Professional Patient

Tips for Surviving the ER

Last Tuesday, I went to the ER with numb/tingling arms, legs, wooziness, headache, and rapid waves of prickly nausea. After checking in around 2:30 pm and having basic bloodwork drawn at 3-something, I finally saw a doctor around 8 pm. They told me I had hyponatremia (low blood sodium level)... very dangerous. It can happen when you drink too much water too quickly, or when you get dehydrated. They gave me IV fluids and kept me overnight, then sent me home with instructions to limit fluid intake and follow up with my primary care doctor.

This little ER visit reminded me of useful tips anyone should keep in mind when visiting the ER:

1. Expect to wait. Most people are not seen right away. That's so people who deserve immediate attention (car accidents, gunshots, heart attacks, strokes, burns) can get the help they need. Don't take it personally. And don't take your impatience out on the nurse or clerk trying to help you.

2. Be clear about your symptoms. Now is not the time to underplay your symptoms out of some sense of macho bravado. Be honest. That will help them decide how urgent your problem really is.

3. Take food and drink. If you are only sick (i.e., don't expect to need emergency surgery), take gatorade and some kind of small snack. Anyone who is already sick will only get sicker if they try and tough it out for 6 hours in a waiting room without food or fluids.

4. Take your insurance card. This is a duh! Even if you run out of the house in your PJs, make sure you or the family member coming with you has your insurance card.

5. Notify your primary care doctor before going. I called my primary doc to ask if she thought I should go to the ER, and when she said yes, she also called ahead to the hospital to notify them of my situation. It didn't help me get treated faster, but they at least knew my name when I checked in.

6. Take a list of medications and past medical problems (major illnesses, surgeries) with you. I have one that I typed on a piece of paper and folded down to fit in my wallet. Every nurse and doctor I handed it to (and there were many) said "I love when patients have this information ready for us."

7. Jot down the progression of your symptoms - the ones that led you to go to the ER. This is something you can do while you wait, or before you get in the car and drive to the ER. Sometimes symptoms start small and get big, or start in one part of your body and move to another. This kind of information can help doctors know what your problem is. Bring your notes to the ER with you and read them to every doctor or nurse who asks why you're there. That way you don't forget anything, and everyone you speak with gets the same information. And if you're too tired to talk, you can hand your notes to the doctor. 

8. Ask people to clean their hands. Everywhere I went, there were signs reminding staff and visitors to clean their hands before touching or being close to patients. You don't want to pick up MRSA or the flu while you're in the ER. It's OK to ask people if they have cleaned their hands, and to make them do so if they have not. 

Eat Right and Lose Weight: A Letter From My Family Physician

My primary care physician, Dr. G, is a lovely man. If you see him for an annual physical, he writes a lovely, detailed, personal report about the visit and mails it to you within a week. Dr. G dictates the note, and his secretary then types it on an old Selectric typewriter. It's seriously old-school, but refreshingly human.

What's amazing about this system is the personal tone Dr. G takes in these reports, and the amount of direct advice he is willing to give. Many doctors these days are less personal and less willing to deliberately recommend one course of action as the solution to a patient's problem. It really does make you think: do you want a primary care doctor who gives you lectures and advice, or one who presents you with an array of options and leaves you to choose one on your own?

Recently, an annual physical report from Dr. G pointed out the need for one of my family members to lose weight and lower cholesterol levels. Dr. G's report gives some basic but essential advice that we could all stand to follow. Some striking excerpts are shown below, for your pleasure and amusement (Dr. G has a funny way of writing):

Excerpts of annual physical summary report

During your comprehensive evaluation on the 11th, we again confronted your EXCESS WEIGHT and HYPERLIPIDEMIA.

Your physical exam finds you looking well, were you not so heavy.

Your daily life is not completely sedentary. You do have stair use and a dog to walk. Your two cats walk themselves.

If you were to lose the 75 pounds of excess weight you carry, your lipid numbers might return to normal. Your risk for coronary disease would diminish greatly. If you can pass a cardiac stress test, you should enter into a regular exercise program everyday. It can be as simple as walking everyday or it can be organized multifaceted exercises. Your diet should be fruit and veggies and the low animal fat proteins with a minimum of sugar and starches. Diet need not be complex... more like boring. Decide what meals to eat and stay with it. Beware of liquid calories. Beware of celebrations and excuses. Be honest and true to yourself and you can make your future a much safer place.

