Monday, January 11, 2010

Do others unintentionally trivialize dialysis?

Since Steve was diagnosed with End Stage Renal Disease and started on dialysis over two years ago, we've made some interesting observations.

We've found that many people believe that dialysis simply "takes care of" the problem of ESRD -- as though dialysis just "made kidney failure go away." In fact, one of the medical terms used is "Renal Replacement Therapy," and the term refers to either dialysis or kidney transplant.

Dialysis does not replace kidney function! It's a stop-gap measure, replacing perhaps ten percent of the filtering function of the normal kidney.

And as dialysis patients know, it doesn't do anything to replace EPO, the hormone that stimulates the bone marrow to produce red cells. That's why kidney patients use medications like Aranesp, which has replaced the earlier need for multiple blood transfusions in kidney patients. Then, we have the phospate problem. Kidney patients must use binders such as calcium carbonate (TUMS) or Renagel to get rid of phosphate which builds up to produce awful symptoms such as intractible itching, not to mention calcification within the walls of blood vessels.

Kidney transplantation is truly the best treatment for replacing kidney function. Nothing trumps a functioning kidney! But transplants are not available or suitable for many patients. (Have you ever heard, "Oh, you can just get a transplant.")

The other curious thing we've encountered is the perception that dialysis is simply a matter of "pluggging Steve into the dialysis machine." Like turning on the Crockpot! Now, admittedly, we do call Steve's dialysis "being on the hose."

A friend of mine required stem cell harvesting for a stem cell transplant to treat his lymphoma - thankfully, it was successful. But the description of the harvest procedure, which is very similar to dialysis, was like an homage to the crucifixion! (And this is a guy who isn't given to drama!)

Steve believes that if most people experienced hemodialysis even ONCE, they would talk about it forever! I am sure he's right. Some of my patients talk about mammograms and colonoscopies with an air of violation. I guess it's all relative!

In any event, we have learned that:
  • Renal Replacement Therapy is sort of a misnomer when it refers to dialysis.
  • Nothing replaces a kidney!
  • Dialysis is not a trivial procedure; it's complicated - but manageable.
Why even discuss this? I think people trivialize many experiences. Like labor, for example. This trivialization backfires when the patient in labor suddenly realizes that there's more to it than she'd thought - or been led to believe! Then, the labor patient feels inadequate - like she can't manage and she's a failure.

There's a sense that since "everyone" has a baby, it must be easy. We all die, too, but that gets our attention!

So, I think a more helpful approach is just to see Renal Failure and Dialysis as what they are: difficult circumstances that would challenge anyone! If you find them challenging, you're right; but there is excellent assistance available.

Take care. Linda Gromko, MD


  1. I notice, too, that people like to trivialize everything medical, especially when it's not their problem. The response I hate the most from people is when they say, "Why don't you JUST....?" Like Why don't you JUST get a transplant" or "Why don't you JUST adopt a baby if you can't conceive?" or "Why don't you JUST skip dialysis for a couple of days?" etc. etc. ad nauseum.

    The "JUST" always trivializes the issue and infers that you are not smart enough to have seen the "easy" solution right in front of you. It also usually means that the speaker is tired of hearing about the problem or can't deal with it.


  2. I know, Miriam. Isn't this infuriating? I do think it sometimes comes from good intentions. For example, we once had a surgeon friend volunteer to "do" Steve's give me a break. I thought this was kind, but certainly, this well-intended person had no idea of the five weeks of daily training we'd gone through to get that procedure down! I also think it comes from that need to "fix it!" Linda