manual bag to the bags I was using on my Cycler.  My Nurse and I had to get an OK from the Neph to make even this small change in prescription.  He didn't have any problem with it.  So we INCREASED the total fluid used, DECREASED the dwell time even further, and added one more exchange.

We NEVER increased the amount of fluid held.

The resulting improvement in Labs made the Dr reconsider my original Cycler script, and made the change permanent.

This CAN work for you.  Your team just needs to realize how MORE, Shorter, dwells can work.

How is that thing go.  Been there, Done that,  Bought the shirt and wore it out.

And 'Ditto' the Perma Cath.  Easy Peasy.
That's what I'm using right now.  And using a perma cath will give you the freedom to have your sweetheart puppy in your lap ALL Evening.