Enabled to be Disabled

I recently was honored by being elected to the Board of Directors of Home Dialyzors United, formerly NxStage Users Inc. and had the privilege of attending the American Dialysis Conference in New Orleans.

This was my first opportunity to travel with the NxStage System One, and I admit to being a bit anxious. The thought of being saddled with a 100 lb. albatross while travelling was pretty daunting. Armed with plenty of five and ten dollar bills, I managed to load everything in my van, unload it at the hotel where I parked, load it into the shuttle, grab a skycap at the airport, wait an hour at the ticket counter while United Airlines tried to deny me a ticket due to the weight of my “medically assistive device” (which is allowed by law, and which law I provided them a copy of, to no avail). I then proceeded the process all over again on arrival. This is what travelling dialyzers looks like:

Meeting up in New Orleans

Now what, you might ask, does this have to do with being enabled to be disabled? Remember in one of my earlier posts when I described first seeing a dialysis center, and a sea of comatose bodies hooked up to machines, blaring out alarms? Now that I have ventured out into the world, as a dialyzer, I feel compelled to comment on the dependent culture that most of these clinics encourage.

Sure it may be nice to walk into the clinic, check your independence at the door, and let a nurse or tech take over your treatment – once in awhile. I admit to readily succumbing to the experience once or twice myself! But on a regular basis, I believe that it robs you of any desire to achieve or maintain some semblance of independence, and erodes one’s sense of individuality.

Nothing brought this concept home to me louder than listening to some of the speakers at the ADC conference. In Canada, they are striving to move their dialysis patients home, and some areas have achieved as much as a 51% home dialysis population, which they deem good, but not great.

One attendee, arriving from Denmark, lost a leg due to an unfortunate accident, and uses a wheelchair. Denmark provides him with an aide for that disability, but when he started dialysis two years ago, they would not let him do home treatments UNLESS he could do them himself, alone, without his aide! This man can move faster in his chair than most of us can on two feet, and it was an honor trying to keep up with him.

As I talk to more and more dialyzers, some who have been on since childhood, others for most of the last 20-30 years, the consistent theme I keep hearing is, “my life, my way”. All of them continue to overcome insurmountable odds, comorbid conditions, unfortunate accidents and setbacks, and everyone strives to live a full life, with dialysis as the new normal.

Various forms of home dialysis have made this possible, and each of us must choose what work(s) for us. In some cases, this could be a combination of treatments, from peritoneal to transplant to hemodialysis and back again. Nothing about life on dialysis is static. These people are mothers, fathers, sisters, brothers, dancers, singers, doctors, rv’ers. Some work, some don’t, some have partners, some do not. What they all have is a passion for life. As one active dialyzer in his mid fifties, who has been on some type of dialysis for the last 29 years said ” I don’t have to be on dialysis, I get to be on dialysis”.

So why then, are there so many people still lying passively through their in-center treatments? Is it possible that our culture is not doing enough to encourage them to take charge of their own lives and treatment? I think so.

A farm in rural Pau, France, where they raise ducks for the famous French cooking! Even the ducks have a better life than most dialyzers!

One of the biggest hindrances to independence is the care partner requirement that the FDA/CMS has imposed on home hemodialysis treatments. People work, spouses work, people live alone, spouses and BFF’s leave, stuff happens. That’s life. But should this then affect your treatment of choice, forcing you to return to less effective in-center dialysis treatments? I think not. We are the only country in the civilized world that penalizes dialyzers with such an archaic and discriminatory rule.

Think how cost effective and efficient it would be to have an “in-center self treatment” pod? For those who couldn’t or wouldn’t do self treatments at home, wouldn’t a drop-in center be nice, where, at your convenience, and on a space available basis, you would do your entire treatment, with only a tech available for emergencies. In Denmark, dialyzers are given key card access, and can enter their clinic 24/7 for supplies or treatment.

And it would seem to me that adding a nocturnal shift to the centers, which would require minimal staffing, and uses “down time” would also be both cost-efficient, and profitable, while promoting the healthiest form of dialysis available. Imagine how fast those arriving in wheelchairs for their 6 am in-center shift would sign up for nocturnal, when seeing all the nocturnal dialyzers leaving refreshed, ready to face the day head on?

Sadly, I also believe that our for-profit health care system, and the loophole in the CMS regulations that allows nephrologists to own their own dialysis clinics, also fosters patient dependency. Although, ultimately, home hemodialysis is more cost-efficient in the long term, it takes up to 18 months before each HHD patient reaches a break even point break, whereas in-center treatments are profitable almost from the start. Sadly, many never make it to this point, because a care partner quits, burns out, or even leaves. This shouldn’t be a deterrent to quality care.

Ultimately, we have been a nation of patients used to relinquishing our health care to medical professionals, and becoming a submissive and complacent casualty of the system. Even the use of the word “compliance” in dialysis and transplant treatments reinforces our dependency and complacency. This culture is slowly changing, but it is up to each one of us to become an active participant in our own medical care. We are and always should be part of the “treatment team”, the most vital and important part. After all, our lives depend on it.