Dialysis isn't a cure

In my last post I mentioned that dialysis isn't a cure and that for many people, it also isn't something that can go on indefinitely. Like many critical illnesses, some patients respond well to the treatment and do well for upwards of 20-25 years. However this is not a reality for the large majority of dialysis patients. Why should you care? Because kidney disease can happen to any of us. It currently effects over two million Canadians and many of us don't even know we're part of that group.

The National Institute of Diabetes and Digestive and Kidney Diseases (out of the US) reports the dialysis survival rate at close to 80 percent through one year, 64 percent through two years, 33 percent after five years and 10 percent through 10 years. There are many types of cancer (which get much more public and media attention) that have better survival rates than that.

There are a number of factors that influence how a patient does on dialysis including age, how sick they were when they started dialysis and what other illnesses they may have. For example, traditionally those with diabetes and/or high blood pressure do not live as long on dialysis as those with poly-cystic kidney disease (PKD). Younger people (in their teens, 20's and 30's) live longer on dialysis than those who are older.

Dialysis, while designed to help the body by filtering waste and removing fluid when the kidneys can't, also has a "darkside"...a negative impact on the body. The treatments can cause bruising and cramping, nausea and other flu like symptoms. It can impact things like your thyroid and it's functioning. A patients blood pressure can suddenly dive while on the treatment, which stresses the cardiovascular system. Electrolyte imbalances and sudden shifts also greatly stress the body. In fact, Cardiac disease is the largest single cause of death for both hemodialysis and peritoneal dialysis patients, accounting for approximately 43% of all-cause mortality each year.

I was really surprised to learn this. Because of my lack of exposure (thankfully) to kidney disease, I had always assumed dialysis did the exact job that a healthy person's kidneys would do and while a little inconvenient, a person could live a totally normal life with the treatment. As I've continued to learn more about dialysis, the "day to day" things you hear about from patients that don't make it onto the "About Dialysis" information pages are eye opening. So many people have had the experience of seeing a fellow dialysis centre patient go into medical distress or cardiac arrest while receiving the treatment. Many have expressed sadness of learning that a patient they have sat beside every day for months while being dialisized who "seemed fine" has suddenly died. As if living with a critical illness isn't emotionally tough on its own; so many patients have to experience the loss of other patients, just like them. It's has to be hard to hold onto hope in that situation.

Dialysis patients are tough. They rally around each other and look for the silver lining in their situations. I am amazed at how they get through something that doesn't ever have a scheduled end date (other than a transplant and even that isn't a predictable date). You want to learn more about how to be resilient? Talk to a dialysis patient. At the same time, I don't think it is fair that this is the only treatment option for so many people.

What is the solution? Well first off all, prevent more people from needing dialysis in the first place. Kidney disease affect too many people to not be getting more educational and media attention, the way that Cancer, AIDS, MS and Heart and Stroke do in Canada. As adults we need to learn what we need to do to keep our kidneys healthy and do it. We need to teach our kids as well. We need to understand who is more at risk and make sure there is the right supports in place to help them.  Secondly, we need better treatments for those with kidney disease to slow down the progression of their disease so they don't end up with ESRD. This means more research and understanding into the causes of kidney disease and  coming up with alternate treatment if not cures for some forms of kidney failure. In the meantime, an increase in both living and deceased donors would help get many folks off dialysis and effectively save their lives, in a way that dialysis simply can't.

The "Did You Knows" of Dialysis

If you have healthy kidneys, chances are you don't know much about what dialysis is. In fact, you probably don't know anything about it. I know I didn't. Here are a few key points I've learned from talking to those on dialysis (and a bit of Googling) about what dialysis is all about and  why we need more organ donors to step up! And yes, I still am not a doctor so this is not meant to be medical advice. You know where to go for that (not here).

Dialysis is the only treatment, other than transplantation, for end stage renal disease (ESRD). ESRD occurs when your kidney function drops below approximately 8-12%%, effectively meaning that your body can no longer rid itself of toxins on its own. Dialysis is a procedure that is a substitute for many of the normal duties of the kidneys.Without dialysis or a new kidney, people who are in this stage of kidney failure will die in a relatively short period of time as toxins and fluids build up in their bodies. And in case you were wondering, toxins are not a result of eating bad things, doing drugs, or drinking alcohol - many of the vitamins and minerals we consume are processed by the kidneys. If the kidneys can't process and regulate these properly, too much or too little of these nutrients can become harmful to our system. The kidneys also do other things like:

• Balance the body’s fluids
• Control blood pressure
• Activate vitamin D to regulate bone health
• Help stimulate the production of red blood cells

I always thought that if your kidneys fail, you went on dialysis and life went on as normal. Maybe a few appointments a week were a little inconvenient, but that was it. What I never understood was that dialysis is pretty unpleasant and the impact of being on dialysis on your day to day life is huge. I also didn't understand most people can't do dialysis indefinitely (I really thought they could). In fact even a few years can be too much for some people's bodies to handle (more to come on that in a separate blog post).

What makes dialysis unpleasant? Of course that is a subjective term but in a nutshell, here are some of the things that dialysis patients may face (these can depend on the type of dialysis they do):

• Infection
• Low blood pressure (causing nausea, fatigue and dizziness)
• Weight gain
• Extreme fatigue (to the point where working and daily activities are limited)
• Hernias
• Malnutrition
• Itching/skin rash

Obviously each of these things has its own set of side effects as well. Most dialysis patients are also on special diets which limit fluid intake, many fruits and vegetables and have other strict requirements. The worst part is that patients go through all that and its only doing about 20% of the job healthy kidneys would.

I recently saw this video...it does a great job of explaining the different types of dialysis and what like is like when you are on it:

Obviously this post doesn't speak for every different person's experience with dialysis. Like any other serious disease, treatments and responses to treatments differ from patient to patient. What I wanted to try to do however, is give others like me (who know nothing about this treatment of ESRD) a sense of what dialysis is all about. It's the "why" behind why there needs to be more living and deceased donors.

For more information about kidney disease in Canada, causes, treatments and more, visit kidney.ca.