Signs of the times
I’m recovering from a four-day stay in a local hospital a couple of weeks ago. While there I was in three different rooms. That partly explains why I was so tired and worn out when I came home. But it doesn’t begin to tell health care’s story these days.
Before going to the hospital, I’d been gaining weight and developed increasing swelling of my legs, which spread to my abdomen. With almost any exercise, my heart began beating rapidly. I had no pain, felt well, had been sleeping well, and had only the slightest shortness of breath with exercise. Naked, I looked grotesque.
My informed medical theory was that primary heart disease wasn’t the culprit. My myopic, personal theory was that the problem was dietary. I didn’t want to gain weight and had been mostly eating soups with loads of saltine crackers because I was chronically hungry. I also ate fruits and vegetables and some meat. But I began wondering if I might have a malignancy in my belly that was blocking blood return to my heart and producing the swelling.
I arranged to see my physician, a long time professional friend who knows me well. A cardiogram in his office showed that I didn’t have Atrial Fibrillation, the heart rhythm problem I’ve sometimes been plagued with. So he referred me to the hospital. Then all hell broke loose.
My physician no longer provides in-hospital care. That’s done by hospitalists, physicians who work for hospitals and only treat hospitalized patients. In many hospitals, hospitalists change their patient load daily. Though I was ‘fortunate’ to have the same one responsible for my care for three days, we didn’t know each other any better the day I went home than the day I arrived.
I met him soon after I was admitted. I was cold and scared. My blood pressure was elevated. He made a quick decision that I had hypertension and ordered three blood pressure medications. After I warmed up and relaxed a bit, my pressure returned to and stayed normal.
But I continued taking the three blood pressure medications. They produced their own, unique problems by increasing my instability. In the hospital I felt weird and teetered and tottered like an inebriate.
As I’d hoped when I saw my physician prior to entering the hospital, I received a number of tests to get to the root of my problem. There was no suggestion of tumors in my abdomen. An ultrasound exam of the heart showed right heart failure, a condition almost unheard of in patients who don’t also have left heart or congestive heart failure. I have no symptoms of that.
There is no specific medical treatment for right heart failure. The swelling in my legs and belly most likely came from the saltine crackers I’d been eating for weeks, plus the water they retain. My veins have been returning more blood to the heart than it could handle. it’s been backing up and producing swelling. DUH!
The hospitalist also consulted with two cardiologist-specialists. One was an electro-physiologist for my heart rhythm problem. I had been seeing a different one in the same practice, but he had me see a new one without explaining why. My heart rhythm medication was changed. The other sub-specialist cardiologist was new to me. I never got clear what his future role might be in my care. By then I just wanted out of the hospital. I was no longer getting rapid heart beats with physical activity and my swelling didn’t seem to be getting worse.
So I was sent home with a different heart rhythm medication and three new blood-pressure medications. Shortly after arriving home I discontinued taking them. The hospitalist instructed me to follow up with a physician’s assistant I don’t remember meeting in the hospital, who works with the new cardiologist. I cancelled the appointment. I didn’t see how he was going to help me understand what the hell was going on or lay out a plan for managing my right heart failure.
The next day I called back and asked to talk to the nurse who works with the electro-physiologist cardiologist who has been taking care of me for several years. In the past she’s been very helpful. Brittany, the scheduler, told me I couldn’t possibly do that.
So I made an appointment with the newest cardiologist for two weeks from now. I decided to take a page from my book of advice to those who are bewildered by what passes for organized medical services these days.
I’m going to ask questions of the new cardiologist until I get a coherent plan for care. One that I understand and can follow. Health care today is a contradiction of two conflicting, often incompatible notions.
It’s an intimate, personal relationship between a particularly trained and experienced care giver and someone who needs the service.
And it’s also an intolerably expensive, dangerous and error-riddled enterprise badly needing to be systemized to provide safe, necessary services in a timely fashion.
Unfortunately, those designing the systems and their rules and regulations don’t have a good grasp of the personal aspects of caregiving and receiving. And care givers aren’t adequately trained in system process engineering and management.
It’s maddening and frustrating for caregivers stuck in a “system” they can neither manage or control. And it’s the same for us who receive and ultimately pay, with our lives and dollars, for inefficient, shoddy services.
I’ll continue doing my part to encourage readers to tactfully, assertively ask questions and demand active roles in understanding and making their health care decisions. When push gets to shove, sometimes I remind them they’re working for me.