coloNOscopy

No scopy for me today. Nasty little sinus/ear infection thing got in the way. On the plus side, at least I spiked a temp before I started the prep. On the down side, trying to get a straight answer out of my doctor's office on whether or not they'd go forward with the procedure if I had a temp today was like herding cats. "Anesthesia might not want to do it..." was the best I could get out of them. Oh that and "Call your PCP". My PCP was not impressed with the turf - the nurse practitioner very strongly felt whether or not I should proceed even with a temp wasn't her call to make. And I can't say that I blame her.

Ultimately, I decided that if there was a good chance the anesthesiologist was going to tell me to take a hike and that I would have gone through the pain in the ass (ha, get it) of a full prep for nothing, I was going to bag it.

crazy pills?

I was talking with a graduate student in my program today and medical stuff came up. She's had a run of bad health in the last few years - being diagnosed as needing heart surgery and then had acute and quite bad GI episode (likely due to or exacerbated by a series of intestine slowing drugs a presumably well intentioned but apparently moronic provider put her on). She's finally coming through the worst of it, got herself a good set of doctors, but is now dealing with the aftermath. Good lord do I know about aftermath. And the "waiting for the other shoe" feeling that's always lurking.

As we were talking, she mentioned that she's found it unbelievably difficult to find a good doctor here in our state. Here I thought it was just me. I had chalked my impressions about the current state I live in and the difficulty to find providers who were not jerks from the word "go" or marginally competent up to various subjective experience - such as my having been married to a doctor, the daughter (and niece, and granddaughter) of a nurse, or being a hospital staff member (and thus able to get the low down on a variety of doctors and practices). But here it seems my impression is shared by someone who has no such history, other than her also having lived in a state other than this one.

So let me just say, for the record, I'm not on crazy pills. Connecticut sucks for doctors and I can't wait to MOVE out of this miserable state. I guess if I had to put my finger on a probable reason, I'd say it's something like a population, community, and government overrun with rich, socially apathetic people do not attract good residents, be they medical or otherwise.

my little "friend"?

I think I should name the cyst on my left ovary. "M" names spring to mind. Martha? Or maybe Medea, seeing as it's caused me some trouble. Yes. Medea it is.

I suspect Medea's at it again. I had a pelvic and abd CT on Wednesday because, well, because I'm bleeding. Very lower GI bleeding in fact. Oh ok, I'll stop pussyfooting about. I've been bleeding out my butt and not a little. I can't imagine how that must be for guys who bleed out their butts. As a woman, I am somewhat used to seeing that much blood in the toilet now and then. Granted, knowing that it is coming from the wrong side is problematic, but I imagine the whole visual would have to be more shocking for a man. At the insistence of my new primary and my sister, I finally made an appointment to see a new GI doctor. They seem ok.

The rectal exam showed no fissures and no 'rrhoids (as a friend of mine used to delicately call them), but I had a very painful external pelvic exam. This is not unusual, I explained to the nurse practitioner who did the exam. I've been having daily pelvic pain for a couple of years now. I wear lose pants and skirts. It helps. And providing it's not the dropping me to my knees pain that sometimes flares up, I can deal more or less. Currently, I am assured as I settle into my IUD, I'll feel better. It's better, but it still hurts.

The nurse at the GI office was feeling a little uncertain about the pain. I don't think my adding in things like "hey you have diarrhea every day for 2 years, you're probably gonna bleed out your butt" reassured her.

I was really expecting the CT to be negative. I truly was a bit taken aback when the GI doc's office called on Friday (of course on Friday) to tell me that the GI doc wants an ultrasound for a "pelvic cyst". I said "Uh, is it gynecological?" The woman on the phone was evasive.

While I am not 100% satisfied with this response, I do understand the need for it. Imagine if the call had gone like this instead:
"Hey Ms. Hygeian, this is GI doc's office calling. Your CT showed a pelvic mass. Oh don't worry, it's probably not a tumor but the doctor would like you to have an ultrasound to make sure, ok?" That would alarm most people. And I get that.

However, if this is Medea, I don't think we need to give her more face time than she's already gotten. She's been there for a while. Medea's been such a pain in the ass, or rather side, that at my pre-lap appointment in May, I told my GYN to please take the whole friggin' thing, ovary and all, if it looked even a little ugly. I was told they like to leave as much as they can, the whole thing if possible. Apparently Medea didn't look too ugly to them, and so she remains. At several pelvic exams before and in the one since the surgery in June, someone has always remarked "hey you've got a cyst on your left ovary." And every time I say "Yes, this seems to usually be the case..." (or similar).

The lack of alarm from the GYN people seems to suggest that Medea is nothing to be concerned about. Right? Not that I know it is Medea, but I do strongly suspect it is. I think I also hope it is. Because while the diarrhea and pain suck, the thought of a mass which is not Medea sucks a lot too. I do realize that telling myself it is Medea is a way of making myself feel better about that concern. I'm quite aware of that. But I'll take my strange comforts where I can get them.

Medea has freaked some folks out in the past. I had a pelvic exam many many years ago at a primary care doctor's office. She felt Medea and sent me off for a stat ultrasound. Within minutes of the exam, I was careening down the highway chugging as much water as I could get in.

So when I asked "Is it gynecological?" on Friday, I was asking "Is it Medea?" because I'd like to put them in touch with the GYN if it is and they can chat about whether or not I really need this ultrasound. Because ultrasounds kinda suck a bit, and really, who needs unnecessary suck? Not me.

While all the online stuff says ultrasounds are not painful, I think that they should add the caveat that drinking and holding that much water for an hour is at least quite uncomfortable. Add in a cold waiting room and it can become painful, not necessarily highly but quite unpleasantly. It's going to be a lot of water. This imaging place has very ambitious preps. I am to drink 48 ounces of water an hour before the ultrasound and hold it until the exam is over.

So....we'll see on Tuesday. Or rather, they'll see on Tuesday. I'll probably know on Friday (again).

medical record

When my former primary was leaving her practice, I was told there wouldn't be a charge for my record if I decided to go to another office for primary care.

Today I was told that the people who took over the practice (Mr. and Mrs. Doctor) do intend to charge me to obtain a copy of my medical record.

I questioned the fee Mr. Doctor wanted to assess and was told this is what Mr. Doctor charges for copies of "his" notes.

Prior to this, I've only ever had one doctor's office charge me for copies of records and that was the unbelievably jerky guy I saw for a couple of months back in 2002/2003 (the one who assumed I thought I had "chronic Lyme").

While the cost is less than a buck a page, which sure doesn't sound like much, little charges add up when you're as broke as I am (I make $125 a week right now. In the Fall, if I'm lucky, that'll go up to about $250 a week).

On a whim, I looked up cost, medical record, my state name, and law. It took very little time to find out that although it's perfectly legal for a provider to charge fees to cover the cost of copying and paper, there's a cap on the amount which can be charged to a patient. This varies by state, but in CT it is 30% less than what Mr. Doctor is asking.

From Georgetown University's Center on Medical Records Rights and Privacy - Connecticut

And from the source itself, CT statute - Title 20, Chapter 369, Section 20-7c

It's a match!

I just got back from my appointment with the potential new PCP. I think I found a match. Her office staff are friendly and efficient. And I liked her a lot. Very down to earth, and we just talked today. She told me about herself and stuff like who covers for her and when, how long I can expect to wait should I need to see someone urgently, what hospitals she is affiliated with, her policy on referals ("I might have someone I'd recommend but if you have a preference for someone else, that's fine too. I'll work with pretty much anyone").

We talked about Lyme disease and where she comes down on the "controversy" - nicely her view seems compatible with my own.

We talked about why I fired my last GI doctor(s) and she agreed that it is reasonable to expect a doctor to treat the whole patient rather than a single organ of the patient. She also said she could recommend a new GI doctor if I didn't have anyone in mind.

Some of the other doctors I see (ortho and GYN) came up. Both were people she had heard of and respected a good deal. Apparently my GYN is "famous", didn't know that. I knew he was good mind you, but not famous. So yay for me for researching him. It's sort of validating to have a doctor tell you that the people you chose to see for your health care are the people who are the most highly recommended in the area.

And she was just, well, cool. I like her demeanor. I told her that I used to have no problem with health care providers but since the Lyme I've developed a sort of low level distrust which rears up now and then, and that when I'm stressed I tend to get angry. We talked about this a little, I explained I see a psychologist for it, and she also recommended a book if I was interested.

We left it at I'll call and send over my record if I chose her to be my new primary. I'm pretty sure I will.

Finding a primary care

Since I'm about to see a potential new primary care doctor tomorrow, and since I'm (um...) picky, I was doing some quick research on how to get the most out of a first appointment. I've had some bad experiences, mostly from trying to get by with a doctor who is not a good match for me, so I wanted to see how other people (professional and not) go about making this decision. Putting it in terms of good and bad "matches" sort of makes me feel like I'm going on a blind date. Which is a little odd.

