The Convalescing Orphan

Some might wonder what drives a patient to think they have anything more to add to the health care discussion. Certainly the blogosphere is full of wannabe medi-bloggers. Why is what I have to say unique or edifying?

It’s a valid point. I may be just another voice in a vast ocean. However I present a few viewpoints that are underrepresented, and certainly, you don’t see this much of a… medical train wreck all wrapped up into one single, solitary human.

I’m a young cancer survivor, I have a rare disease (also known as an orphan disease), I have a child with autism, and my experience with health care reads like a defensive medicine textbook.

One of the more egregious examples happened 4 years ago. Five years after a PAP showing AGUS, and countless followup PAPs, I finally got an endometrial biopsy, and the course of my life changed. I was diagnosed with cancer.

I was admitted to Kaiser for a hysterectomy on a Friday night. Several hours later I was moved from recovery to a room with 4 beds. Over the course of the 8 days I spent in the hospital, it was full except for the last day. A steady stream of women rotated in and out, in part due to Kaiser’s drive-through mastectomy policy (some women were discharged in as little as 12 hours, others in 24).

For the most part the care was acceptable. Everything was done according to schedule, I had help on and off, and I tried very hard not to have to summon the nurses.

Unfortunately near the end of my stay, I went to the bathroom, and as I began to stand, a gush of fluid poured from my incision. It just continued to leak copious amounts, as I tried to figure out exactly what was going on. The floor in the tiny bathroom was covered in fluid, and I was afraid if I tried to move, I’d slip and fall. I didn’t want to sit back down on the toilet, not sure if it might contaminate my now rather open wound.

I stood there, half squatting, my legs shaking, and decided to pull the emergency pull cord. I hear the reassuring “ding, ding, ding”. I waited for a few minutes, since it typically took the nurses 2–3 minutes to answer the calls of my suitemates. Unfortunately there was no answer. I eventually pushed open the door, and tried yelling, since my room was closest to the nurses station. After yelling for a few minutes, my roommate, recently diagnosed with late stage breast cancer, exhausted from large doses of phenergan, woke and asked me in a groggy voice thick with sleep what was wrong. I told her my incision was leaking and I needed help. She pulled her emergency cord. We heard both chimes alternating, “ding ding, ding ding”.

Still no answer. I can’t hear anything at the nurses station but the call button chiming.

My legs burn with fatigue, and I’m terrified, unable to actually see the incision, not sure what could possibly be happening. I yell out the door asking my neighbor if she can reach her phone. I ask her to press 0, and call the hospital operator. She does, and the call goes out over the PA for a nurse to report to the nurses station.

Slowly I hear the shuffle of feet, and eventually “yeah, yeah, what’s the emergency?”. The bathroom door opens, and the face peering in at me turns a ghastly shade of gray. She screams “oh my god!” and runs into the hall “I need help in here, hurry, hurry!”. A bounty of nurses flood in, supporting me, help me to bed, get me cleaned up and changed, and finally, all is okay.

It would be easy to scapegoat the nurses, but anyone who has lived in Los Angeles knows that Kaiser nurses have not had an easy ride. Statistically, outcomes like mine are rare, it likely wasn’t the first thing in the mind of the nurses when they heard the call. They certainly were wonderful to me when they realized the extent of the problem. It’s not news that hospitals are understaffed.

Unfortunately, the evolution of health care delivery, and now the battle over health care reform has painted the patient as the enemy of good care, overusing resources, demanding drugs, not following instructions, suing frivolously. This culture of blaming the patient seeps out in the most unexpected ways. Health care providers don’t expect the worst, because the worst is rare. This leads to the worst kind of waste of all: the missed opportunity.

A lot of verbiage gets thrown around about partnering and teaming and patients being involved in their care. Until they are seen as equal partners, opportunities will continue to be missed. Money will continue to be wasted. Cancer patients with slam-dunk signs will continue to be misdiagnosed in spite of advocating for themselves. People with rare diseases and conditions will continue to wait decades to be treated, suffering needlessly, and developing complications.

This is the true reform of health care. Effective reform will remain elusive, until patients are seen as a valuable and important participant of the health care team.