Yanked into a New Way of Life...
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.
https://youtu.be/l43-84hWG64
If the cycler's too much of a pain ... at the moment, we've got choices.
Right now, dialysis is a hassle, but far from the worst one. Our biggest hassles are DH's fluctuating BP, cognitive abilities, and stamina. Those are the issues that keep me near-housebound. For now, at least.
There's been a bit of drama. In this past week, we found his mentation and stamina issues (and overall health risk) are further exacerbated by out-of-control blood pressure.
He has orthostatic hypotension (where position changes BP drastically), of a sort. Standing makes his BP dangerously low, and his pulse rate is way high. He's had an ER visit and a hospital overnight for this.
He's been taken off of all BP-lowering meds and placed on Midodrine, which raises it. So now he bounces between way-high and way-low all day, depending on what he's doing.
Current *theory* is that diabetic neuropathy's the culprit. We're also watching fluid intake more closely - we still don't know whether he's over-hydrated, dehydrated, or both,
DH's incapacities are primarily cognitive. He can't plan steps, or "connect the dots" well. He can learn various steps in isolation, but putting them together may never happen. His other issue is stamina, which also affects cognition. Many times, he must stop in the middle of any given task and ask me to complete it.
I am trying to teach him. He's learned some, but again, the logic still escapes him. When I asked about the clinic offering him retraining (assuming he improves), I got blank looks.
I feel that I can't leave him alone in the house for more than an hour, and I try to keep errands down to below 1/2-hour. Sometimes he'll be fine for much longer. Until suddenly he isn't.
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.
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.
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.
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.
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.
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.