My husband's stroke deficits and energy levels dipped sharply over the summer. Despite (or because of?) my nagging, he refused to get himself checked out.

About 3 weeks ago, he became very ill, indeed. Ambulance ill. Nine-day hospital stay ill.

After much confusion about contradictory test results, one verdict came in: end-stage renal disease. Heart will also be looked at, later this month.

We're hip-deep in training for in-home peritoneal dialysis (PD) - the best dialysis mode for him. He's getting stronger, but deficits are still below his pre-hospital baseline.

At some point, he *may* be able to perform his own exchanges. Right now, however, he's simply not able to learn. Cognition may improve over time - but it also may not.

Hence, *I* will be performing dialysis exchanges for him, 4x a day, 7 days per week. There is no respite available for in-home PD - I only just learned that a couple of days ago. Still, in-home PD is what we would have chosen, anyway. Better outcomes, more flexibility and easier diet.

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Yes that is a real issue, confounded, as its next to impossible. When my PD patients were hospitalized some nurses knew how to do exchanges but many times the family member assisted. But this could not be the case where you live.

As as far as if you are incapacitated your husband’s nephrologist can order a temporary catheter placed and then perform hemodialysis in center. Speak with your home training nurse about your concerns & speak to the nephrologist as well during your husbands monthly trip to the dialysis center for monthly labs and clinic days. To prepare, ask the MSW at the center to help you apply for county senior transportation so you will have that in place as a backup.

If if he ever is hospitalized try to get him a bed on the renal unit as chances are the staff know how to do exchanges.

PD is the best treatment for ESRD in the long run for reasons you cited as well as less taxing on the cardiovascular system. Hang in there - training on the cycler is much easier after you’ve been trained in manual exchanges. Once he is on CCPD you will have more time but realize he may need to do a daytime exchange depending on his PET results.

Also it can take months of dialysis in any form for many patients to “get better” - usually after about 2 months patients start feeling stronger. It will take time before the toxins in his blood get better. Don’t expect overnight results- many folks do. I told my patients they should start to feel better in about 2 months of consistent dialysis. His mentation deficit could be exacerbated by ESRD & fogginess associated with uremia.

*Wake him up during training and teach him how to do the procedure. He should know how to, Confounded. And if in a few months or sooner he gets better there is no reason why he shouldn’t be taught. In that case, ask your PD nurse to make time to have him back for re-training. Medicare pays for this. His PD nurse should have equipment there for teaching the procedure on a dummy so husband can get the feel of the twisting, clamping, etc.

*Sorry I didn’t realize he was incapacitated due to his stroke - but hubby should still learn the procedure with you for visual support until he *may* be able to perform exchanges.

We're (well, I'm) almost done with manual (CAPD) training. In several weeks we'll start on a cycler (CCPD). Over time, I guess we'll figure out which modes are best for us.

In the midst of all this, I caught a nasty cold. While I can function around that, it reminded me that more serious illness and injury are possible.

That's when I learned that NOBODY here in the Bay Area (at least, not with our insurance) does peritoneal dialysis respite, in-home or in-center. So I need to find some kind of backup - not for respite, but in case I'm truly incapacitated.

DH has pretty much slept through training. But now he's starting to show some interest in the poking-'n'-prodding being done on his behalf. I'm encouraging this. After we get into a routine, I plan to have him read the steps to me as I go, then maybe perform bits of it.

Over the weeks, we'll see if he regains enough clarity to be able to self-dialyze when and if need be.

Confounded and her hubby are both quite young. I think they will adapt and be able to do this, particularily if they have the kind of good support someone like Shane could give them.
For myself, were it needed, at this time in my life I would not be accepting dialysis. I remember so many patients who would attempt to refuse that and say they would prefer to move on, were quite elderly and ready, and doctors would attempt to scare them into it with "That is a very bad way to go" which, in fact, it is not. Comparitively. DollyMe below lists the costs. That is certainly an issue for me, because honestly I am contributing little to the system at this point, and poor Social Security has had to pay out much more than I paid in already. But more than that, for me the issue is just being "ready" more or less. I mean not "ANXIOUS" to go, but ready.
For those younger and not ready, patients often do very well with this for years. It is an adjustment. There can be infections; but they get very adept and very smart over a short period of time. Wishing Confounded and hubby great good luck. It is going to seem daunting at first. Take it a step at a time.

My step-father did CCPD for 2 years, it got to be too much for him and his wife as he is totally deaf, and, when the machine would go off during the middle of the night he wouldn't hear it and she would be awakened, very stressful, on her.

He now goes 3 times a week to a dialysis center, works better for them. He has been on dialysis for 6 years, and is 90. So far his medical bills have averaged 1.5M per year, mostly paid by Medicare. Outrageous.

My best to you and your husband.

There is another way to do PD and that is using a cycler at night ( called CCPD - continuous cycling peritoneal dialysis). The machine is timed to drain him of the prior exchange and then re-fill and dwell time in between. Avg time on the cycler is about 8 hours overnight. Ask your PD nurse about this.
I used to teach patients how to do PD as well as home hemodialysis.
The nurse and nephrologist work together to establish what % dextrose to use depending on the results of the PET test which is usually done 4 weeks after training has been completed. If you have further questions feel free to PM me.
Also, make sure hubby keeps up his protein supplements and protein intake, as the body loses protein from PD.

We are both 62; not that far past middle-age. We both retired after his "mild" stroke in 2011.

So far, he's in better spirits than I am, and all in favor of dialysis. If heart issues don't preclude, he may be eligible for a transplant. At that point, more decisions will need to be made.

Family is supportive, but in no position to do much. However, I'm very grateful that my local SIL is taking care of my parents-in-law, who are still in the process of selling their home. We were supposed to help them, too, but between my husband's decline and this latest development, we've been no help at all.

We'll be discussing POLST and other issues with a "Life Planning Nurse" after he's had 90 days of treatment. Hopefully the medical not-so-merry-go-'round will have slowed by then.

Dr. Atul Gawande's book Being Mortal would be great for you to read and discuss with him at the earliest time. This book deals with the realities of end of life care and the consequences of interventions. You have so much on your plate all at once, but this is a topic that needs to be addressed soberly and quickly.

You do not mention ages. You also will need to consider that the in home peritoneal may well be temporary. Would he wish to have dialysis moving forward. I myself would not at age 77; I would take the good drugs and be on my way. We are all different, but if you have not discussed this it is time do to so. So sorry you are going through this. Is there any family support.

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