then she appeared

Two times in the past eight weeks I've tried to advocate for myself, medically, and I was met with nothing but skepticism and arrogance.

The first time was my aforementioned cough-that-broke-my-titanium-wire episode six days after surgery. I knew I'd broken something. Knew it. Went to the local ER, asked for an X-ray. Doctor talked me into taking a CAT scan, gave me fluids while I was waiting. Had to wait a long time for someone to read it after. Attending doc came in, told me I'd be released soon, he was sure. There's nothing wrong. It's ok. Then suddenly, no, you're going via ambulance to your surgical hospital's ER because we don't understand what your CAT scan is telling us. Let me hang more fluids. NO, I insisted, the fluids are making me feel worse. Ok, they listened (turns out that was a good thing).

At the ER I stayed in a hallway for 2.5 hours, doped on dilaudid. I make it into a room, at last, and the parade of doctors and surgeons begin. I think I saw seven, plus two nurses and several interns. They initially couldn't load my CAT scan (brought with me on disk) into their system, so everything was delayed. Turns out they could LOOK at it, though, and couldn't see any problem on the scan. They all patronizingly told me that what I was feeling was normal surgical healing pain, and I should go home and take it easy. Seven hours later I did just that, but the entire time I felt that they were wrong.

Five days later, after feeling like crap for those days and having what my visiting nurse and visiting physical therapists both referred to as a "setback", my surgeon's office did a simple x-ray as part of my follow-up exam and told me that yes, the top surgical staple had indeed broken. It would eventually scar over and heal up and I shouldn't worry, though. Even though I could feel flexing with every breath and coughing was making it hurt a lot and I was doing a lot of coughing. Not sure if they could have done anything when I first complained, but I would have felt better knowing I wasn't being hysterical, anyway.

They ended up having to remove a liter of fluid from my lung, and then again doing the same in a week. For some reason I am not getting rid of fluids as quickly as I should be. Still, I could have probably had that done on Saturday instead of Thursday if they had listened to me--I could have had treatment days earlier.

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The second time was this week. I went to my primary care doc because I can't walk any distance without gasping for breath. It sucks, and I figure that 7 weeks into my recovery I should not have this much trouble. My lung doesn't feel any better than it did while I was in the hospital or after they did the thoracentesis (lung tap). I call them in advance to ask if I shouldn't get a chest x-ray first, so they could tell if I've got more pleural effusion, in case I need another tap. I could get the x-ray on my way in as radiology is right in their building. His PA tells me no, he will want to see me first. I insist that she ask him, explain my issues patiently, and point out that I still can't drive so it would be best if I did it all the same day since I have to get a ride. She calls back after talking to him. No, he wants to see me first. SIGH.

So I go in. I tell him everything, he looks at my prior tests. He listens to my chest, says it doesn't sound bad. Starts writing me refills on all my prescriptions. Doesn't think I need the x-ray I want. I insist. So he has me get it done on the way out, along with getting my blood work done. I go home, dejected. I feel like I'm never going to get better, and I feel like my doctor is just not in the caring business anymore. He didn't EXACTLY treat me like I was a hypochondriac, but he really didn't seem to be addressing my concerns.

Yesterday at 7:30pm, so four days later, he calls me at home. Tells me that the fluid around my lung hasn't increased (note that it hasn't decreased, either), but that instead I had some INSIDE my lung (so, pulmonary edema). Swell. The treatment is to take a diuretic, which he has already called in. I should start taking it in the morning. (NOTE: If he had done as I suggested, and had the x-ray done before I came in, I could have started on the diuretic four days ago. But ok. At least I have a diagnosis and a treatment.)

But why does it have to be so damned hard? I live in ostensibly the best area in the country for medical care. My doctors are based out of one of the best hospitals in the country. I am not a shrinking violet about confronting people. And it's taking all I have to get treated. I can't even IMAGINE what happens to people who aren't pushy.

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So this is really a PSA for advocating for yourself. Keep pushing. Apparently both pleural effusions and pulmonary edemas can cause permanent damage, up to and including death. Important to get what ails you treated!

Here's hoping the diuretic will handle my fluids. Because breathing is a good idea!