I have long felt that the U.S. health care system disrespects human dignity. It focuses on people who are already broken, and patches them up with pills and surgeries before unceremoniously dumping them back on the street. "Treat 'em and street 'em" is no way to deal with real illness. What about preventive treatments that keep us from "breaking" in the first place? What about disease management that focuses on sustainable lifestyle interventions that don't cost a penny? What about supporting the full spectrum of rehabilitation services (including speech, physical, and occupational therapy, and mental health support) so people can completely recover and rejoin society, rather than limping along in chronic pain? So many of us are dumped on the street and left medically homeless, without anywhere to turn for real help.
This month, I had the unfortunate experience of miscarrying. It was my first pregnancy, and my first loss of pregnancy. (I'm batting a thousand, I guess.) I have never had to work so hard in my life to get SOMEONE to help me deal with a medical situation. The frustrations involved have only reinforced my negative opinion of the health system and my burning desire to do something to improve it.
It all started happily enough.
January 1 (ish): I learn that I am pregnant. It's a wonderful surprise. I know that I am what obstetricians call a "high-risk" patient (because of immune system and heart problems). So I promptly call the department of Maternal-Fetal medicine at Johns Hopkins University. I figure that if anyone out there can help me, it will be them. I am stunned (but not surprised) to find that their first available new patient OB appointment is three weeks away, on Jan. 23. I take it, thinking I can afford to wait.
Jan. 14: After 3-4 days of light bleeding, I call the OB's office and ask for help. (Several days of bleeding can mean you're miscarrying. Scary stuff.) "Go to the ER and have it checked out," they say. So I go, at 11 a.m. on a Monday, and spend the next 8 hours getting nowhere and wasting my time, waiting, waiting, waiting, in a small, stuffy, uncomfortable room packed with moms in labor who hadn't gotten a bed yet. By the time I see a student doctor, it's dinnertime and I'm starving and exhausted. The young doc gives me an ultrasound and exam, and then just scares me to death: "I can't find your baby's heartbeat. It might be too early, or something might be wrong. And I can't tell if you're miscarrying... you might be, but we can't tell right now. Get an ultrasound a week from now and see what's going on." This was not helpful. I knew I might be miscarrying, long before I went to the hospital. Rather than lobbying for more information, for access to a better doctor (an attending), etc., I let my feelings of depression and defeat overwhelm me. I give up, go home, and hope for the best.
Jan. 18, AM: I'm still bleeding, and getting very crampy. I call the OB office again and ask for help. Today, I don't feel pregnant (clothes feel loose, appetite is normal), which sets me into a panic. Take an already hormonal pregnant lady and make her afraid she's miscarrying... I was nearly in tears.
The tell me, "Get your primary care doctor to write you an order for an ultrasound to 'check viability'". Gosh, that sounds awful. And why can't they write the order for me? But no. So I call my primary care doc, in tears by now, and ask for the order.
Jan. 18, early PM: I'm having the test, and the ultrasound tech isn't saying a thing. And the room is quiet. No heartbeat to be heard. By now I'm convinced something is seriously wrong. The tech shows the pictures to the radiologist, who discusses the results with my primary care physician but tells me to follow up with my OB. God, can't anyone just tell me what is going on? Long story short, I call the OB to ask for help, and rather than help me, they call my primary care doctor and tell her to take care of things. (While this is all happening, I'm waiting, pacing, crying, wishing the damn phone would ring.) The bad news? My baby is dead, and has been dead for at least 10 days. I need to have a D&C to remove what's left of the baby. And the OB won't help me, because I'm not officially their patient yet (my new-patient OB appointment is still 5 or 6 days in the future). Why won't they help take the dead baby from my womb? Without their help, I can only get the surgery by visiting my local ER. It's a Friday night in one of the more dangerous cities in the U.S. Just great. I know it's going to be a long night.
Jan. 18, late PM: I head to a regional hospital, trying to avoid the Friday-night overload at the urban hospitals. I get there around 7, and am back home by 10, still toting the dead baby in my womb. Won't anyone help me? When I first arrive at the ER, a physician assistant tells me that they "don't normally do D&C's for miscarriages...", they just let nature take care of it. I'm in pain and need help, and this guy is just making me mad. Why won't they help take the dead baby from my womb?
To get to this guy, I first have to get through three levels of registration (intake person, intake nurse, charge nurse). And at every step in the process, I have to tell yet another person why I'm there, and recount my entire medical history to them. Even though I brought a nice, typed, concise medical history form with me... that was stapled to my paperwork and promptly ignored. It's humiliating to have to explain your weird medical history over, and over, and over again. And to struggle to even find the words to explain that you need someone to take out the dead baby that's in your womb. What do you call that dead baby? The remains? What's left? It was gut-wrenching.
By 10 pm, the OB doctor on call tells us to go home. She has numerous emergencies already in line. I will get the surgery the following day, and they will call me in the morning to tell me when to arrive.
Jan. 19: How can you sleep when you know you have a surgery the next day? And you're in physical and emotional pain about the reason for the surgery? So I'm up at 6 am, starving (no food after midnight), waiting for the hospital to call. The magic hour passes, and they haven't called me, of course. No one seems to want to take the dead baby from my womb. I am in tears, calling the hospital's OB surgical team. They have no idea who I am and have not scheduled the surgery. Freaking hell, man. The OB doctor on call finally calls me, and we have to start from scratch. Who am I? What's wrong with me? What procedure do I need done? It's the final straw. I nearly yell at the doctor when she asks me if I've had any previous surgeries. Ha, ha, ha. How much room do you have on your notepad, lady doc? I am so humiliated and embarrassed and feel so ridiculously homeless at this point... no one wants to help me! I'm lost and unable to get the help I need. It's heartbreaking.
I finally have the surgery later in the day, and all goes well. But the frustration and anger lingers on, still.