A loaded question: How long can a person live on dialysis?

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.

Comments

[Somerville]

One problem is that many patients are locked into a treatment regimen by their government or private health provider and have very little influence on whether treatment times can be extended or modalities altered. NxStage doesn't exist in Canada; many US centers insist that all patients get just three hours three times a week in order to maximize usage of the available dialysis stattions; home hemodialysis is not available in some countries; in England patients are pressured into accepting PD because the government believes it is less expensive, etc.

The other problem is that co-morbidities are often difficult or impossible to modify. Nothing will get rid of type 1 diabetes, one of the major causes of renal failure, and on dialysis controlling the pathogenic influence of hyperglycemia becomes more difficult, since with HD it dwells in the blood for longer, and PD packs extra glucose into the patient's peritoneum. When continuing renal failure and dialysis themselves are constantly adding new co-morbidities, minimizing co-morbidities, whether pre-existing or new, can be next to impossible.

[Anna Bennett]

Home nocturnal is available in Canada.

My point is that modality availability and treatment times need to be changed. Bill has touched on medical ethics being replaced by business ethics in dialysis therapy. Your comment shows yet another example of profit being considered before health.

There are many factors in choosing a dialysis modality, (medical, social and availability) Transplant could also be considered a dialysis modality (although it really is a separate therapy - I just never thought of including it until I read your comment - but there are strict criteria for transplant, and not everyone is eligible, and not everyone chooses to go the transplant route) And the question is: How long can a person live on dialysis? My guess is that this will be an ongoing discussion.

I do firmly believe that managing co-morbidities, can be herculean, but not impossible. And let's face it, this is a battle that all of us will eventually lose - we just need to be armed with the best possible education and equipment. That is what I am striving for.

[Fernanda]

If you need more info on this issue, I recommend making use of http://www.pdfqueen.com pdf books searching service