Kind of a relief, but let my heart down for a couple minutes...

[jmintuck]

I called the Healthcare center where the home dialysis is managed from. I talked to someone there and got my info that was badly needed.

I found out, only for starters, w/o the hassle, that would only begin for me IF I went ahead with it. So many factors to momentary heartbreak. I found out that some expensive plumbing and electrical renos would have to be done to do this. I doubt the Lodge here would allow this to be done. Yes! Plumbing AND Electrical. I figured that this was the FIRST blocking factor.

Next, was the hour spent at priming and more setup of the machine. First hour. Add on 4 hours of dialyzing afterward, then a hour or possibly less of disassembly and getting it set up to reset for that next day. Repeat 6 hours again next day, every day non-stop.

Three and 1/2 hours at dialysis in center looked a helluva lot rosier to me after the research was done. 3 and 1/2 hours where you sit back and let THEM deal with you and dialysis is a hell of a lot better than muddling with the thing for 6 hours a day. Now, 6 long hours a day is like a real job, nearly- OHMYGOODNESS!!

Small letdown, since I had my heart set on home dialysis for so long. My dream didn't seem that badly crushed, thank god. After the info, I learned the hassle would be FAR too much for me. Plus, most of these clients were for rural and mainly distant rural, away from any dialysis centers. I thought so much cleaer, after the facts, and decided in center was FAR more easier AND NOT as time consuming as DAILY at home.

I felt sad for a bit, but got over it. On the up side of things, there is a coffee kiosk between me, where the bus would drop me off and the dialysis center on the other side of the small donut kiosk. Now THAT< I love.

[kickingandscreaming]

That doesn't sound right at all.  I don't do HHD. I do PD. But from what I hear from this forum, most people don't dialyze every day and most do it for much less time than what you were told.  And I don't think the newer machines require much plumbing and electrical.

Why not consider PD?  Yes, it happens every day (actually night).  But it doesn't require any special plumbing or electrical.  Just an outlet for the cycler and about 8-10 hours while you sleep.

[jmintuck]

I am scared to entertain home Peritoneal dialysis as the peritoneum is, firstly a sterile area, and a catheter to this area is permanent and it is generally accepted that you can't bath or swim with that. These are two seemingly large to me hurdles that I don't want to screw around with. I just WILL NOT cross that line atm. Someday in the future, no one can know, but it could become possible one day, but would be left for desperate measures. We are not there yet.

[kickingandscreaming]

I am scared to entertain home Peritoneal dialysis as the peritoneum is, firstly a sterile area, and a catheter to this area is permanent and it is generally accepted that you can't bath or swim with that.

A PD catheter is NOT permanent.  It can be removed--and often is.  A fistula, on the other hand, is forever.  Careful, intelligent PD technique keeps the peritoneum sterile.  And you can't take a bath, but you can swim in the ocean or in a chlorinated pool.  PD is much easier than HD or HHD and is usually the preferred method by people who have tried both.  It also does a better job of preserving residual renal function (peeing) for a longer time and that has definite survival value.  You owe it to yourself to do some more research so you're not acting on misconceptions.

[jmintuck]

I hate to say or argue anything, but I already had the fistula put in and it works very well. I will, for now stick to this, as I want to remain able to have a bath, should I want to. I am not imagining myself in a situation, where showers could even be a question. Not even any remote fears of infection in a chlorinated pool, even. Not this kind of thing with fears. Hemo is pretty much the only way. Few misconceptions, but have to stay as careful as possible.

[Fabkiwi06]

Actually... I have a PD cath and I still take occasional baths. There are special terraderm bandages that my clinic has that fit over the access and let me have my nice long soak.

But I can see why home hemo is offputting. When I was sorting through all the options, it ranked as my least likely option too. I live in an apartment, and the current setups wouldn't work well with that, dealing with the blood freaks me out quite a bit, and I don't have a care partner who would be around to help.

Coffee and Doughnut stops before treatment sound like a good plan. Makes those 4 hours a lot more tolerable

[jmintuck]

That coffee and donut shop makes my day. It really doesn't matter about dialysis sit-in when I had my share of coffee for the day. I can drop back off to sleep and just wait for dialysis to be over with. It looks a lot less frustrating after checking my other options over. I can certainly handle 3 and 1/2 hours after the idea of 6 hours getting assembled for online, being online for 4 hours and then restarting it for offline till VERY NEXT DAY, only to repeat this endlessly for years-OHMYGOODNESS! I just cannot imagine. I will not entertain PD because of what I have heard, and I know it could be done safely, but no.

[Charlie B53]

I will not entertain PD because of what I have heard, ...........

Please take the time to list what you have heard.

I've been on PD  a tick over 3 1/2 years already without any infection.   However, I just wasted that perfect record as I was just released from the Hospital today.  Seems I must NOT have been clean enough or careful enough ONCE last week.  I had to have touched one of the fittings during connection and contaminated myself.   I will admit, the pain from a peritoneal infection is unimaginably bad.  Enough so that I cold barely take in just a very small breath.  I don't doubt the speed of this bug would have killed me within only a few more hours, it is that fast.  Maybe 8 hours from my set up til I was in the ER.

Other than that, PD hasn't been any problem.  It is not tough at all once you get used to doing everything the CLEAN way.

[jmintuck]

OHMYGAWD! A BIGGIE infection. My GAWD-OYE  VAY! This is 100 percent and MORE what I am truly terrified of. Now that you suspect that somehow you contaminated a connector or something, I would be VERY afraid of a similar deleterious event.

