PD Question(s) from Another Newbie Family Member!

[lilsis2018]

Hi All, and thanks for being here.

My brother (lives independently in another state) is just about to finish with his PD training & switch from HD -- he has HD tomorrow, and the home visit is scheduled for Wednesday AM with CCPD to start Wednesday night.  That's the schedule, anyway.  It's been a very long training process because the PD side of things had been incredibly short staffed, so most of the time, he was only getting one 2 hour training session once a week.  Not sure if that's normal, but it's been aggravating as heck to me.  Not surprisingly, I have a question or two.

I don't know exactly what model CCPD machine he will be using, but based on the literature, it's a Baxter HomeChoice.  I wasn't able to find the most recent user manual he received available online, but I did find an older manual that seems pretty close to the physical manual he's got, so I've got a relatively decent if incredibly basic handle on the machine.

My first question relates to something that's in the older (2007, IIRC), and current manuals:  it says not to turn on or use cell phones near the cycler.  I'm freaking out about that -- like many people (at least in the US), my brother only has a cell phone -- no landline -- and because of his health issues, he takes his phone to bed with him in case he should have a medical emergency.  Does anyone have more info about that?  His finances are tight enough that I really don't know how he could afford $60+ a month for a landline.

My second question is probably pretty basic:  does he have to stay in bed laying down the whole time he's hooked up to the cycler?  He's not been given the details of his PD schedule yet, the in-clinic training he's done have been while he was sitting up, and one of the PD trainers suggested he get a cart so he can move around (within distance of the drain) while hooked up.  He will be doing PD while sleeping, of course, but it may not be practical for him to be in bed for 9 hours straight, particularly when he gets back to work.  As I said, one of the trainers made it sound like it would be OK to hook up & move around some before going to bed, but I'm guess looking for real-life experience.

My third question is does anyone have any suggestions about how he can expect to feel transitioning from HD to PD?  He has tolerated clinic HD very well, IMHO -- once in a while, he doesn't feel particularly great right after, but most of the time, he feels fine & often goes grocery shopping, to doctor appointments, runs errands, goes to the movies, etc. straight away.  He is very impatient to get back to work (he's been off since mid-October) -- my suggestion has been to give himself 2-3 weeks to get a get used to the switch, but I don't know if that's realistic.

I think my final question for now is how long does it take to determine if PD is working well for him?  The reason I'm asking is to get an idea of how long until he can get his Permacath pulled, which he's very much looking forward to getting rid of!  One trainer said it's usually 10-14 days or so after the trransition, which is exciting for him, but if that's not realistic, I'd like to start helping him adjust his expectations now.

Thanks in Advance,
LilSis

[Charlie B53]

I placed a fish tank table along the wall just inside my bedroom door.  It was right across from the foot of my bed, had plenty of room for my Baxter Cycler and workspace plus that whole lower shelf Ikept that huge box of cassettes and a couple other supplies.

Cassettes come in three prong and 4 prong depending on how many bags of solution are used.  IIRC the 3 prong had much longer patient hose, almost 25 feet vs the 4 prong only 15 foot hose.  So with the 3 I had enough hose I could easily walk to the bathroom.  PLUS he can add a 25 foot extension.  This gace me run of half the house almost.

The clinic won't admit it, but he can order line caps, there is a larger cap for the machine hose, different than the patient cap.  Once the machine goes into 'Dwell' he cap clamp, cap-off his and the machine hoses, and be free to get about the house, fix dinner, do laundry, whatever.  He will have to be back with CLEAN HANDS to reconnect as the machine WILL Alarm once it tries to cycle.  So 'No', he does NOT have to stay in bed the whole time connected to the Cycler.

BEWARE, that hand cleanliness thing.  It is VERY CRITICAL.  Even after hand sanitizer our hands are not sterile.  Even the slightest touch of a fitting can, and will, cause a terrible infection that will have him in the ER long before morning.

Ask me how I know.   My infection would not die.  After 3 months of near constant antibiotics we had to remove my PD cath.  I've been on Hemo well over a year already.

Take Care,

Charlie B53

[kickingandscreaming]

Don't worry about the cell phone.  I use mine in close proximity to my cycler and no issues.