Below are some selected sites which seemed to offer some sound sugggestions on finding and choosing a primary care doctor.

From In My Humble Opinion: "...A bunch of advice on picking and interacting with primary care doctors. Subtitled…Things I wish my patients knew"

From the Georgia state medical board: "Tips on Choosing a Doctor"

From Scripps Health: "Choosing a Doctor Who's Right for You: Communication is the Key"


As is noted in the Scripps Health article, some of the qualifications/education/training info you might want to know can be found on hospital websites. E.g., I live in CT. The big hospitals closest to me are Hartford Hospital, St. Francis, and the UConn Medical Center. There are also a few smaller community hospitals nearby, two of which are in the same "health network".

Each of these hospitals and/or health networks maintains a website which you can usually find relatively easily by doing an internet search for that hospital. I've found that often the search results include results for physician directories or "find a physician" pages offered through the hospital website.

very private medicine

(excerpted from The Boston Globe)
MDs offer new services, for $3,600 yearly fee
By Liz Kowalczyk, Globe Staff
June 30, 2007

Two popular Boston internists are closing their busy practices, leaving most of their 7,500 patients to find new doctors, as the physicians open a small concierge practice that will charge individuals a $3,600 yearly fee to join.

Dr. Jeffrey Bass, 50, of Brigham and Women's Hospital, and Dr. Ronald Katz, 51, of Beth Israel Deaconess Medical Center, are the latest physicians to give up large traditional medical practices, in which doctors see a patient every 15 to 30 minutes, in favor of a slower pace and potentially higher income.
....
Concierge medical practices, despite criticism that they shut out all but the well-off, continue to attract doctors and many patients who say the practices let physicians provide more personal care in an unhurried atmosphere.

Some of the extras Bass and Katz are promising were once considered standard parts of a doctor's portfolio, but now, most primary care doctors say they are too busy to provide them. Most notably: visiting patients in the hospital, same-day appointments, and nearly around-the-clock access to their doctor.

"I understand why the doctors are doing it," said Dr. Richard Parker, medical director of the Beth Israel Deaconess physician organization. "They want more time with patients, fewer hassles, to get paid better. But it's a symptom of the poor state of affairs in primary care; many doctors are looking for the exit."
...
Bass and Katz, who plan to open their new practice in September, mailed letters to their patients and created a website explaining the change earlier this month. Katz said his new practice, to be called PersonalMDs, will allow him "to practice a bit of old-fashioned medicine" at a "less intense and frenetic pace." He works about 55 hours a week now, he said, and sees 25 patients a day. He expects to work a similar number of hours, but see far fewer patients daily, and the practice will accept only 800. Among the services Katz and Bass will offer are long visits, "24/7 availability," a waiting room with Internet access, a yearly consultation with a nutritionist, and home visits.

Bass said he expects to have 400 patients signed up by next week, "which shows me there's a need and want." A number of his patients are doctors, he said, which "validates the model."

new PCP

Why does it seem that a patient is supposed to assume all doctors are not only equally qualified but equally a good fit with them? I don't think this is just me, although I'd be hard pressed to put my finger right on what (other than my own experiences) has informed this opinion. I'll have to think about that. For now, here are my thoughts on this implicit and possibly overly subjective impression.

I realize there are institutions and agencies in place to ensure that all licensed physicians meet a minimum standard of quality and ability. That addresses the qualification issue somewhat, but what about the second - the issue of a good fit between patient and doctor? I don't assume a doctor's certifications, license, and other professional qualifications means that we will be able to communicate and work effectively together. This perspective seems quite reasonable to me. And yet you can't make an appointment to interview a doctor. At least you can't with my health plan.

These things are on my mind because I find myself in the very unpleasant position of needing to find a new primary care doctor.

From January of 2004 until April of this year, I had a great primary care doctor, Dr. C. I found Dr. C in 2003 when she was my (ex)boyfriend's attending while he was inpatient for a quite unexpected attack of pancreatitis (though I guess few people actually expect pancreatitis). The consulting GI who saw my boyfriend at the hospital had ruled out cholelithiasis on the basis of a low but within normal limits ejection fraction on the HIDA scan. However, the bloodwork, history, and symptoms all sort of kept pointing to that. When my boyfriend was discharged with no real diagnosis, Dr. C suggested a second GI appointment with a different doctor. One outpatient GI doctor visit and an MRI later, the gallstone was confirmed.

