Would like to read firsthand accounts of patients who have gone from 3x a week conventional hemo to daily or nocturnal: 1) How do you feel during tx as compared to when you were on conventional? 2) How do you feel post tx compared to when you were on conventional 3x week hemo? 3) Is it worth the extra time and work you must be on the machine?
Also, would like to read a comparison report by those who have been on more than one machine in daily or nocturnal dialysis: !) On which machine did you feel the best and why?
I was also wondering if anyone who responds would comment on how often they’re doing nocturnal dialysis. Michael (my husband) is starting training Monday for a nocturnal home hemo program, and he will be dialyzing every other night, so seven eight hour treatments every 14 days instead of six four hour treatments in the same time period. Is it REALLY enough extra dialysis to make a differentce? We’re banking that it is, but it sure would be nice to hear some personal accounts.
I think it would be more appropiate if you’d register on this board so that everyone knows your real name and your email address…makes patients feel more comfortable who they’re talking with…right now we don’t know who you are…it’s like talking to someone behind a black screen
I agree with Gus. It does help to post under a constant name and even better to register. “Guest” is the default name and posts under this byline are by numerous people. Even if one chooses to not register it would help to pick a unique handle and stay with it.
We should all remember that communicating over the internet is different then any kind of in person communication. Most posts are anonymous even when the poster signs a name. The way around this is time. I feel like I know Marty because she posts under the same handle and over the years I’ve learned her story. I’m getting to know Gus because I can follow his thinking/story in his posts over time.
After participating in online discussions for over 8 years I’ve developed a healthy skepticism, however, I also know that first time users are arriving on the internet every day. And I know that learning a new skill – communicating online while adjusting to ones own CKD or the illness of a loved one – takes time. I suggest we start a thread with general tips on how to be seen as a good online citizen of the ESRD community.
I think the fact that people go to the extra effort to dialyze more frequently and/or longer is a strong statement of the improved quality of life that comes from home dialysis. My experience is that the choice of machine does not matter as much as the length and frequency of treatment.
I currently use the Aksys, prior to that used the B Braun and I have run as a visitor nocturnal incenter on a Fresenius K. And I experienced the benefits of longer dialysis during the 11 years I dialyzed incenter as I increased my run length on a Cobe Century 3 machine from 4 hours to 4.75 hours. My personal experience leads me to believe that how you feel living on dialysis depends on how much dialysis you get, not differences among the various machines.
I hope I didn’t offend with my question about every-other-day nocturnal. I have read the patient stories and–I think–just about every other section of this site, including posts on this board as far back as I can go. But it seems like most of the folks who are on nocturnal are doing it six nights a week, so I was wondering if anyone had experience with the every-other-night routine.
But to tell you the truth, I guess we’re already pretty convinced or we wouldn’t be starting Monday! We actually live a good 1 1/2 to 2 hours from the unit where Michael and I are training, which means I have to take off three afternoons a week for 6 or more weeks. But we’re so excited, we’d drive 2 days each way if we had to! We just can’t believe how fortunate we are to be getting this opportunity.
I also wanted to say that I agree with your comment about posting as “guest.” (I did that on my first post–but have since registered under my real name.) I guess anyone who visits the “Brumley” board knows where anonymity can lead. Sigh…
So, if I may, I’d like to introduce myself to all of you. My name is Deborah Bebb, and my husband’s name is Michael, and he’s been on dialysis for four years–two on PD, two on in-center-hemo. We live in Prescott Valley, Arizona, about 80 miles from Phoenix where we both grew up. Before Michael was disabled (by a heart condition about two years before he started dialysis) he worked as a counselor with seriously mentally ill patients, which he absolutely loved. I’m an editor for a national woman’s magazine, and we have a 20-year-old son named Doug who lives with us while he’s going to college. Oh yeah, and we have the most adorable dog in the world–a golden retriever/St. Bernard mix named (of all things) Baxter.
Anyway, I know I’m looking forward to getting to know all of you–and I hope when Michael’s eyes improve (he’s having some problems with corneal ulcers right now) he’ll post too.
Hi Deb,
Actually I think both Gus and I were addressing our comments to Guest posters, I think your question got lost in the shuffle. To answer your question I think Michael will notice a big improvement over three day a week 4 hour treatments. I did a study of every other day nocturnal and found it to feel about the same compared to daily short. The one issue I had trouble with was that I would not sleep well on the dialysis nights and then I would sleep well on the nights in between. I never really got use to dialyzing while sleeping but towards the end I stated to sleep better.
You are right that most of the posters here seem to be allowed to do daily, all the more reason that your/Michael’s experiences are a great addition to the board. You’ll be able to give us first a hand account and then when the day comes that you are allowed to try daily you’ll be able to give everyone an idea of how the different options compare.
BTW did you read Marty’s profile about her dad? Maybe you could profile Michael and post to the site. Just a thought – I’m not assigning homework. :lol: