As Bryan says in a comment on my previous post, “you do get better care from such big institutions precisely because so many different people with such specialized expertise can be involved, but the more of those resources you have the harder it is coordinate and monitor them to ensure that they work properly.” With that point in mind, my own story, told at some length for a particular purpose:Six or seven months of increasingly regular abdominal pain eventually led to the removal of my gall bladder — my “huge, completely dead gall bladder,” as the surgeon so neatly described it — in February. I thought my troubles were over, but after a few weeks my symptoms started to return. The days before Palm Sunday were increasingly bad. I called my excellent gastroenterologist, Stephen Chang, on Monday and he had me get some blood work done. By Wednesday morning jaundice was showing, which my bilirubin levels predicted. It was an obvious diagnosis: a stone from the gall bladder had worked its way into the common bile duct, something my surgeon had warned was possible, and was creating havoc. Dr. Chang asked me to come in to CDH the next day for an endoscopic procedure to have it out — then, an hour later, called back to ask if I could come in that afternoon. I did.He said that 90% of the time ERCP is successful; he also said that in a very small number of cases the procedure itself can prompt an attack of pancreatitis. If the latter happened, he said, I would know: pancreatitis is “not subtle.” In my case the procedure was unsuccessful, so Dr. Chang immediately got on the phone with a major specialist at the University of Chicago, Irving Waxman — who, as should be obvious from his name, turns out to be from Mexico — to see when he could take over. Unfortunately, just a few hours later I discovered that I was among the lucky few to pick up the pancreatitis.Rarely has there been an understatement to match the observation that pancreatitis is “not subtle.” My entire abdominal cavity throbbed as though Saruman had set up a supplemental Uruk-Hai-making facility within it; every muscle in my back went into spasm. My wife Teri drove me to the ER, where they rolled me into a wheelchair; when I finally got in to see the triage nurse, the convulsive vomiting began. I would have been white as a sheet had it not been for the bilirubin, but, Teri tells me, the absence of normal skin tone made my brilliant yellow stand out all the more.On the other hand, to be a doubled-over, groaning, violently shivering, bright-yellow vomiting guy is an excellent way to get moved up in the triage rankings. So I got medicated and got into a room before too long.I spent Thursday receiving antibiotics, saline solution, anti-nausea meds, and pain meds. I slept through much of that. On Good Friday an ambulance arrived to take me to the University of Chicago Medical Center for a more advanced form of ERCP with Dr. Waxman — which now seems to have been fully successful. About noon on Easter Sunday I was released, and I have been resting (mostly) since then. I am still pretty weak, but I’m not very yellow any more and a blood test done yesterday confirms that the various chemical levels are all moving in the right direction, though none of them are what they should be. Teri has been incredibly kind and attentive to me. I got great care from everyone involved.But remember what I said in my last post about the absolute necessity, in this absurdly complicated system, of having an advocate? And remember what commenter Brian said about the difficulty of coordinating and monitoring such high-level services? Well, I had in Dr. Chang just such an advocate who did all the coordinating for me. Just look through the previous narrative and think about how things might have turned out had he not been assertive, persistent, and knowledgeable. So while I owe debts of gratitude to many right now, I think I owe my greatest debt to him. Thanks, Dr. Chang!
I don't know much about all this health care stuff, but I do have a close friend who is a general practitioner/family doctor, and the few things he has shared about his work are that docs like him want to be those advocates. Too often, though, patients like me want to skip that general practitioner step, because we see the referral as an extra and unneeded cost (that was always how I saw it, anyway–if he's going to send me on to a surgeon, why not just go to that surgeon?)
But as general practitioners, they are one of the few doctors who will consider the broader picture, and while they will often refer their patients on to other doctors to work on particular problems, they follow up each referral and track how it all went. I was pleasantly surprised to find after an endoscopy of my own that the family doctor who referred me to the GSI doc had completely reviewed my file and was totally informed about the procedure immediately following it. My GSI doc doesn't follow all my problems, just the gastrointestinal things that brought me to him. My family doc, however, tracks every piece.
All that to say that your story nicely shows that if we are not silly tough guys who refuse to go to the doctor and build a relationship with the folks at the clinic, we may be able to find for ourselves that all important advocate.
I've written a lot about the health care debate, as you know. But when it comes to stories and observations like your own, shared here and in the last post, I'm in the same boat as everyone else. I'm very happy to hear that you are on the mend, and I'm grateful that you had a friend you was able to combine knowledge of the system with advocacy for your cause. Would that we'd all have that!
"Would that we'd all have that" is precisely the point to take away, Russell — and why I began with my stories about the two elderly men I met in the hospital. Though I do think that someone was beginning to take charge of Mr. P. (it may well have been one of Dr. Chang's colleagues, Dr. Rafael Piedra, who is also first-rate) I'm not sure, and in any case there are just way too many people who don't have, who don't have a hope of getting, such an advocate as I had. I don't know what can be done about that.
One of my dad's friends told some stories about being an advocate for his wife. She's about 4'11, and weighs 99 pounds. He's pretty sure he's saved her life a couple of times by preventing doctors from over-medicating her with standard dosages.
One of our son's occupational therapists was advocating for her mother, who had gone from bad to worse in the hospital through some staff errors. (Ended up in a rehab center, temporarily, at least.)
She told me that a sibling in any family who is any kind of a medical professional ends up being the advocate for aging parents in the health care system.
I also have to say that having some limited experience in this area myself has enriched my reading of the Bible verse "we have an Advocate with the Father."
Alan, I am reminded of a client I had when I was working in eldercare in Boston. This woman was 75-ish and aging in her own apartment, living independently with the support of a son and formal services that brought her meals and cleaned her apartment. She had some difficulties with mobility and ambulated slowly, but she could walk unassisted in her home.
I took a leave of absence from my job while my husband was doing a summer internship in Chicago and returned to Boston in September. My caseload was managed by a Master's level social worker while I was gone. My client also had her adult son, her homemaker (housekeeping services), and a few friends from church who looked in on her.
When I returned, I was surprised to learn that my client was in the hospital. I visited her there and was shocked to find her completely bedbound, unable to ambulate or sit up at all, completely unable to speak, and barely able to move even her extremities without much difficulty. I spoke to the nurse on duty and, eventually, to several of the medical staff on her case. I discovered that the medical staff currently caring for her had absolutely no idea that she had been living almost entirely independently merely three months before. The information I provided regarding her recent abilities eventually led to a diagnosis of ALS (Lou Gehrig's disease). Sadly, none of the informal and formal supports in my client's life had been able to advocate for her in such a way as to offer any case history. The medical staff had assumed that this woman in her 70s had been bedridden for years.
Your observations are excellent, Alan. It is essential for every patient to either a) be able to advocate for him or herself, or b) have at least one person able to advocate on his or her behalf. Without one or both of these resources, a patient may easily receive very poor care.