THIS. IS. THE. EVENT. I am always ALWAYS fearful of, NO MATTER how careful you can possibly be! You can NEVER EVER count on too careful! You can be so careful and professional, but this thing can randomly occur because of a TEENSY-SEEMING oversight that you might not have noticed until you ARE in Emerg.

I am scared to death of catheters and the connectors at the end of these as they CAN BE INFECTED/CONTAMINATED, at any rate, no matter how careful you can be. Sure, you had a perfect record until now. It seems that Murphy's Law has to eventually happen at any random time. There seems to be no out for that particular law. I just trust my hemo dialysis very much. If the infection like this is painful, like yours was, I don't wanna personally find out for myself HOW it really feels or expose myself to this type of complication.

Whether or not you remain as clean as heck, there just "Has to be that once, sooner or later". There is no real hearsay or anything like that interfering with my decision.

[jmintuck]

I really love the coffee kiosk between me and dialysis when the bus brings me there in time to sit for a coffee before I go to dialysis. I would totally hate to lose that and spend six hours, spend BIG bucks at a reno of plumbing and electrical and all of the mentioned setup all the way down to disassembly for the next day, only for the sh!t to start over again. Better to stick with easy center and the coffee beforehand. I have even looked over pd and don't think I am close to ready to try that yet. I imagine that I could rethink that at another time ad see what I can come up with. I am so deathly afraid of peritoneal infections, that the chances seem low, very clean or no. ANY chance with infection, I don't want to F with. I am SO through with spending months in the hospital, I vow to avoid such a scenario, no matter how short if at all possible. I was bored outta my scull in the hospital that it couldn't be funny now , later or ever! I still residually feel like crying when I remember the intense hardcore bore that all was.

At my home, my bff went to hospital for a heart attack and subsequent open heart surgery. I felt VERY terrible for her as I know how hardcore boring a hospital can be. I nearly cried over that alone, just thinking how she must feel. Sure,  felt terrible about the heart attack, but staying in hospital is Hell on wheels.

[KatieV]

I'm surprised that you'd need special plumbing and electrical work to make it work.  With NxStage, the water connection (if you are using the Pureflow - some people only use pre-mixed bags) has several easy options.  Mine is connected into the washing machine faucet; it can also be connected to a sink or under the sink.  It's a matter of a few minutes to install.  The cycler is plugged directly into a standard outlet.

It takes me between 30 and 45 minutes to get onto dialysis - from start including setting up the machine, all vitals, snap&tap, and making all line connections to pressing "Go".  My treatments are currently about 3 hours long.  When I'm done: rinseback, vitals, disposing of the used cartridge, bleaching the cycler & other surfaces take about 15 minutes.  I am using a chest catheter, so you'd need to add in your clotting time for a fistula.

For me, NxStage means fitting dialysis into my life rather than fitting my life around a dialysis schedule dictated by a center.  I also feel better, have better lab values, and am healthier. 

[justagirl2325]

Home hemo is a serious amount of work.  It is much harder than in centre.  It is an hour set up, four hours on and then at least half hour clean up.  We do it 3-4 days a week.  We are rural so when something goes wrong its all on me (not even 911 just volunteers).  We are almost two years in and I've had to revive him when he passed out on the machine,  struggle with needles over and over again (I can't believe I'm a pro at it now) and I've entered the room when the machine was beeping but not waking him up only to see blood pouring out of his fistula.  Not for the faint hearted. 

With our machine (Baxter AK96) we did need the electrical and plumbing updates.  But they were covered (through Canadian health care) - for this time only.  If we choose to move we pay for the next house to be adapted.  Hydro is atrocious, water is free with our well so hopefully that evens it out.

The only thing good about it is that it lets you be in charge of your care.  Want an extra session so you can eat more freely?  You can do it.  Want to skip a session and do it the next night? You can do it.  Can't make it for 7pm? At home you can make it 8pm.  Want 1.5 litres off and not 3?  Your choice.  I do believe after two years of experience he gets better care at home with me than he does at the hospital. 

[Charlie B53]

Hopefully one of the other members will step in with numbers, statistics of infection rates.   You may be surprised at the infections possible from Hemo, just as deadly as with PD.   There is NO 100% infection free anything when you are sticking anything into the body, either method has it's risks.  Who do you trust more?  Some Tech recently employed with minimal education and experience poking directly into your veins?  Or yourself making a few connections to a few hoses?

Hospitals are loaded with all sorts of nasty things from many sick people.  I don't doubt the Dialysis Clinic has a certain amount of 'bug' simply because of the number of people that pass through their doors daily.

I like to think the bugs within my home are mine, and hopefully I have developed a certain amount of tolerance to many of them.  But my room, table, and Dialysis equipment I have direct control over.  I wipe it down, I KNOW it is CLEAN because I cleaned it.

Maybe I am a control freak.  Maybe I KNOW that I can be careful.  But like all humans, I can make a mistake.  Hopefully, I won't repeat this one.

I take responsibility for myself.  I do not try to lay blame on others.

[jmintuck]

I still don't know yet what to think about PD, but the thought was re-entertained after an encouraging article, with some encouraging comments. I still am unsure of how ready I might be.

[Fabkiwi06]

I've been on PD for 10 months now and ZERO infections. I've accidentally contaminated myself a few times, but I've always been very quick to contact my team and follow their instructions EXACTLY to prevent any problems. Things do sometimes happen, but you can't completely rule out infection for any form of dialysis.

Obviously what works best for me isn't going be the best for everyone, but I'm really glad I'm on PD. It's freed up my whole day and has kept my minimal kidney function from dropping lower.


Plus, if you go on PD, you should be able to indulge in your beloved potato slightly more often No lie, that was a MAJOR factor for my choice... I love potatoes too.