Nocturnal is BOSS

Howdy Folks

Iv’e noticed a lot of postings and questions regarding nocturnal… That’s great the more people ask the better… seeing that nocturnal dialysis is BOSS
without a doubt far more superior than PD, CAPD and inadequate conventional “maintanance” heamodialysis .

I now consider conventional to be " maintanance" just that and only that. and it will stay that way until people take a firm stand on the choice of therapy that they want, that is your right.

The idea of one size fits all has to be kicked out of a high flying plane I’d jump too with that senerio… but my parachute will be of common sense not with the wishes and protocol of others…

For Answers on nocturnal I’d suggest/reccomend/encourage that you go to this very informative site http://www.nocturnaldialysis.org/ Do yourself Justice

Prof John Agar explains nocturnal thoroughly and without the usual mind boggeling technical jargone. Excellent example of a person who not only knows what he’s talking about but how to convey the message in laymans terms. Nocturnal is Boss and so is this site.

In fact Id like to see copies of the literature in this site distibuted to all clinics so that people having to make decisions on forms of therapy will a least have ALL options.

Richard C/o Jessie

I agree patients need to advocate for ALL choices. In the U.S. your choices are limited to what your center has to offer. So rather or not you can even do home hemo much less nocturnal depends on your zip code.

Marty

It also depends on how who your health insurance is through and far you’re willing to travel to get what you want. Although people doing in-center dialysis need to travel to dialysis 12-14 times a month making it very important that the clinic is nearby or there is reliable transportation (self or other) to get there, when a patient does home dialysis, after training, in most cases patients only need to go to the clinic 1-2 times a month unless they need to get IV medications that they can’t get elsewhere. Some patients have chosen to travel long distances or move to get the type of treatment or machine that they want. This isn’t possible for everyone, so we hope that more providers will offer patients more options and, from all accounts, this seems to be happening.

Yes, we will continue to sit around and hope more centers offer more choices instead of ever truly making it a patient choice. In the mean time if patients decide to make choices we will put the burden of cost on them for traveling or moving. Doesn’t seem to bother us one bit to suggest a patient move or travel to get what they want and incurr the cost but the minute a change is mentioned in the center protocol the 1st words out of the gate is Money. It cost $$$ for the training nurse. Well it also cost gas and car maintenance to travel and there is no reimbursement for the patient, not even an insufficient amount. Maybe the next time CMS looks at revising the payments they should look at the conditions of coverage and insist on patient choice and maybe this is what patients should start advocating for. Obviously this is only my opinion and is biased toward the patient side who actually are the means for anyone being paid anything.

[QUOTE=Beth Witten MSW ACSW;11998]It also depends on how who your health insurance is through and far you’re willing to travel to get what you want. Although people doing in-center dialysis need to travel to dialysis 12-14 times a month making it very important that the clinic is nearby or there is reliable transportation (self or other) to get there, when a patient does home dialysis, after training, in most cases patients only need to go to the clinic 1-2 times a month unless they need to get IV medications that they can’t get elsewhere. Some patients have chosen to travel long distances or move to get the type of treatment or machine that they want. This isn’t possible for everyone, so we hope that more providers will offer patients more options and, from all accounts, this seems to be happening.[/QUOTE]Hi … I think that being here in Canada we are somewhat better off… with are health care system… but the fact still remain that we do not have the right to choose… personally and my boy concures that if our nephrologist was to ask Jess if he wanted to try nocturnal we would jump right in… in a heart beat… As it stands to-date Jess doing 3x3 dialysis is just NOT cutting it…his blood work is going in the wrong direction… I firmly believe that we had a window of oppurtunity to correct his blood work as well as his bp’s while he was on a school break but now that window is shut… I keep hearing the same thing “well that’s the way we alway’s do it” to me that’s just outrageous to think that the metabolisim and physical make up of a 18 year old can be the even considered same as the cohort. We are now patiently waiting for the results of a resent Echocardiogram all what we need to see if thier is damage to the heart (LVH) and if so then the preverbeal yuo know what is going to hit the fan… Now that’s fact.

Richard C/O Jessie