After this, my boyfriend and I both went to Dr. C as our primary care. Her refusal to accept a write off by the first GI doctor was not the only basis for my decision to see her as my primary care doctor but it did factor in significantly. To me it meant she was willing to consider other evidence rather than sign off on one somewhat equivocal test result in the face of still unexplained symptoms.

Dr. C was not super warm. No one would call her effusive. She was direct and respectful, no nonsense (as in taking or giving none), and as I got to know her I realized she had a nice slow burn sense of humor. She listened and she took note of the things you said outside the official answers to the official questions. She remembered things like my brother being HIV positive, my family history of autoimmune disease, and that I had mentioned my sister had found a lump in her breast around the same time a good friend was diagnosed with breast cancer.

But she moved out of state in April and now I must find a new PCP. She gave me the option of transitioning to the people who took over her practice - a married couple, both family or internal medicine (I haven't looked them up, yet). I was uncertain about committing to this since the office is a little far away from where I now live. The only reason I kept going there since I moved was Dr. C.

I put off looking for someone but then I had surgery and you know, it sort of reminds you "hey I probably ought to find myself a new primary care doctor". So a few weeks ago, after doing some research online, I made an appointment to check out a potential new PCP, a woman who practices a few towns over. Let's call her Dr. Y.

Unfortunately, I had reason to see a doctor this week, well before my appointment with Dr. Y. This brings me to today. Today I saw the husband of the couple who took over for Dr. C.

At one point he said "You use medical terminology...why?" He said it quite neutrally but I felt like I had to defend something. I hadn't recalled saying anything overtly medical except that I had recently had a laparoscopy. I wondered if that was it. And I wondered do most people say "I had a tummy operation" or "They done dug into my lady junk"?

When he noted my low blood pressure, I didn't declare "Indeed, I am usually rather hypotensive". I just said "yeah it's usually kind of low". My point is that I don't aim for pretension.

Since today's appointment wasn't in a "getting to know you" context, I hadn't had a chance to give my "why I know medical terminology so please don't think I'm a freak" speech. It's not like I have nothing better to do than sit down and memorize this stuff, and I think it's important to mention this because otherwise people will assume. When he asked why I used medical terminology, I figured I needed to make sure I gave him enough info to dispell those potential assumptions.

I explained quickly "I was married to an ER doctor for 5 years and my mother was a nurse and I worked as a unit secretary to pay for college..." I said it all really fast, like a kid who was caught by his parents skateboarding without a helmet or holding a pack of cigarettes - "I swear they aren't mine, it was Josh's idea 'cause he took them from his older brother Mike and I didn't even know he put them in my bag!"

New doctor had a minimal response.

I sort of feel like we didn't hit it off. This impression was reinforced when he went to push on my "belly" although my reason for being there had little to do with that part of my anatomy. I reflexively moved my arm to block him, saying "please no, not unless you really must." At this point, I should mention I had already told him I was still having cramps even on 400 mg of celebrex a day and that I hadn't stopped bleeding since the surgery (I had a Mirena IUD placed during the operation - otherwise a month of blood and pain post lap would probably be more alarming). A little warning maybe, some kind of "hey I know you're in pain but I need to poke around a bit.." would have been good, respectful, and a sign that he had actually heard what I said when I was talking.

So I kind of came away thinking I'm definitely not cancelling that appointment with Dr. Y.

I know I'm a kind of patient who can be a pain in the ass. I know it can be difficult to have a patient who had a recent case of somewhat hard to treat Lyme disease, who has endometriosis on her bowel making for confounded GI and GYN symptoms, who has autoimmune disease lurking in her family, bloodwork, and physical presentation, and who watched way too up close and personal a group of people go from being little doctorlings to full blown attendings.

I know how I'm seen as a patient to some doctors. I know because they've told me. But I don't think because some people I didn't like or feel comfortable with didn't like me in return means I am a bad patient. My sense is that sometimes there is just what they call "a failure to communicate" brought on by an unfortunate intersection of incompatible personalities and personnas. All these doctors are people, regular normal people who also happen to practice medicine. And I'm the kind of person who people either really like or really dislike. I'm the kind of person who can seriously rub people the wrong way. Makes sense I'm that kind of patient too.

All the more reason why I shouldn't burden this poor fellow with someone he's quite likely just not quite up to dealing with, right? His taking me on as a patient is a lose lose situation, the way I see it.