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You're dissatisfied about the care you're getting and it's not improving. Some ideas to consider...

  • Respectfully discuss it with a neutral third party. Your social worker can be an excellent resource. Or your nephrologist if he or she is uninvolved. Keep in mind that your nephrologist may have an ownership stake in your clinic. 

  • All else fails, you can contact your ESRD Network — the government's contractor for dialysis oversight and grievance investigations.

  • Talk with other patients at your clinic. They may have good suggestions.

  • DO NOT let your relationship irreparably sour with your nephrologist or clinic staff. Regardless how right you are, do EVERYTHING to keep things respectful. That can be hard when you're not feeling well. Think about it, completely healthy people are often grumpy when they simply don't get enough sleep, and they aren't dealing with a chronic illness. But as tough as it is, take the high road.

  • All else fails, you can contact your regional ESRD Network. They are the government contractor tasked with dialysis oversight and grievance investigations. 

A cautionary tale...

A young patient (20s) in Colorado Springs who we'll call Mike loses his patience and raises his voice at his nephrologist. By this time the doctor can't take it anymore and gives Mike due notice that she will no longer be his doctor in three weeks, and advises him to find someone else. He must find someone else. No doctor, no outpatient dialysis. 

Surely there will be another doctor who will oversee Mike's care, right?  No.

Nephrology practices often have noncompete clauses. Meaning if your relationship irreparably suffers with one doctor, you may not be able to get someone else in that practice to oversee your care. This  could very well be all the doctors who round at your clinic or even in your whole town. 

But let's say there are multiple nephrology practices in your region. There were in Colorado Springs. But Mike still could not find another doctor. He's not alone. Many patients across the country have faced the same predicament. How?

 In all likelihood, Mike's medical records documented his behavioral issues, and even if they didn't, any new doctor will call your current doctor wondering why they're ending the care. Remember, in our current system, a nephrologist earns more money for every patient they treat. Voluntarily giving up income isn't normal behavior in any profession... unless it's to avoid a major headache. This left Mike with two options. Travel prohibitively far for treatment (which he couldn't do with no car or energy) or resort to the emergency room.

However, ER's will often only take patients once your blood toxins reach an emergency level. This could mean only getting dialysis once or twice a week, which is dangerous and often unsustainable.  Mike passed within a few months.

We live in a free country. No private doctor or clinic is obligated to oversee your care.  In fact, there are only two places a patient seems to be guaranteed  access to dialysis regardless of behavior. The ER is one. Can you guess the other? 

The answer may be the biggest irony of all.


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