You are no doubt a busy person, but not too busy to assert control over your own health. No one else is going to do this. It is not going to happen for you unless you take charge. You can do so, and it never gets easier as time passes. You need to make a permanent change in your lifestyle, primarily of diet and exercise, and learn to like it. It is a need which will last a lifetime, which will hopefully be significantly longer and healthier, should you do as you must. Please make your best effort. I look forward to following your health.

Things Not to Say to a Sick Person with a Genetic Disorder

Wow, doctors can say ridiculous, insulting things. Two real winners I heard about from friends:

1. "In spite of your genes, you seem quite intelligent."

A doctor said this to a patient. Can you imagine? The patient should have replied "In spite of your medical degree, you seem profoundly stupid and ill-mannered!"

2. "If I saw you on a bus, I wouldn't be able to tell that there was anything odd or wrong about you."

A doctor said this to a patient. Again, can you imagine? The patient herself commented that she should have put her hands around the doctor's neck and asked "Can you tell now?!?"

I've got to add these horrible examples of bedside manner to my list of reasons to change to a new doctor.

Got any winners from your own experiences? Leave a comment!

Questions to Ask When Your Doc Gives You Homework (Tests, X-rays, etc.)

Two full weeks ago, my rheumatologist ended my appointment by giving me a LOT of homework: get a contrast CT of my lungs, an MRI of my parotid glands, and have several tubes of blood drawn. By this point in my day, I was too tired to ask questions about the tests and bloodwork. But I should have! I've wasted the past two weeks being confused and encountering roadblocks as I try and get all these tests done.

The questions I should have asked about the tests, etc. that the doctor ordered:

Reason for the Test

• Why do I need the test? What will it show us?

Nature of the Test

• What does the test involve?


• How long does the test take (an hour, a day, several days)?


• How will the test make me feel?


• What will be done to make me comfortable during the test? Will the test hurt?

Cost Control

• Is this test absolutely necessary?


• Is there a less expensive test that will show us the same thing?


• Is there another way to get the information we need?

Preparation and Follow-up

• How do I prepare for the test? (Are there special steps I need to take?)


• Is there anything special I need to do after the test when I return home?


• Do I need someone to drive me home afterward?

Risks/Rewards

• What sort of negative side effects might occur while/after I have the test?


• Who will interpret the results of the test?


• How could the results of the test change/improve how we treat my condition?


• Is there anything in my medical history that complicates the test or makes it more dangerous for me?

Timing and Scheduling

• Where should I go to have the test? (Get a specific name/location and phone number, if possible.)


• Will this test be done in a hospital as an inpatient, in a hospital as an outpatient, at a doctor's office, at home, or in another medical office/laboratory setting?


• How do I schedule the appointment? (Do I need to, or can I just walk in?) Will your staff make the appointment for me, or do I need to make it myself?


• How soon after the test will I be able to go home?


• How soon do I need to have the test done?


• When will we see the results of the test?

If I had asked these questions during the appointment, I wouldn't have had so many problems with scheduling and preparing for each test!

For example, I've stumbled around trying to figure out where to go to have both the CT with contrast and the MRI. Once you have surgical titanium hardware in your body, it can be more difficult to get an accurate MRI because the hardware casts a shadow or "halo" on the images, obscuring some of the rest of the picture. So your doctor may want you to go to a specific kind of MRI machine (a machine with a specific strength magnet.) Also, in my area, it's a little difficult to find a place that is willing to do a thoracic CT with IV contrast.

I've also struggled with preparation... I may or may not need to take a prescription medication to ward off any ill effects of the contrast solution used for the CT. My CT is scheduled for this Friday, and I'm still making phone calls and sending emails, trying to get this question answered. Yikes.

Related Resources:
Medline Plus: Laboratory Tests from the National Library of Medicine
Medline Plus: Diagnostic Imaging (that's what medical folks call CTs, MRIs, and other techniques that take pictures of your body), from the National Library of Medicine
The Medline Plus Medical Encyclopedia, from the National Library of Medicine, offers information about many common tests. To find the test you want, ask your doctor to give you the exact name of the test. Then click the alphabetic section of the encyclopedia that should contain the name of your test. So to find information about a "thyroid stimulating hormone" test, click on the "T - Tn" section of the encyclopedia (because "thyroid" falls alphabetically between T and Tn." On the next page that appears, scan the list for the name of your test. Click on the name of the test to view full information about it.

When Is It Time to Change Doctors?

On cnn.com today, author Dr. Jerome Groopman gives five key reasons to "fire" a current doctor and search for a new, better one. They include problems in fundamental aspects of the doctor-patient relationship: being able to ask questions, feel listened to, understand what the doctor is saying, and feel like you "click" with the doctor.

This topic really resonates with me, because, in the past year, I have completely reconstructed my health care team... new primary care doc, new neurosurgeon, new dentist, new eye doctor, new rheumatologist, new ENT, new pain specialist, new PT, new OB/GYN. I'm not kidding. I was dealing with several major crises at once, and various individuals in my existing cadre of docs failed me in countless ways:

1. By not being well connected. My primary care physician was a lovely, charming family doctor who listened well, cared about my situation, but was woefully unconnected with the right kinds of specialists. He belongs to a managed care group based around St. Agnes hospital in SW Baltimore that refers everyone "internally" to other docs in SW Baltimore who are managed by the same group. I needed to get into Johns Hopkins for serious neck surgery, and his efforts to get someone to take my case failed because he only had relationships with people in his little group.

2. By being heartless and unobservant. I was in so much pain at one point that I was afraid to sleep... when I did sleep, my muscles froze up so bad I could barely get myself out of bed in the morning. (Literally.) I had a pain specialist tell me that it was her "philosophy" that pain patients need to keep working. She refused to fill out short-term disability paperwork for me, even though I could barely eat, sleep, walk, or dress. Heartless witch!

3. By not seeing the whole picture. I had been seeing a rheumatologist for Sjogren's Syndrome, an autoimmune disorder. Then I was diagnosed with Marfan Syndrome, which can cause joint-related problems. Rheumatologists treat joint-related problems, so I went to my rheumatologist and explained that I wanted her to keep an eye on my Marfan Syndrome, too. She did not get it and insisted that she could not treat both.

4. By having surly office staff. At one point I was in so much pain that I could barely speak, so my husband was going to doctor's appointments with me and explaining things for the doc. At one office, a surly desk clerk refused to let my husband come into the exam room with me. She basically said, "He has to wait out here or the doctor won't see you." Jerk!

5. By running way behind schedule, every single day. I saw an infectious diseases specialist a few times, and every time, he was running a full hour or more behind schedule. Once in a while, I can understand how a doctor's schedule would get backed up. But if it happens every single day, something is just not right.

6. By being a one-trick pony. I saw a "pain specialist" who simply did spinal injections for nerve pain. It was all she was good at, so once I had the injections, it was time to move on.

7. By not explaining things well. I saw a neurosurgeon who literally told me that neck pain like mine generally cleared up with two weeks' bed rest and some pain pills. Later on, I requested a copy of my file from him, and to my surprise, it mentioned possible surgery. What? Why didn't he tell me that?!?

8. By not being attentive enough. I had a physical therapist who would work on me (hands-on bodywork) for about 10 minutes out of an hour-long appointment. And during those 10 minutes, he was also talking on the phone, monitoring other patients, and supervising other staff. I started to feel like I wasn't getting enough real care, so I did a quick phone survey of other PT offices in my area. All of them offered a minimum of 30 minutes of one-on-one time with the physical therapist during each one-hour appointment. I decided I really wanted to get that individualized attention, and left Mr. Distraction behind.

9. By not being available enough for appointments. This can be a heart breaker, when you think you have a great doc, but can't get appointments in a timely manner. My newest primary care physician has a two-week waiting list for appointments! What am I supposed to do if I have an infection that needs immediate care? Also, I was referred recently to a dermatologist with a six-month wait list for appointments. My rash will be long gone by then! And I used to see a rheumatologist who had office hours only on Tuesday afternoons. What on earth?!?! How useful is a doctor if you can't get in to see them when you have a problem?

