Should I do PD

[marlinfshr]

I just introduced myself in the introduction center so am now looking at getting some questions answered.

At the moment I am doing in center HD with a catheter in my neck so am looking at my options. I have an appointment with a PD surgeon at the end of the month for a consultation.

How uncomfortable is the PD catheter and how big is it? I'm not liking the HD one that is in my neck/chest. Can it be hidden or is it always noticeable?
Also in regards to manual exchanges, do you get an uneasy feeling in your stomach? I am around boats  a lot and was wondering if all that liquid sloshing around might make one nauseous.

I'm thinking of doing manual exchanges and am wondering what kind of PITA they really are. However, I don't want to be hooked up to a machine at night and my life is far from routine. I worked on sportfishing boats up until this issue so I had to quit my job because 15 hour days on the water don't go well with a dialysis schedule. I am trying, though to continue doing some things. I may ride along on some days or fill in perhaps here and there. I am still trying to live my life as close to as it was before. My wife also does not drive so I have to pick her up during the week at work between 2 and 3 in the morning. I'm stating these things because I don't see a time slot to be still for 8 hours or more.

Can these exchanges be done while sitting in a car? How about a boat? How long does it take each time to fill and drain?

The other option is to continue with the HD because the 6:30 - 10:30 shift 3 days a week still gives me my days and I feel fine when done. However, towards fall I like to go for drives and short trips that may be 1 to 3 days. I usually don't decide to go until the day before. So there goes any way to hook up with another dialysis center. Another issue is this "temporary" catheter in my neck which worries me about an infection or getting tugged on, but I really don't want a fistula with constant needles and buzzing.

Any ideas? I know these are a bunch of questions but I am trying to research what would be the best options for me and I figured the best ones to ask are those going through it. Not the nurses and doctors who don't actually have to live with this.

[Henry P Snicklesnorter]

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[Sydnee]

I can't say whether it will work well for you but My husband does PD.
In January of 2012 here started dialysis with the chest catheter and in center hemo not fun but not painful. He got a fistula right away and started using it, painful and several time techs made his arm blow up like a balloon.
In august he started PD. the first month he was on all manual. then he switched to cycler at night and on days off. Ed works 12 and a half hour days and takes a 40 minute exchange break in the middle of the day. Then hooks up to the cycler at night for 8 hours and 10 minutes. But even when he is on the cycler he can move around and do things around the house.

You can set the cycler to do pauses so you can do an exchange unhook and go about what ever you are doing. Then come back later and continue your treatment.
Ed has done manuals in the car several times without problems. He is active plus we have 4 kids and they are active so we are always doing something. Like tonight the 2 teens are going to a dance after Ed gets off work we will meet in town for dinner he'll pick up the little kids and head home, hook up to the cycler that I'll set up (before we leave) so he has enough time on it.
He does have some drain pain occasionally but only when it's nearly empty. He doesn't say it sloshes around at all. He carries 2500 ml around all day. There are smaller amounts.
The only problem he has really voiced is the catheter placement. He says," I know the surgeon wears pants, why would he have the catheter exit at the belt line?" He since surgery has to wear suspenders so his pants can ride lower.   

[Joe]

I don't have a whole lot to add to what Henry and Sydnee have said; My cath is just below my beltline and is about 18" long. I keep it tucked away in a stickman belt and don't even know it's there. I do a combination of manual and cycler to get the dialysis I need, it's a lot but it works for me. As I'm still doing manuals, I have done exchanges just about everywhere without any problems. The key thing is just to keep the area you are working in clean. I usually allow 40 minutes to do a drain and fill, just to be sure I'm empty before I take in another 2L of fluid. Good luck and let us know if we can help.

[MaryD]

I once shared a room while doing an adequacy test with a young man who had done a PD exchange on the back of an elephant (I think in Thailand).  The PD nurses were very interested in his pre-cleaning steps and rather horrified, but he hasn't yet had an infection.  He travels overseas a lot and was doing exchanges in the oddest places.  I ran into him and his little girl a few weeks ago and he is still finding weird places to do his exchanges and still horribly healthy.

PD fluid doesn't slosh around.  The only negative I've found, is bending right over when I'm carrying a lot of fluid - weeding or the like.

[nholleger]

Recently began PD and have only done manual exchanges.  My cath is a pre-sternal which comes out just inside my left breast.  It is hidden completely in my bra/bathing suit and I chose it because of my busy lifestyle.  The doctor said you have less movement of the cath in the chest when you have a very active job/life.  If you message me at csqueen@comcast.net I will send you pictures.   

[Grumpy-1]

 i echo Henry P Snicklesnorter post.  I did PD for 3 years until 3 bouts of peritonitis required the tubing to be removed.  I'm now working towards getting another PD tube installed and back to PD.  When I was on PD, I did two manual exchanges, during the day, and 4 exchanges on the cycler at night.  Like Henry, I have done exchanges while driving, riding in a car, on motorcycle rides (had to stop for the exchange - but thinking of some wait to hang the fill bag and where to put the drain bag) my clinic isn't too happy with the environments I use, but I refuse to let kidney failure and dialysis run my life.  I prefer to adjust my life to allow for dialysis.   

To answer your questions,  The PD tubing is consealed under your cloths.  Having a couple liters of fluid, doesn't make you sea sick.  PD is uncomfortable at first until you (and your body) get used to the fluid.  Depending on how much dialysis you need (your Neph will determine that) will determine your options of doing all manuals or just a cycler or a mix of both.