You don't have to lie down during the cycler.  As Charlie said, there are generous extension lines that make it possible for me to walk around almost throughout my apartment.   Just make sure you don't trip over it all.  I start my cycler at 7:30pm (my program is 12 hours) which is about 2 hours before I go to sleep.  During that time I tend to read on my laptop in bed, but I could just as well be moving around doing something else.

Transitioning from HD to PD was a piece of cake.  PD usually leaves me feeling very normal in contrast with HD which can knock you for a loop.  PD is much gentler and slower and more frequent, and the body appreciates that.  But having said that, any transition is a change and any change brings a need for adjustment.

[lilsis2018]

Thanks for the cell phone info!  When the fill-in PD nurse did the home visit today, he showed her the manual & he didn't know anything about the cell phone part.


And, thanks for the clarification about not having to lay down the whole time.  Back in February when he first decided to make the switch, he had been told it would be 10-12 hours, and we were trying to figure out how he could get back to work if he would be stuck in bed, what if he had to pee, and basics like that - hence the rolling cart.  At the home visit today, he was told his starting program is 8.5 hours, which is much more doable.  Actually, he's a pretty sedentary <g> kind of guy, but I'm wanted him to be able to get to the kitchen to get a snack if needed, or watch TV in the family room if he wanted, maybe throw clothes in the dryer . . . stuff like that.

LOL -- between you & Charlie, he probably thinks I'm a nag about the tripping hazard!  His balance can be an issue because of the toe amputations to begin with, and he's currently in a cam walker boot.  Finger crossed!

Good to know, too, that the adjustment from HD to PD is likely to be pretty easy.  IMHO, he adjusted amazingly well to HD & tolerated it really well.  He's fortunate that his nephrologist agreed to keep him off work for another month to give him & his body time to adjust. . . and his job has been excellent.  He's been out since mid-October & is looking forward to finally getting back -- he's less than a year from hitting full county requirement & would ideally like to keep working until he hits full Social Security.  I'm very optimistic about the former & cautiously optimistic about the later.  Fingers crossed!

[Charlie B53]

He is going to LOVE PD.  The dietary and fluid freedoms are so much greater than those imposed by Hemo.

But you got to drill into him the importance of carefulness and cleanliness while setting up and making EVERY bag connection, both to the Cycler and to himself.

Infection is NO JOKE and can be avoided with the utmost in care, always.

Watch his labs carefully.  I found my potassium dropping.  The clinic was constantly telling me to eat more potatoes, tomatos, bananas, OJ.  Wait and see how his labs go just be aware, potassium can drop rapidly.

[Marilee]

Hi LilSis - I wanted to toss a few thoughts out there, too. My hubby has been doing PD for a little over a year now. He's using the Baxter Amia cycler.

Lying Down the Whole Time? My hubby set up his PD cycler about halfway between the bathroom and where he sleeps. This gives him room to roam while tethered (he can't sleep a full 8 hours at a time). It's even close to his hobby room so he can be working in there, too. He doesn't have the cycler on a wheeled cart, just moves to the limit of the patient line length. I wanted to be sure to also mention that IF your brother needs to have more cycles and needs to get to work, he may end up with a kind of 'hybrid' situation where he uses the cycler through the night but does one or two manual cycles during the day. A manual cycle (done without the machine) is where he'd fill up, unhook and be free for a few hours, then hook up again to drain. Hopefully, he doesn't have to mess with that at work, but it's a possibility.

Phones We only have cell phones and a voice-over-IP (Ooma) box - no land line, and there's been no interference from these devices and the cycler.

Starting PD The first time they put fluid into the catheter, my hubby went into shock. He said it hurt, and he got clammy & short of breath. We were so darn scared that PD wasn't going to work for him. But it never happened again. They speculate that maybe the juice just wasn't warm enough and his body freaked out from that. It might happen with your brother - might not - but if it does, it's likely temporary. Oh, and the first time the machine alarms (loud and insistent), he needs to remember to relax and see what it needs. The alarm is made to wake even the hard-of-hearing: Scared the dickens out of us the first week, but we got used to it (turns out my hubby doesn't drain well and has to sit up to drain several times a night).

Good luck to your brother during this transition!