Category Archives: primary care

Learning To Be a Primary Care Patient

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I do not subscribe to the saying, “There’s no such thing as a stupid question.”

There are many, many stupid questions. So opposed am I to the asking of stupid (by which I really mean unnecessary) questions that I go out of my way to acknowledge that a really good question is just that when I hear one. It’s a delicate balance, being accessible and approachable and trying to instill independent thought and accountability at the same time.

Asking to clarify a particular point in an assignment prompt? Totally valid question, and likely a question others have, too. Asking when that assignment is due, when that information has been available in four places, hard copy and electronic, for weeks? Less valid.

You might wonder what any of this has to do with primary care (though I did just have a long conversation about the culture of instant gratification and unwillingness to dig around for answers when it is so easy to text or e-mail someone to do it for you with a pediatric nurse practitioner in primary care, and she had a lot to say…)

I digress.

No, this post isn’t about the downsides of technology, or the ramifications of all kinds of information, vetted or not, being available with little effort on our parts. It’s about what happens when a rare disease patient enters primary care:

She asks stupid questions.

Guilty as charged. (See? Aren’t you glad I didn’t totally jump on my soapbox earlier?)

After years of floating between specialists, I love having a primary care doctor. More than that, I really like my specific doctor, and his whole group, and I love that my primary care doc and all my other specialists are all in communication with each other.

But I’m still learning how to be a primary care patient. I’m used to disasters and calamities; I’m used to avoiding the hospital merely because I already have all the equipment at home. So this week, when I had some progressively painful jaw symptoms that were likely something very minor, I was hesitant to make an appointment. However, with several dozen ear and sinus surgeries, a major mastoid surgery, and infections that have impacted my jaw bone several times under my belt, it seemed worth checking out.

The earliest appointment was two weeks away, or I could make an appointment in urgent care. I hung up without making an appointment, because this wasn’t urgent, and I didn’t want to take up an appointment slot when they are acutely ill patients out there. It is H1N1 season, after all.

I was told by several people I was over-thinking the term “urgent.” So I e-mailed my doctor, cringing at the knowledge I was now flooding someone’s inbox with a stupid question (remember, guilty as charged): should I just wait the two weeks, or make the appointment?

“Urgent” is all relative to me, to all patients with chronic or rare diseases. To me, it’s how much blood I am coughing up that makes me consider contacting my doctor, not blood itself. It’s how much lower my peak flows are, not just that they’re scary low, or how erratic my blood pressure or pulse is, not merely that they are erratic. I don’t go to the doctor every time I am sick because then I’d always be at the doctor. In fact, I try to avoid it, because I don’t need the exposure to other germs, and I’m at the hospital for tests and maintenance enough as it is. We have a plan set in place, and we follow the script unless things get very serious.

Of course, there are extremes to this, and times I should have gone to doctor and I didn’t (hello, trauma room, if only I’d avoided you) and times I erred on the side of caution and ended up wishing I’d just dealt with it at home like I normally do.

But the point is, for many of us, the baseline we use for “urgent” is totally skewed. I’m not totally sure how to behave appropriately in a primary care setting, but I’m figuring it out as I go.

My doctor assured me my question wasn’t stupid. Maybe the real issue isn’t that it was an unnecessary one so much as I simply didn’t know how to answer it on my own—my experiences didn’t speak to this kind of judgment call in a helpful way.

Luckily it’s not simply my call to make, and asking a professional made it a lot easier.

Anyone else out there been caught in this kind of over-thinking when it comes to “normal” health stuff?

Primary Care and Chronic Illness–The Update

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Awhile ago, I wrote about the challenges of primary care when you are a patient with multiple (and rare) diseases…Or, as my friend Lyrehca says, when you are “clinically interesting.” I have specialists for several different body systems and they each provide fantastic care, but I don’t want to bother the lung guy with the GI problems, or the rheumatologist with the allergic reaction.

So, I embarked on a quest to find a primary care physician. I wanted my new doctor to be in the same hospital as all my other doctors, and finding a group that still accepted new patients proved daunting. Life, the book, and work got busier, and I let the search slide a bit. Then this summer I came down with mesenteric adenitis and was shuffled between specialists and eventually sent to the hospital. I came home re-committed to finding a primary care doc, someone who could have fielded that problem, and put my name down for an appointment five months down the road.

Well, that initial appointment recently happened, and it feels good to have someone coordinating all the moving parts of my care. My new doctor and I clicked; I felt comfortable talking with him, and I appreciated that he’d already become familiar with my case and had been in touch with my other doctors. Since they all work in the same system, they all have access to my latest test results and notes, and I’ve never had such efficient, streamlined care. The new doctor noticed some unusual lab results no one else had looked at—because they didn’t fall under their realm—and followed up on them. We made some important decisions about diagnostic tests for other problems, and I feel good about moving forward.

It’s been almost 20 years since I’ve had an official primary care doctor, and I told him I was worried about contacting the appropriate person for certain infections. Those of you with more experience negotiating this balance between primary care and specialists, do you have any feedback?

“With all you’ve been through you know your body best. Just trust your instincts,” he said. Sounds like a plan, indeed.

On a less personal level, I’d also like to circle back to the issue of universal health care in Massachusetts. As I mentioned before, part of the primary care shortage and the several months’ wait many patients find when they try to make an appointment is an unintended consequence of providing insurance to more people…and of course people without prior access to health insurance and preventive care are often most in need of primary care physicians. Anyway, according to this recent post on WBUR’s Commonhealth blog, Massachusetts now has the lowest rate of uninsured citizens in the country. This is wonderful news—now, let’s try and make sure each of those citizens can get an appointment!

Virtual Conference for Invisible Illness Week

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Just a quick reminder that as part of Invisible Illness Week I will be holding a virtual conference on Blog Talk Radio on Friday, September 12 at 3pm Pacific time. The topic is “Friendship, Dating and Marriage: Can You Keep It All Together When You’re Young and Chronically Ill?”

Directions for how to listen to the presentation online and how to call in and ask questions can be found right here. I hope many of you will call in and make this conversation more dynamic!!

Lastly, because I can’t just leave you without any good reading material, check out this Boston Globe article on a new study that shows numbers dwindling for primary care doctors. One of the major reasons cited? The strain of chronic disease patients.