During the horrible heat spell I lost power for nearly 3 days and due to a million circumstances couldn’t move my NxStage somewhere with power so needed an “emergency” treatment after missing two days, so I did in center for the first time.
I must say it was nice not to do much. I did self cannulate, although the center does buttonholes and was willing to do it, and I did remove the needles myself as my tech knew someone who was interested in self cannulation and wanted to tell him how I did it.
I went to DaVita in Concord and I must say everyone was real nice, very curious as to the home modality, and it was a nice break. But the reality was the next day as I got on I realized it really isn’t all that much work with the NxStage, (I take some time hanging my bags so when I am ready to get on all I have to do is insert cartridge and connect bags). I was much more comfortable at home.
I did meet their director and spoke to him at length and did compliment him on the cleanliness of his facility and the fact that everyone seemed to follow the various protocols. They must go through boxes and boxes of gloves a day, but I never saw anyone use the same gloves going to machine to machine except when they were cleaning them down at the end with bleach.
home hemo 9/04
who can no longer say I’ve never dialyzed incenter
My Fresenius center is nasty. I have to watch them like a hawk. They flail the open lines around, getting them too near the red sharps box (which contains pathogens from other patients’ blood), miss-calculate fluid removal, leak puddles all over the floor… I could go on for a page. Unfortunately I’m not able to do home HD. I’ve been dialysing with this company for nearly 21 years. And I do bring these things to their attention at every patient review.
Yes, they talk up a good promise, but it always degenerates back to the same old things. I’m sure they must get fined by the state inspectors. They can’t even keep the protective covers on the eyewash stations, and patients hang their bags, canes, etc. on them while weighing. I always put the caps back on but they are off again next time. It’s ridiculous. Don’t people have any sense of pride in their work anymore?
My first official post and I’m already fussing, sorry about that! I’ll try to find something nice (or at least helpful) to talk about for the next one.
Rusty, welcome to Home Dialysis Central. I’m sorry that your center does not seem to be meeting standards. Have you tried contacting your ESRD Network, or OSHA to file a complaint? You might get some more ideas in the Rights and Responsibilities module of Kidney School at http://www.kidneyschool.org.
What are the reasons why you can’t do home hemo or PD?
I did PD for several years while working full time (traveling too) and had a gallbladder surgery go terribly wrong. That was a really hard hit. 3 Months in the hospital, very very sick with peritoneal candidasis, and now too many adheasions and scarring in there. Probably some hidden pockets of candida remain too. I try not to think about what that could mean.
A cadaver transplant in 1988 didn’t work (not even for a day). 3 months in the hospital at MUSC trying radical treatments. Since 1994, I’ve had a St. Jude aortic valve, and so I am reluctant to become immune-suppressed again. My current situation works for me, and I’m able to vacation a couple of times a year and run at a clinic at the beach or wherever. But I’m thinking I probably wouldn’t live any longer with another transplant.
My wife has done so much to nurse me back to life, literally, and she works very hard. I do not wish to burden her with the responsibility of having to support me on home hemo. Our son, born a week before I got my fistula, is somewhat grown now… Working and going to college but living at home in our small house. That was a long haul, but very well worth it. I just turned 50, she’s 48 and still hot! We still have fun. Anyway, we’re beginning to be a little more free and able to relax now. Life is good. Don’t want to fix what ain’t broke.
Thanks for the link, I know I really should be more pro-active. I’ve watched out for myself for so long, I guess I’ve become complacent, but it really would be helpful for those that cannot watch out for themselves.
I guess I should try to find a forum for in-center patients. Meanwhile I’ll just lurk around here.
Hey Rusty, thanks for your story…it really helps us feel better and keep going…very encouraging. I also feel the same way sometimes…“Don’t fix whats not borken”…
I’ve also had a transplant awhile back and it seems its much harder managing that than doing dialysis. However, if you strike gold with a kidney transplant and can just keep that kidney for over 10 years then that’s better than dialysis itself…its a gamble but heck… :roll:
Believe me Rusty, home dialysis is a dream come true…if you switch you will realize that you have discovered even more peace in your life, not just for you but also your entire family! You will feel more complete!..
If your thinking of in-center dialysis at home, well its not like that. Today there are two dialysis machines designed for home use that will cut down the work load of managing them…Aksys and NxStage…these two machines are not comparable to standard in-center machines, so it will make your dialysis life at home easier and less stressful!
Anyway, if you change your mind feel free to research and ask more questions, we’re here to help you!
Welcome! If you do home dialysis, your wife would not need to be your “nurse.” In fact, it’s best if the patient learns how to take primary responsibility for dialysis. In many situations, the partner provides the extra pair of hands and the one on hand to call if help is needed. I know some people who do dialysis alone, most clinics require partners.
I know patients worry about the stress on family when they do home hemo. However, keep in mind that spouses and other family members experience stress when a patient does in-center dialysis too. If you read the message boards here, you’ll see how patients on home hemo live fuller lives compared to many in-center patients.
I hope some patients will talk about their concerns for family stress related to home dialysis before and since they’ve learned to do home dialysis.
Thanks Beth and everyone who has responded. I have a lot to think about. As it turns out one of our doctors just returned from a NxStage introduction, and they may be considering getting back into the home dialysis business.
This forum will help me think through my options, so I’ll keep gathering info wherever it presents itself. Meanwhile, I’ll do what I try to always do; lean into it and keep on truckin.’
That last phrase ought to date me.