I’ve been recently diagnosed with Stage IV/V chronic kidney failure - healthwise, I feel fine but the BUN/Creatnine values are high and so far the other major blood parameters are well within normal ranges. As a result, I’m facing dialysis in the not-too-far future - opting for manual home peritoneal dialysis when the time comes. Right now it’s a waiting game for future bloodwork changes and obvious symptoms, basically keeping hydrated. active, and avoiding salty foods (gotta reduce those pizza cravings and avoid chinese buffets 
)
Dopers, what have been your choices for dialysis and your stories?
Have you considered home hemodialysis?
I haven’t had dialysis myself, but I worked as a “dialysis partner” to a gentleman in his 60s until he passed away last week.
He started out with hemodialysis and it was very difficult for him, leaving him nauseated and exhausted. Then he switched to manual peritoneal (I see that’s what you’re considering) for a couple of weeks, came down with peritonitis, and finally, after a pretty long hospitalization, I was able to start him on overnight peritoneal dialysis on a cycler. We began in January.
This is an overview: http://www.davita.com/treatment-options/home-peritoneal-dialysis/what-is-peritoneal-disease-pd/tour-of-automated-peritoneal-dialysis-apd-machines/t/5486
My take: Manual peritoneal dialysis requires a commitment to perform the procedure 3-4 times a day, a “clean” room, manual dexterity to handle the bags, and very good attention to detail and record keeping. My client immediately ran into trouble because he was not meticulous about avoiding contamination, and he would skip treatments. Like, a LOT of treatments. He was usually only doing 1 or 2 cycles a day instead of the required 4. His strength and manual dexterity were really not up to handling the bags and equipment, and his mental fogginess contributed as well.
After my guy recovered from peritonitis, I trained on the overnight cycler and began assisting him. Every day, I went to his home, tore down the previous treatment, provided any care he needed (changing bandages, cleaning his port, etc), and set the cycler up for that night. He usually hooked up and unhooked on his own, but if was ill or on pain meds, I would go do that as well. He wouldn’t have been able to set up or maintain the cycler on his own, but again, his dexterity, strength, and cognitive abilities were impaired.
He was very, very happy with the overnight cycler. It allowed him to have dialysis without taking up much of his day, less risk of contamination, and he found that the peritoneal dialysis was much easier on his body and mental health. He died last week–not of kidney issues, but from congestive heart failure. 
I miss him so much.
Anyway, I don’t know if that helps at all, but maybe it will help you consider whether you want to do manual or cycler dialysis. Feel free to pm me if I can tell you anything else.
Best of luck to you.
I started in office hemo on 05/26/15 - kidney failure caused by polycystic kidney disease.
I weighed my options - I love swimming. I’m in the pool 3-4x/week. That negated peritoneal dialysis. I thought about home hemo, but I don’t have a partner here to assist and the thought of sticking myself does nothing for me.
For me, in office hemo was the only way to go.
And I hate every minute of it.
I think it wouldn’t matter what kind of dialysis I did, I would still hate every minute of it.
Physically, the primary issue I have had is establishing my dry weight. I’m not a “normal” patient, in that I don’t retain fluid. I’m still drinking water like there’s no tomorrow. If I’m a tad over my dry weight, they still remove it, leaving me, well, dry. It causes neurpoathy and blinding headaches.
I will say, for the MOST part, I feel better now than I did, say, 6 months ago. I have more energy. No more naps. Once you’re on dialysis, your diet opens up. I spent two years not eating any of my favorite foods, but Saturday I was able to have a very little chocolate malt. Heaven.
Dialysis, and kidney failure as a whole, fucks with your brain. Literally. There is such a thing as “Dialysis Brain”. You forget simple words (I had been looking for the word ‘sumac’ since Saturday - it finally appeared this morning). I now write lists for everything, otherwise there will be two trips to the store. Depression is common. I’m dealing with it massively, right now (on schedule, per the dialysis social worker). You look healthy, but under your skin, it’s all messed up. It’s difficult to live up to other people’s expectations of you.
If you want, PM me.
I am a hemodialysis nurse. You can PM me if there’s anything you want to ask me.