For me, PD is the way to go.  Grumpy

[billybags]

First of all    I really can not add any thing to the other posts, my husband has been doing CAPD for over 3 years, no problem, 2 bouts of peritonitis.
No one has mentioned the amout of fluid box's that are delivered every month. You need a small room or a garage to put them in. There are quite a lot and they come with all the tick tacky that goes with doing the dialysis. You have to get rid of an aweful lot of cardboard and used dialysis bags. So if this is for you GO for it. My husband  had to go on hemo for 3 months after his first bout of peritonitis and he hated it. he was so pleased when they replaced his cath and was back on PD.You can always go back to hemo if you dont like it. There is a choice.

[marlinfshr]

Thanks for the reply's. It is looking like PD is the way to go and I'm glad i'm hearing some examples of assorted places where you all are doing the exchanges. This is all new to me as it was for all of you as well at some point. Right now I'm cussing out the catheter in my neck so it makes me wonder how I'll take to an even longer catheter somewhere in my abdomen, but I don't really want a fistula and have to deal with needles (esp large needles) every other day either. It seems the PD may be the lesser of two evils. A couple things I really don't like about this temporary catheter in my neck/chest is that it hurts if I lay on my right side. I also have this slight paranoia of it getting tugged on and that couldn't work out very well, considering it goes into an artery in my heart. At least I wont have that mind set with the PD one, however I can still see myself being perronoid of it getting tugged. I guess I still have a lot of thinking to do still. But I'm glad to hear that I can continue with my activities.

[Joe]

I think yo will like the PD modality, should you choose that as the way you want to go. As for tugging on the catheter; I've pulled mine several times and aside from the tugging sensation where it goes into my belly, felt nothing. The surgeon will tie it down inside you when the put it in. There are also a couple of flanges (if you will) that go inside you that keep it from being able to be pulled out accidentally. I imagine you could do it intentionally, but I think that would hurt a bunch. Best of luck with your decision!

[Grumpy-1]

Echoing BIllyBags comment about the amount of stuff you need.  I have a spare bedroom that is FULL of boxes of solution (about a month and half worth) and all the other stuff that goes with PD.  But for me I'll be glad to get back to PD.   Grumpy

[tito]

I'm storing all my boxes in a room that used to be the darkroom. As soon as I receive a kidney, it will be converted into a walk-in closet. BTW, just today got back on the list at Fletcher-Allen Hospital, Burlington, VT. Got clearance from my cardiologist after a heart attack and stent procedure in March (missed the first ceder of Passover!).

[blondie1746]

Don't panic too much about all of the boxes of supplies.  It all depends on your PD prescription.  I only use 1 6L bag a night, now.  So I have a row of boxes stacked up against the wall in my son's room.  He's away at college most of the time.  It is about 6 ft. of wall space.  I used to have to use a 2L bag for my last fill, because I had to carry fluid around during the day.  So that meant more boxes, but still not too bad.  Some people on here go through 3 or more different bags a night, or more for manual exchanges.  That means more boxes of supplies.  Everyone is different and has a unique situation.  I still prefer the night cycler to manual exchanges.  I've never had to go to a center 3 times a week, but I know I would hate it.  Had to do HD while I was in the hospital once, and I hated it!  Planning to take care of myself and do PD as long as possible.

[highway61]

As someone who was lucky to have to do PD for only a short time, I can say that it allows you to be control of your own treatment. Even when I went on a cycler, I still missed the control I had on PD. CCPD is ood if you have an 8-5 job. It works well but it isn't really not as good as PD. I used the cycler during the week and used manual drains and fills on off days.

You mileage my vary. Everyones experience is difference, though there are a number of similarities.

[JLM]

I favor the cycler as I am usually home by 8 pm.  I'm not much of a  "out of the house" night owl.  I did have to do Hemo while in the hospital after hernia surgery and my opinion was that "they" were trying to kill me.  Manuals, for me, is a pain because of the 4 hour exchanges.   Sitting in the pick-up doing an exchange in this west Texas heat is the pits.  My cycler time is a tad over 8 hours.  One has to know which method fits your life style and how it works for you.  THERE IS NO ONE WAY FOR EVERYBODY!!!!!

[CebuShan]

I chose to do Home Hemo simply because I didn't want another tube! I hated my chest catheter and didn't want another one.
My HHD is 2 1/4 hours 5 days a week. I choose the days. I usually dialyze in the evenings when I would be watching TV or a movie anyway! It works for me!
Best of luck!

[BattleScars]

I've been on PD about a year and a half. I like it because it gives me some control over my life. Cons are lots of boxes to deal with, making time out of the day to do your exchanges, having to see the doc once a month for labs and a check-up. I also find this method a bit intrusive. The nurses seem to be way into your business and want to see your house. Some people gain weight from PD, I did. Sometimes if I wear a tight shirt it's hard to hide the catheter as it tends to stick out a bit. It's not as easy to do exchanges on the road or at strange places for me. The car is almost impossible but would love to find a way. Sometimes I will feel a little drain pain but that's pretty rare. The only time I really feel the sloshing around feeling is during exercise, other than that not too much of a problem. I like being independent so it works for me.

[Grumpy-1]

BattleScars   You wrote "The car is almost impossible but would love to find a way."   Doing an exchange in the car isn't a big deal.  Can be done while moving or sitting still.  I've even done an exchange while driving.  Just make yourself a small "S" hook that you can hang on the sun visor and hang your fill bag.  The drain bag goes on the floor.  Then hook up as normal.  The time to do an exchange does that longer as the fill bag isn't as high as using an IV pole, but it works.  Then when finished, unhook, take the drain bag and dump it on the ground.  It has been said that the fluid is great for the grass or plants.   Grumpy

[JLM]

When I did manuals on a trip from TX to WI (plus the reverse trip) I used a short bungee cord on the garment hook,  I had to double wrap the cord over the hook.