The Land of Longer & More Frequent Dialysis

This blog post was made by Henning Sondergaard on December 3rd, 2015.
The Land of Longer & More Frequent Dialysis

I was watching a discussion amongst a group of nephrologists the other day. They were all respected and internationally acclaimed experts on dialysis. During the discussion many issues arose.

Some of the issues were management of electrolytes; phosphorous, potassium, sodium. Others were blood pressure and fluid control. They discussed how to teach patients to stay within safe limits and what constitutes these limits and how we best measure them. It seemed like there were as many positions as there were doctors in the discussion. Afterward, I sat back and contemplated what I had just heard, thinking that it isn’t easy to be a patient in a system with so much contention amongst the professionals treating us.

Then something dawned on me. They had it all upside down. An image began to form inside my brain. What I saw was this (please bear with me, I will explain the image afterwards):

I saw a group of shipwreck survivors in a leaking rubber dinghy on a vast ocean. The dinghy is full of people who are desperately trying to fix the leaks. A small group of them are pointing towards a strip of land on the horizon. Above it hovers a helicopter with another group of people yelling commands to those in the boat .

This was my visualization of virtually everything that is wrong with dialysis nowadays:

  • The dinghy represents dialysis as it is performed most places
  • The leaks are the problems the doctors addressed in the discussion I heard: electrolytes, blood pressure and fluid control.
  • The ocean is the ocean of ill health and ultimately death.
  • The people in the boat are the dialyzors, some of whom are trying to do as they are told, i.e., fixing the leaks, while others are pointing towards land.
  • The people in the helicopter are nephrologists who are giving orders to those who are trying to keep things afloat. A pitiful minority are pointing towards the land in the horizon that represents a simple solution to all the problems.

It is the land of ‘longer and more frequent.’

Virtually all of the problems the doctors discussed when I listened in would be solved by longer and more frequent dialysis sessions than the completely inferior model performed in-center all over the world. Most of us doing home hemo don’t have problems with our electrolytes, we have much better blood pressure control and we drink pretty much what we want, knowing it is going to be removed the same day at a rate that is not going to wreck our organs or make our blood pressure hit rock bottom.

I always wonder why nephrologists allow the barely-good-enough treatment regime of in-center dialysis. How do they allow patient after patient to go in and out of hospital time and again? One thing I have heard from nephrologists repeatedly is that they feel sorry for their patients. Sorry because they are suffering so much in the chair.

Unfortunately it’s an unfounded compassion. It’s a view based on an illusion I call “physician’s blindness.” The basic premise is that doctors only see their patients in the clinic, therefore they don’t see when they are doing well in between visits. In this case it’s slightly different. Nephrologists see their patients suffer for up to 4 hours in the chair, but theydon’t see them suffer for the 20 hours between sessions. The same doctors are completely blinded to the fact that if they let the patient “suffer” for a few more hours each time, it would reduce—or completely eliminate—the suffering in between sessions.

To use the analogy of the boat, the physicians only ever look down at the boat and frantically give their commands to the poor people who are about to drown. They forget to look up and see one the most obvious solutions that has been on the horizon since the dawn of dialysis.

There can be many reasons for this. Some are financial—more money is made from the in-center model. Others have to do with power and control—many doctors feel uncomfortable letting patients care for themselves. Regardless of the reasons for the present state of affairs, it is time for all of us to grab a paddle and start steering that tenuous vessel called dialysis towards safer grounds. After all, it is right before our eyes.

Comments

  • David Rosenbloom

    Dec 8, 7:47 PM

    Great anology, Henning. I went from the leaky raft to safe, dry island called home dialysis, and in the process went back to work in my woodworking business full time. Not only that, it kept me much healthier and prepared me for a successful transplant. I meet doctors all the time at my home hospital in Los Angeles who are amazed when I tell them I did HHD six days a week at home and my recovery time after treatment was maybe an hour. The problem with many nephrologists is that they are so removed from their patients (being in their helicopter), their patients have become numbers on monthly lab charts. Let's force down that helicopter and get them back to practicing medicine the old fashion way, one patient at a time, face-to-face, peer-to-peer.

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  • Linda Blass

    Dec 4, 11:48 AM

    Love this analogy. When the island is home, you see the persons engaged in favorite activities--sleeping at night, watching movies with family, playing board games, reading, crocheting, having conversation or in other words--living and enjoying life.

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  • Talker

    Nov 19, 5:19 PM

    Neatly and correctly stated. I would carry that impossible dream a step further.
    If only Nephrologists were to start looking at actually healing those with kidney problems.

    Be Well

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  • John Agar

    Nov 19, 5:07 PM

    Henning ... there Is only one two word response I can think of to this post.

    'If only ...' - if only my colleagues could read this.

    'If only ...' - if only they could understand it if they did.

    'If only ...' - doctors, nurses, and (yes) dialyzors understood that weekly membrane contact time (both in frequency and duration) is all that matters ... ALL THAT MATTERS.

    'If only ...' - all effort ... ALL EFFORT ... could be deflected away from 'the leaks' and re-directed to reaching the horizon.

    'If only ...'

    While I once had an impossible dream that, if I could blend a common sense message with enough enthusiasm and reach, I might just be able to help redirect the collective gaze, it seems that after decades of trying, the sum total of my personal efforts can be summarised in two words ...

    'If only ...'!

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    • Nancy

      Dec 4, 1:04 PM

      Thanks, John. So true....you summarized it all.

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