10. By mis-billing me, repeatedly. I had a dentist triple-bill me for a single cleaning. And then their billing person took numerous tries at correcting the problem... without much success. I can't afford those kinds of problems!

11. By not staying up to date on medical advances. 'Nuff said.

12. By openly holding a political position that could undermine the quality of my care. I saw a hematologist/primary care doc who I later learned is openly pro-life and will not discuss birth control, the day after pill, etc. with patients. That just rubs me the wrong way... what if I need those things? I was going to use her as my primary care doc, but forget it.

There are more, I'm sure. Place a comment to add yours to the list!

Of course, changing docs is a major decision, and your ability to move from doc to doc is often restricted by insurance options (the doc you want may not be "in network" for your plan). Also, finding a really, really good doctor is very, very hard. I will write more about that later on!

Requesting Stuff from Your Doctor by Phone (Referrals, Prescriptions, Tests, etc.)

The Professional Patient received a good question recently. "I called to ask my doctor to write me an order for a test I need to have done by a particular date. He/she has not responded. Doesn't he/she know this is time-sensitive? If I don't get it soon, I'm going to miss the window of opportunity!"

The answer is, quite simply, NO. No, the doctor doesn’t know you’re running out of time for the test. Doctors take many, many requests by phone each and every day. Your call is not their only concern. It's hard to swallow, but it's reality.

Every time you call your doctor's office to request something, your request is triaged. Is it urgent or not? A "now" issue, a "today" issue, or a "later" issue? There are many things you can do wrong that will get your request dumped into the “later” category (being rude, leaving incomplete information, etc.). But there are many things you can do right that will ensure that your doctor and his/her staff respond to your phone requests correctly and in an appropriate amount of time.

The general principles of working with your doctor over the phone are the same ones you might find in your workplace’s guide to using voice mail effectively:

1. Be calm and polite.


2. Be specific about what action you need the other person to take, and how quickly they need to take it.


3. Provide supporting details.


4. Explain how they can contact you.


5. Follow through.

Let's use three common phone requests as examples to illustrate the best way to work with your doctor over the phone. These are written in one giant block, as if you were leaving a voice mail. If you are lucky, you might speak with a real person, so be sure to let them talk, too!

Example 1: You need a prescription or prescription refill.

Hello, how are you doing today? I am calling to request a prescription refill. The patient’s name is John Q. Public. The medication is Allegra 180 mg, given once per day. I need a prescription written for a one-month supply. I would like the refill order faxed to Super Pharmacy at 123-456-7890 before this Friday at 5 pm because John will be out of pills at that time. Will that be possible? My name is Jane Q. Public, and you can reach me at 123-456-7891 if you have questions or need additional information. Thank you very much for your assistance.

Polite: How are you? Thank you very much.
Required action: Fax prescription order to pharmacy
Required timeline: Before Friday at 5 pm.
Reason for timeline: Will run out of pills
Supporting details: Pharmacy name and fax, patient name, drug name (Allegra), strength (180 mg), and dosage (1 per day).

Homework for YOU: Call pharmacy Friday by 5 to see if prescription order came in. If not, call doctor again.

Request 2: You need a test ordered (x-ray, blood test, etc.).

Hello, how are you doing today? I am calling to request a written order for an x-ray. The patient’s name is John Q. Public. The x-ray required is a chest x-ray, and the reason for the x-ray is pneumonia. The doctor wants the x-ray before John sees him next Wednesday, so I was hoping to get the written order by next Monday. Will that be possible? If so, I will pick it up in person. My name is Jane Q. Public, and you can reach me at 123-456-7891 if you have questions or need additional information. Thank you very much for your assistance.

Polite: How are you? Thank you very much.
Required action: Write order for chest x-ray
Required timeline: By next Monday
Reason for timeline: Appointment is next Wednesday
Supporting details: Reason for x-ray (pneumonia)

Homework for YOU: Next Monday, go to doctor’s office and pick up x-ray order.

Request 3: You need a referral.

