"My Labs are Great! But…”
At least every week or two, a dialysis consumer on Facebook says, “my labs are great, but…” What follows is a litany of disabling symptoms. To me, it appears that what is going on is too great of a focus on the numbers—and not nearly enough on the individuals or the likely causes of their symptoms. Here are a few examples from different patients:
“ I need help, I am not sure what to do. I recently moved. At my old clinic, I could go to treatment and feel great with energy to do whatever I wanted. At this clinic they took my run time from 2:45 to 3:30 longer is better? I feel awful! Headaches. Feel like my heart is coming out of my chest, vomiting (it was so bad Monday I had to go to the hospital). I had them stop reuse, but still feel horrible! I am very active and all my labs are great , I actually don't even talk with the dietician anymore, and my average gain is 2.5. ”
“Dr and dialysis clinic both keep telling me my labs are doing great....but I am feeling awful....lots of pain, and just no energy to even care I dont have any energy....”
“I was just wondering if there is a logical reason why a lot of us get so tired after dialysis and others don't? My labs are good so it can't be that. I don't pull a lot of fluid.”
Hmm. Fatigue? Lack of energy? Might be undertreated anemia—or overly aggressive ultrafiltration that stuns the heart and other organs and leaves people flattened and at an increased risk of sudden cardiac death. I have long observed that how people feel on dialysis on a daily basis has very little, if anything, to do with removal of toxins. It’s all about water removal.
The total amount of water removed may not be as important as the rate, which is often not paid much mind. Yet, there is evidence accumulating that an ultrafiltration rate (UFR) greater than 10 mg/Kg/hour, or twice the plasma refill rate, as Dr. Agar so elegantly explained in a recent blog post about Volume-Safe Dialysis, is unsafe. But, the UFR is not one of “the labs” that look so great. In fact, it may not really be considered at all.
Pain, especially bone pain, can be a result of amyloidosis, inflammation run amok, an imbalance of bone minerals—or many other causes. But, beta-2 microglobulin (B2m) levels are never routinely measured in the U.S. C-reactive protein levels, which can assess for inflammation are not done. PTH levels are drawn—quarterly. I once saw the lab test values of a well-to-do gentleman who was able to indulge his desire to be followed very, very closely. He had weekly PTH levels—and they ranged from well below the target range to well above it. Ever since, I’ve wondered how useful quarterly measurements could possibly be for managing a complex hormonal interplay. When we tell patients “your labs are great!” we are generally not referring to their bone mineral measures.
Few illnesses are as complex as ESRD, and most people with kidney failure have other comorbidities. In that context, having the routine labs be “great!” is indeed an accomplishment. The hazard is in believing that those labs are the only things that matter—and if they are “great” any complaint must be in someone’s head.
When we don’t measure UFR, B2m, PTH, and who knows how many other contributing factors that may or may not be kidney-related, it’s vital to take symptom complaints seriously, investigate what’s going on, and improve dialysis treatments so people can live as fully as possible.
ESRD surveyors want to see that facilities monitor, recognize, and address patients’ symptoms, problems, and concerns. Does it sound like the facilities involved are meeting this expectation? If not, it’s not surprising if those patients feel their doctors and dialysis staff are ignoring their concerns. Feeling the bothersome symptoms and a lack of concern on the part of the doctor and staff about the effects those symptoms on a patient’s life could contribute to depression that might be a factor in choosing to stop dialysis. We can and must do better. Let’s treat human beings, not numbers.