A few years ago, as I prepared for neurosurgery, a nurse who worked there told me, “Spend as little time in the hospital as possible, because the longer you stay, the more likely you are to get sick.”
In a way, that statement seemed quite telling of what was to come for me and an indicator cost of care — the added cost of additional care, additional hospitalizations, and the additional illnesses that come along with that.
Just days later, I realized how foreboding that exchange was.
When I was admitted, I anticipated being in the hospital for one week or less. I had insurance and the support of financially secure family members. Though the prospect of neurosurgery was a little scary, cost was not on my mind.
A few days after the surgery, I had very severe headaches. Although my doctors told me it was normal, I was skeptical, though I ultimately trusted them. I was given painkillers and released.
Within 24 hours, I was back in the hospital with bacterial meningitis. I was deliriously sick and my pain was so bad that a spinal tap felt like relief. I ended up staying in the hospital for another two weeks, needing additional medications, procedures, and surgeries. I was in the ICU for the majority of that time. When one of the doctors attempted another spinal tap, a piece of medical equipment became lodged in my spine and I needed spinal surgery to remove it, which caused additional unforeseen problems. The wound didn’t close all the way and I ended up having spinal fluid leak out of my back (a risk factor for meningitis).
Once the skin healed over, I was left with terrible sciatic pain and a bulging collection of fluid between the skin and underlying tissue. The fluid bulge lasted for several weeks and the pain lasted for much longer. The surgeon recommended additional surgery for the pain, but by that time, I was too skeptical to accept his advice. I lost trust in him and the care team after the multiple miscommunications and I opted out of further procedures.
When I was finally released, I was very weak. After about two months, I had started to recover but I ended up back in the hospital. Because of the lack of clarity on what medication I needed to take, I had stopped taking it. I then got dangerously ill. Only then was I told that I should follow-up with a different specialist who could advise me further on the medication and that discontinuing the medication could be deadly.
I had so many problems in the hospital and thereafter and to me it all seemed to stemmed from one core issue: My doctors and caregivers did not clearly communicate with me.
The surgeon who operated on me did not see me often, or for very long. I constantly alerted the care team about my symptoms — the severity of my headaches, and fluid dripping from my nose (an indication of nasal cerebrospinal fluid leak). I felt as though my doctors and nurses had ignored what I told them, wrote it off as exaggeration, or assumed I had low tolerance for pain. I had lived with severe headaches for years prior to the surgery, but I’m not sure my doctors remembered this when considering treatment. My complaints about severe pain were consistently treated with anti-anxiety medication rather than an appropriate analgesic.
I was very lucky. My insurance covered most of the cost of my treatment and my family was able to cover the rest. However, my stay in the hospital had made me too sick to work and if I hadn’t had so much support from my family, my life would have likely fallen apart.
The financial cost of my surgery was high and the unnecessary care due to miscommunication only added to it. However, the lack of quality communication and trust between patient and caregiver was likely the highest cost to me of all.
Kelly Cosgrove is a contestant, Costs of Care essay contest.
This post originally appeared on the Costs of Care Blog. Costs of Care is a 501c3 nonprofit that is transforming American health care delivery by empowering patients and their caregivers to deflate medical bills. Follow us on Twitter @costsofcare.
