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Wednesday, January 05, 2011

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MooseMom

I would guess that anyone who takes the time and effort to learn how to self-dialyze would understand that more dialysis is better as it more nearly mimics the normal function of native kidneys, but maybe I give such people too much credit...

Peter Laird, MD

It is a quite natural reaction to want to reduce the impact of dialysis on our daily activities, that is why nocturnal is a better option for people challenged by time during the day. Otherwise, a good goal would be to keep your minimum times on dialysis each week at more than 15 hours. ANZDATA, the Australian and New Zealand USRDS, showed in 2008 that getting over 20 hours each week of dialysis reduced mortality to 2%/year. More dialysis at higher frequency matters.

MooseMom

Sure, no one wants to sit in that chair with needles in their arm for longer than they have to, but in your opinion, do most patients understand that more dialysis reduces their risk of all sorts of side effects from D? It's one thing to understand this concept but still opt for fewer hours on the machine, but it's another thing entirely to know have had this idea explained to them by their nephrologist.

MooseMom

sorry...s/b "to NOT have this idea explained to them...?

Peter Laird, MD

Dear MooseMom, I had the very unique experience of sitting next to not only old patients of my from my internal medicine practice, but also one of my nurses that I worked with for years. I preached optimal dialyis to each and every one of them for two years, and only one took me up on this to go to NxStage.

Why did the others stay in-center and not go home, the biggest reason was they placed their hope in a transplant in 7-8 years. Unfortunately,one of them already died after 3 years on dialysis. She really hated dialysis and would only let the nephrologist prescribe three hour sessions and because she did fine on her Kt/V in that time, he allowed it.

Yet, from the article above, it is not at all surprising that she is dead already since she only accoplished 9 hours of dialysis each week. To get a transplant, you have to actually survive the 7-8 years many wait for that transplant, and then you also have to avoid any disqualifying conditions that eliminate you from the wait list. 7-8 years for Type O blood type is a very long time when you are talking about dialysis in-center.

On the other hand, it is not at all surprising that patients would place all of their hope in a transplant since that is likely the story they heard from primary care docs before they went to the nephrologist, and it is likely the story that they have heard from the nephrologist, the nurses, techs and social workers and throw in the dieticians as well saying you can eat what ever you want with a transplant.

Go to the NKF, the AAKP and pretty much all you will hear is transplant news. Go to NBC and on articles about dialysis all you really hear is transplant.

So, my own personal recruiting stint in my dialysis unit would probably get a D-, not an F because one did actually listen to my preaching on optimal dialysis. This is with patients I had known for several years and had a very close doctor-patient relationship, yet the great hope of transplant is all that most ever think of and to escape dialysis all together.

Sadly, a large majority of these patients never see the other side of a transplant because they simply don't survive for 7-8 years. My old nephrologist is just now starting a home dialysis program, but transplant is all that I heard from their office and at times quite pushy on that subject until I developed a melanoma that put that converstation to rest. Optimal dialysis is certainly not for everyone to bring home, but if you are looking at the survival stats for the 7-8 year wait, then why would anyone not look at the next best survival strategy which by the way has equal mortality to cadaveric transplant.

How to get through to these folks, I say start early before they become entrenched in only one option long before they start dialysis. Better yet, get to them to lose weight, control their diabetes and HTN because far to many people start on dialysis each year that could have prevented it altogether just by lifestyle changes. Talk about a difficult issue, try going down that road with a group of patients. Very few folks actually listen to doctors advice on lifestyle changes.

In any case, I am glad that you are doing what all patients with renal disease should do and educate yourself on the options. You have learned so much in a short time MooseMom!! You really have become an inspiration to not only me, but others in the dialysis advocacy world.

I hope you are able to find the right outlets to channel all of your energy. I suspect in a short period of time, you will have much to teach others, perhaps one more dialysis advocate in the making before our eyes. Learn much and get involved, you have much to offer us with your energy and enthusiasm.

God bless,

Peter

Bianca

Agreed. I am a NxStage home therapy nurse and have been for almost 4 years now. I have had some success, but in reality, the success of the program can not be achieved by one individual. Where I work now, they have an educator in place that speaks to all pts BEFORE they are on dialysis and gives them all options, PD, Home Hemo, Incenter, Transplant and No treatment all. So between the MD, the educator and me we have had great successes in the last year. I trained about 18 patients from Feb of 2008-Feb 2010. Not HUGE but we did ok for our first shot and that was with a company that did not use an educator. That was all me. Going to MD offices, giving inservices, talking at the AAKP meetings. So now, with thes company I have trained 8 since April 2010 and have about 8 in the wait now!! the word is out!! I see the difference that NxStage short HHD makes in the lives of my patients and I don't see any of them running less than 15 hours a week. Thier treatments are anywhere between 2.5 - 3.25 6 days a week. But in reality, there is also the point of how much dialysis are you getting in that 2.5 - 3.5 treatment!! I have had patients incenter running 4.5 hour treatments for whatever reason and clearances still are subpar! It is the quality of dialysis that must also me taken into consideration and daily?? That's even better!! i suggest home therapy whether it is PD or NxStage to any ESRD patient if they can. Optimally they are the best choices and comparable in outcomes to transplant.

Peter Laird, MD

Thank you Bianca for bringing the home therapies to all of those people and in your zeal for promoting home hemodialysis. All of us need to reach our own sphere of influence especially to the patients.

Thank you again and I hope you are able to continue to have a positive impact.

MooseMom

Thanks for your kind words, Peter. I want a transplant. I am an ideal candidate (quoting my transplant coordinator). But anyone like me needs to work hard to REMAIN an ideal candidate, and getting optimal dialysis is the way to do that. Anyone who wants a transplant but does not understand that you need optimal dialysis while you wait is setting themselves up for disappointment. You can't rely on great good fortune. You have to work hard for every possible advantage in this fight against kidney disease.

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