The Complexity of Numbers in Healthcare

“Numbers don’t lie.”

Members of my medical team have used this phrase, and I have caught myself saying it lately, too. Doctors say “numbers don’t lie” when congratulating me on improving my pulmonary function test or when my six-minute walk score is better than my previous one.

Unfortunately, this phrase isn’t always used in a positive or congratulatory way. My medical team has referred to numbers when discussing a decline in my health demonstrated by lab results, data from scans, or measurements taken during procedures. In medicine, numbers are often the driving force behind treatment plans or the decision to stop or continue an intervention.

In my recent experiences, I have learned just how complex numbers are. I can understand their use in clinical data and determining the need for interventions, but numbers aren’t always a reflection of how I feel. With my health, there are disconnects between what the numbers show and my actual physical well-being.

Last week, I sat in the doctor’s office with an oxygen reading of 86 at rest. This was cause for alarm for my medical team. They listened to my lungs and ordered a chest X-ray and lab work the same day. What they didn’t see was that I felt completely fine. Before my appointment, I ran 3 miles. While sitting in the office, I didn’t have any symptoms of low oxygen that alarmed me.

As a patient with cardiac and lung conditions, it is only right for my doctors to take proper precautions. They know my immune response doesn’t always reflect an infection that may be brewing in my body. My body has a delayed response to infection. I may have a fever in the doctor’s office but don’t feel terrible or worn out until the infection has progressed further. This is a situation in which it’s helpful to recognize the warning signs using data and numbers.

With my healthcare, so much focus has been placed lately on numbers. After stopping total parenteral nutrition, which fed me nutrients through a PICC line, the focus on numbers is more prevalent than ever. I am weighed almost daily, my blood pressure is monitored for signs of dehydration, I get lab work done every other week, and body measurements are sometimes taken.

I don’t find my body and weight measurements particularly helpful. If I have learned anything from weighing myself more, it’s that numbers fluctuate. My weight can change as much as a few pounds in just a day. When I weigh myself in the morning and then am weighed at a doctor’s office in the late afternoon, sometimes the measurements aren’t even close.

In this case, I have learned that numbers aren’t the best reflection of health. On days when my weight is up, I may feel terrible from too much fluid retention but get praised by my doctor for “gaining some weight.”

There are days I cringe when my doctor calls and says, “Your lab work is completely normal” because it doesn’t seem to explain or justify how terrible I may be feeling. Sometimes numbers invalidate how I feel; other times, they help confirm it.

This is what makes medical numbers so complex. It’s difficult to give them a lot of weight when making clinical decisions. Sure, numbers can confirm a diagnosis, and they can often help doctors and clinicians arrive at a diagnosis. But other things need to be taken into account.

What I verbally report to a doctor about how I feel should also be valid. I don’t need numbers to confirm what I’m feeling. Just because my numbers look amazing on a chart doesn’t mean I am physically doing well. Just because my numbers are low doesn’t mean I don’t feel physically strong. After focusing on numbers for so long, I have realized that although they can provide some clinical information, it doesn’t take away from my words or invalidate what I feel.

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.