People doing short hemo at home need to monitor things for the same reasons they monitor you in a dialysis centre (well, at least in good ones). Logging things is merely a way of ensuring that things are in fact being monitored, that’s all. It’s also a useful record at times when you have your monthly clinic appointment and you might need to have something in your dialysis prescription changed.
With nocturnal hemo, you don’t do the logging, except just after starting the treatment. Having to log during the treatment would go against the idea of sleeping. But, it’s not needed as much anyway, because everything runs slow enough that treatments are very stable.
Some people may get away without logging, but they are probably still keeping an eye on things every once in a while. They just aren’t logging it. It would be pretty foolhardy not to check things periodically by glancing at the display and the air chambers. I mean, these machines aren’t toys. Your life depends on them.
In my program, a person not doing these things would certainly risk being removed from the home hemodialysis program as a non-compliant patient. A few have.
I believe that we all should do this as a compliant patient. This data is very important for research which benefits other patients as well. Without research data we’re not taking part in helping the renal community…
I am not that altruistic…I leave that to those who feel so and believe so.
I encourage everyone to do as they think best and allow everyone that same right.
And furher Gus wrote…[quote]was reffering to Guillaume who doesn’t do his reports…[/quote]
One correction I do reports every month(well almost)…just not the monitoring.
regards to: I believe that we all should do this as a compliant patient.[/quote]
I don’t have a lot of labels for myself, I’m sure some others have some, but I am and have always been ‘non-compliant’… and as I see some others have lived equally long dialysis lives being what they themselves call “compliant”, I won’t say that has led to my long term survival, but it sure has made it a lot more fun and honest…for me, at least.
And to elaborate, I am not in the comliance business. I do dialysis because I have to, I didn’t volunteer and I don’t do it for anyone else .
And Gus, I guess I 'know’your not an ‘agent’ for the medical community, but I’ve never heard anyone other than medical staff use the word: compliant …oooh…even the word raises the ‘hackles’ on the back of my neck…to me it is anathma !
BTW, I noticed under ‘Memberlist’ that you were the 1st patient along with Bill P to join this board, how did you find out about it so quick…also BTW congratulations on being the < HIGH Volume POSTER>.
compliant …oooh…even the word raises the ‘hackles’ on the back of my neck…to me it is anathma !
I couldn’t agree more. The notion of compliance comes from an acute model of healthcare that is widely used in the U.S., but that doesn’t fit chronic disease at all.
Here’s how it works: If you have an acute illness (like appendicitis), it is self-limiting by nature (either it goes away, or it kills you). Your job as a patient is to get medical help and then to comply (do as you’re told). The staff’s job is to take care of you. In this case, you go to the hospital, have some tests, go for surgery, eat what they give you, take the meds they give you, and once you’re recovered, you go home and resume your life pretty much as it was.
But a chronic disease won’t go away, and you’re on your own far more of the time than you’re under the direct supervision of the care team. As I like to point out when I do presentations to groups of patients or professionals, even people who do in-center hemo are only in the clinic for about 14 hours/week–about 8% of their total time. The rest of the time, they are on their own. So, with a chronic disease, the goal isn’t cure (because there is no cure). Your job as a patient is not to comply, it is to self-manage, which you do by:
– Following your treatment plan (which you should have input into)
– Monitoring and reporting your symptoms
– Maintaining your own safety
The staff’s job is not to take care of you, but to prepare you to take care of yourself, in consultation with them. You are the expert in you, they are the experts in the disease. You both bring a critical piece of the puzzle. And, as I also like to point out, the staff can provide the best care in the world, but they won’t get good patient outcomes unless you do your part as well. Chronic disease care has to be a team effort.
Yup, first patient, yahoo! Gidyup horsess.Yay! 8) Thank Yee for noticing… :lol:
I would have to thank WellBound for referring me one year before starting home dialysis…they had all these little postcards of this site, so I decided to visit. However, There was no posts…it was dead…I decided to give it a push and encouraging some activity here so I decided to even post a picture of me in training session…the only two brave people who ported pics was me and Bill… Guillaume, post us a picture of you, we wanna get to know you even closer… it’s up to you, am not forcing you…
During the 15 minutes or so, I have removed needles, taped, thrown away everything, charted etc., when it goes to heat disinfect I rinse the bicarb jug and bring it back, so I am pretty much done. I do have to wait another 15 or so minutes for it to reach max heat then I get up again and simply turn off the water and I’m done. It does help that I stop bleeding so fast, but I’m assuming your father can hold his sites while you do the tossing of stuff and rinsing of the bicarb jug.
As far as time on and off goes…As in many things I think it is just learning(with a ‘learning curve’ timetable) The Conservation of motion/movement.
it comes with time and experience with which we are all getting plenty of, at our particular ‘Specialty’.
Cathy re – “I do have to wait another 15 or so minutes for it to reach max heat then I get up again and simply turn off the water and I’m done.”
I was trained the same way (on a 2008K machine), but a visiting tech showed me that you only have to wait until the “Rinse” clock goes to zero during heat disinfect which on my machine is 7 minutes after an acid rinse and 0 after a chemical rinse. When I challenged him he pulled the drain hose out of the drain and showed me nothing was coming out of the dialysis machine. I find this tip saves me some time.
I agree with you, Cathy, and my info during a tx is similar: blood pressure is pretty constant, av & vp are pretty constant. Seems to me, nothing ever happens that is noteworthy during my txs. I really don’t mind giving pre & post weights (that part I log in my own spreadsheet anyway, so that I can know how I am doing).
I don’t see any benefit in all of that other stuff they make me log. It makes me feel like am just a mind-less note taker!
I seriously doubt that any researcher would be interested in any of the stuff they make me log every 30 minutes, since none of my logged info is eventful.
If I were someone who bottomed at fairly often (which I am not) or someone that cramped all of the time (which I am not) or someone who had trouble determiing their dry wieght (which I am not) or someone whose txs were eventful in any way, then I could be talked into believing that there is a researcher out there who is grateful for all of the logging I do in order to try and find out exactly why any of that stuff is happenning to me on a tx.
Of course, if something really odd were to happen to me on my tx - just out of the blue, I would more than gladly log all of that pertinent info at the time whatever it is occured. That would make more sense to me than just logging every 30 minutes simply for the sake of having a log.
It does make some sense to me to log all of that info on a patient that is dialyzing in-center, althought I think it makes a lot more sense to do it only on some of the patients. For those patients that regularly have problems with their tx (low blood pressure, severe cramps, headaches, any of the myriad problems that some patients have during tx) it makes a lot of sense to log that info frequently so that the staff can watch for any signs of a problem.
But for patients at home?
And, like Cathy said, you can’t even log that stuff on a nocturnal patient.
Maybe I am missing the whole reaseon for all of the logging that my clinic makes me do during a home tx. I don’t know.