by Anna Bennett
When you are hit with CKD, whether it is gradual (like me) or dramatic (like Bill), it changes your life, physically, psychologically and financially. We see a lot of hits to DFTSETON from search engines with the question How long can a person live on dialysis? That is a loaded question. Typically, when a person asks that question, either in reality or cyberspace, they are looking straight at their own or a loved ones mortality. This is a time when a brief answer is all too easily misread, misinterpreted, compounding serious depression and/or inspiring hopelessness.
When I Googled the question, I realized that there will never be an exact answer. We aren't born stamped with an expiration date. I found the American Kidney Fund's two sentence answer was factual, but lacking. The first sentence gives hope, and the second sentence takes it away by quoting cold hard numbers. Statistics only work when you are looking at the whole population. Especially with dialysis, each of us although similar in some cases, we are unique as far as our response to therapy, lifestyle, co-morbidities and genetic predisposition I prefer Bill's post Expected dialysis lifespan: How long does someone live who is on dialysis?.
But the real answer isn't written anywhere. The answer depends on so many variables. There are three sides in surviving with CKD-5.
#1. The clinical side: your health care and diagnosing and treating what caused your kidney failure in the first place; Having the best possible access for dialysis; Making sure that your labs are within an acceptable range, and if not, making sure that your prescriptions/dosage are adjusted to bring your lab values into an acceptable range.
#2. The provision of care: what modalities are available for you to dialyize with, and do they fit your lifestyle and current medical condition, is it giving you optimal dialysis?
#3. How well are you taking care of yourself? Have you been educated properly in how you can maximize your diet/health? Are you able to cope with all of the physical and psychological issues that come with CKD-5? Are you able to ask for help when you need it? Do you have multiple resources for information and support?
I believe that anyone facing kidney failure needs to know and understand that the predominant system of 3x a week in center is the MINIMUM dose of dialysis to keep them alive. And the survival statistics being thrown around are for that standard of care - in center 3x a week. These numbers are changing, but only for a minority of people, those who have broken out of the medicare reimbursement enforced 3x a week. See Bill's post Daily dialysis outcomes rival a cadaveric kidney transplant.
I hope that everyone learning about dialysis will seek out the highest dose and most compatible therapy possible (in-center nocturnal, pd, home hemo) and will do what they can to minimize co-morbidities. Once you know what a good standard of care is, that's what you'll want. I got what I wanted - dialyzing at home alone on the NxStage, and there has been no looking back for me, I am healthier and more in control of my fate that I have ever been.
With regard to the system as it stands now - slowly, centers are adapting, and recognizing that it is in everyone's best interest to have healthier
patients dialyzors. Centers are building home hemo programs, more and more people (when able) are being offered home hemo alone; Units are finally getting on the band wagon with in-center Nocturnal. Low and slow is healthier (lower pump speeds, slow dialyzing removes more molecules). The more that people educate themselves and ask for more, then the industry will be forced to listen to us. Change is in the air, so, my answer to "How Long can a person live on dialysis?" - As long as humanly possible, and I'll go to my grave fighting for the best possible care.