My late husband was on dialysis for nine months before he had a kidney transplant in 1992. When we knew he would have to go on dialysis, we dreaded it. I used to pass a dialysis clinic on my way to work and I would turn my head because I couldn’t bear to look at it.
But when it happened, like most things you dread, it was doable. Not fun, not a picnic, but doable. Tolerable even. He went for five hours at a time on Monday, Wednesday, and Friday. So we could never take a long weekend. He did consulting work out of town and tried doing dialysis at a clinic out of town one time, and that just did not work.
This was in the early days of cell phones, and he had a bag phone. So he could talk on the phone while he was hooked up if he had enough battery power. It was overall grossly inconvenient and I used to call the renal diet the “no food” diet because so many things were restricted. Fluids, of course. And potassium, so virtually no fresh fruits and vegetables. Also, you develop a characteristic smell because of what is not filtered out of your blood.
In the short term, like I said, it was doable. I know some people stay on dialysis for many years, and I don’t see how they do it…but it’s amazing what you can get used to.
On Valentine’s Day while he was on dialysis, I hired the local Sweet Adelines (women’s barbershop quartet) to go and sing to him while he was hooked up. Hey–he was the original captive audience. They sang, “Let Me Call You Sweetheart.” The whole room got a big kick out of it, and I thought his nephrologist was going to pee himself, he was laughing so hard. That would have been appropriate in that setting, right?
I once had an IV catheter installed on my hand, so I know they exist.
For HD, could a reasonbly-long-lasting appliance be placed somewhere where the patient can easily reach?
As I read the sites, the home HD requires needle placement each session.
My cat like to url up beside me, but does not bother me until I show signs of life (as far as I can tell, at least). I can coat the equipment with cat repellant and she will not bother it, if it comes to that.
I use a CPAP machine and she has zero interest in it but has accepted it. I’m guessing the same would hold true for dialysis equipment.
Also, I’m a slob and maintaining a sterile environment would be impossible.
When my husband was on dialysis, the procedure was to implant a section of a bovine (that would be a cow’s) blood vessel in your arm at the place where your arm bends because your own vein could not stand the stress of being punctured so often. (Google: bovine graft dialysis) I imagine there are improvements now, as he did it in 1991.
We had 4-5 cats at any given time so an antiseptic environment wasn’t gonna happen, let alone sterile.
Thanks!
It seems that the current practice (Arteriovenous Fistula) is to connect an artery directly to a vein without outside parts. The pressure in the artery causes the vein to balloon up for ease of puncture.
It also makes the (apparently nearly always forearm) site fragile and causes concern about blood pressure (mine id sub-normal with the meds I’m taking).
I have my AV fistula in my lower left forearm Placement depends on your age/health/veins. I initially had the fistula surgery 05/2014, then “fixed” in 11/2014. We had issues at first sticking me, as my veins curve a lot. No straight shot. I’ve had one blow out which left my entire forearm black and blue for a few weeks.
When I began dialysis, I was on two different BP meds. We’ve now reduced it to one, as dialysis lowers your BP naturally (I “crashed” twice during dialysis - not fun). The drawback is now, my BP hovers on the high end of normal when I’m not hooked up to the machine.
Regarding the sterile household to do in-home PD or HD: When I was talking about possibly doing in home HD, my cats were only an issue for playing with the lines. PD does require you to have up to date plumbing and electricity, which is another reason I passed (I have an old home). I couldn’t afford to bring it all up to date.
Many people I know who do in-home absolutely love it. They can do it on their time / overnight. I prefer only having it three times/week, not every single night. I prefer NOT having half my basement filled with boxes of supplies and not having tubing strewn all over.
It really comes down to personal preference.
Regarding the home peritoneal dialysis: We didn’t have a clean room for that; we just made sure that the vents were closed, fans off, and pets out of the room during hook up and off. Once you’re on the machine, your pets and family can hang with you, etc. The only issue is that you’re tethered to the machine for the prescribed number of hours. We were able to use an extended line, so my client could walk to the bathroom or the dining room with no problem.
He had a port in his abdomen which was surgically placed and then required a few weeks to heal before use. Miss Take is right, you do have to keep a lot of supplies and make sure to order new ones in a timely fashion (we did it once a month).