Hello, how are you doing today? I am calling to request a referral to a specialist. The patient’s name is John Q. Public. The reason for the referral is Sjogren’s Syndrome. The specialist is Dr. Jane Doe at 123 Main St., Suite 1, Anywhere, MD 21227. The specialist’s phone number is 123-456-7811 and fax is 123-456-7822. The appointment date is July 30. Please fax the completed referral to Dr. Doe no later than July 29 at close of business. Will that be possible? My name is Jane Q. Public, and you can reach me at 123-456-7891 if you have questions or need additional information. Thank you very much for your assistance.

Polite: How are you? Thank you very much.
Required action: Write referral to specialist and fax it to them
Required timeline: By July 29
Reason for timeline: Appointment is July 30
Supporting details: Reason for referral, doctor’s address/phone/fax

Homework for YOU: On July 29, call the specialist’s office. Do they have the referral? If not, call your doctor and follow up.

If your doctor drops the ball on one of your requests (the referral didn’t get to the specialist, the refill isn’t ready at the pharmacy, etc.), call your doctor and find out what happened. Continue to be polite, helpful, and specific. Explain that you had called on date x about something and it has not happened. Then re-state what you need, how quickly, etc.

Some doctor’s offices respond to phone requests immediately, while others take a couple of days to respond (usually 1-2 days). If your doctor’s office is repeatedly late in calling you back or unable to complete your requests correctly and/or on time, you may want to consider finding a new doctor.

Related posts:
Managing Referrals and the Billing Process to Prevent Unwanted Surprises

Getting A Last-Minute Doctor's Appointment

You need to see your doctor -- NOW! How do you get in to see your doctor on the same day you call, or even the same hour?

Step 1: Call at the right time. First thing in the morning is  good,  if you want to get in on the same day. But realize that every doctor's office takes a flood of calls first thing in the morning. Expect to be put on hold. If you can't bear waiting in line, call at midmorning instead.

Step 2: Ask for help. "Hello, I am hoping you can help me." "Hi, I need some help." "Good morning, can you help me, please?"  This lets the receptionist or appointment scheduler know you are in a vulnerable spot.

Step 3: Give a good reason why you need an appointment right away. Be specific about what is dangerous, disabling, or getting significantly worse. Explain any previous appointments you had for the same thing.

Examples:
"I saw Dr. X two days ago, and have been having bizarre reactions to the medication he gave me at that appointment. My legs are going numb."

"My peak flow is down in the red zone for no apparent reason. I am having trouble breathing when I do anything."

You'll know what you need to say.

Keep in mind that even if you follow these tips, sometimes you just won't be able to see the doc on the same day. In these rare cases, consider visiting an urgent care clinic instead.

Good luck!

This article is very loosely based on techniques in The Good Girl's Guide to Negotiating, by Leslie Whitaker and Elizabeth Austin. 

Good related reading: Straight From the Doc's "Secrets to a smooth doctor's visit".

Cyberchondriac , or informed patient?

Today, WSJ.com discussed Cyberchondriacs,  over-informed web surfers who obsess over far-fetched diagnoses. I think the authors concept of misinformed patients is way off the mark. File this under things that make me mad!

The author is a doctor who expresses frustration at one patients request for Enbrel, a medication for psoriasis. Apparently, Enbrel is prescribed for psoriatic arthritis. Excuse the poor patient for being misinformed enough to think that psoriasis and psoriatic might be related terms.

The author also expresses frustration at a patient who has red, uncomfortable eyes. This patient worries that he may have a herpes infection, which can affect vision. Excuse the poor patient for being misinformed enough to think he had herpes. The Medline Plus Medical Encyclopedia's entry on herpes simplex says herpes can cause complications such as an eye infection. And the patient was having eye problems. Seems logical to me.

The author, as a doctor, should have cause for frustration and concern only when human logic fails to connect the dots. Herpes, for example, can lead to pneumonia. It does not, however, cause diabetes. If I were to walk in to the doctors office and demand a herpes medication to cure my diabetes, then the doctor can be frustrated.

I think the rise of informed patients is a positive thing. Understanding your medical condition can be key to coping with it. And being involved with your doctor in discussions about your medical care is also key to understanding and following your doctor's treatment regimen.

I agree with the author that there is lots of bogus medical information out there that is leading patients astray. My advice for the educated patient: use reputable research sources, then listen to your doctor's recommendations. Research + your doctor's recommendations is the best combination.