I said there’s no swelling….

orphanus — Tue, 22 Sep 2009 08:56:56 +0000

They say a picture is worth a thousand words. This one, shocking though it is, doesn’t begin to tell half the story.

As I mentioned in this post, my 10 inch incision sprang a leak. Unfortunately that wasn’t the end of the fluid accumulation. Not long after having my drains removed, my abdomen began to swell. Alarmingly. Painfully.

I called my surgeon’s nurse several times, but since there were no signs of infection, they couldn’t fit me in before my next scheduled post-op appointment. I tried to grin and bear it, but as you can imagine, that kind of weight bouncing up and down in newly incised flesh was… less than comfortable. In fact, it could more accurately be described as excruciating.

Finally in desperation, I decided to brave the long waits and hostile environs of the Kaiser ER.

I’m settled into a room, and wait, wait, wait a few hours for a doctor. 3 hours later, a bleary eyed resident makes his way down to the ER. He asks a few questions, orders a few blood tests, and leaves.

A few hours later he returns to tell me the blood tests showed nothing remarkable, and that he didn’t see any evidence of swelling.

I said, “but I…”

He replied “I said there’s no swelling”.

I said, “but, my….”

He said: “I SAID, there’s no swelling”.

I said, “but, but….”

His eyes roll back, he grabs my abdomen by the “not swollen” part, shakes it violently, and bellows in my face:

“I SAID, THERE’S NO SWELLING!”.

The nurse on my other side jumps back and looks around as if affirming her escape route, but remains silent. The doctor slams around for a few minutes, writes some notes, mutters something about he supposes I want pain meds.

Knowing where that question is likely to lead, I say no, in spite of the fact that I’m now in worse pain than when I arrived. He looks surprised, looks at me, and says “no?”. I squeak out a repeat no, just desperate to get him the hell out of the room, get my discharge papers, and be out of this place. Home might not bring healing, but it doesn’t bring additional injury either.

A while later the nurse comes in again with my discharge papers and the boilerplate suggestion to follow up with my surgeon. The next business day, I call his nurse. I get an incredibly snarky response, and no chance of a sooner appointment. I mention I was told by the ER to follow up, and the nurse replies “yes, I see the ER notes here. They didn’t find anything. We have lots of new cancer patients, so we don’t have any appointments available. We’ll see you at your post-op.”.

Still weeks away from that date, I muddle through as best I can, my abdomen becoming larger and larger. Beginning to fear I’m losing my mind, I ask my husband to take a picture. It sure looks swollen to me, but maybe it’s just the angle, or maybe I don’t know what I’m talking about.

The picture sure looks swollen. Desperate for any kind of second opinion, I attach it to an email to friends from a parenting group. One of whom happens to be a nurse at a wound care clinic. She immediately fires back: honey, that’s a seroma. It’s the largest one I’ve ever seen. Get to the surgeon.

At this point I don’t have much hope of getting an appointment. We finally decide to send the pictures to my surgeon, his nurse, and my oncologist.

Hours later I get a call, asking if I can come in, they’ve made an appointment for me.

I wait in the procedure room, and the doctors enter. The oncologist is so livid he’s purple, peppering me with rapid-fire questions: “Who was the doctor? What did he say? There’s no swelling? What was his explanation for, for… this? Nothing?”

It takes two surgeons an hour and a half, a syringe and needle that look better suited to a horse and one large basin to drain this monster, one leaning on me and forcing the fluid into the appropriate place where it can be evacuated with the syringe. An hour and a half to drain this non-existent swelling, this figment of my imagination.

No swelling indeed.

Ask Not

orphanus — Wed, 16 Sep 2009 05:13:37 +0000

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.

The Convalescing Orphan » The Blame Game

I said there’s no swelling….

Ask Not