Medical Notes: When Doctors Get Them Wrong

Image Source

I spend too much time in doctors offices.  This is one of the many drawbacks of having an autoimmune disease and needing careful monitoring.  Doctors visits also mean keeping track of my medical records. This is no small task as many of you know who have serious health challenges.

Given my medical adventures over the last 5 years, not many problems and inefficiencies in healthcare surprise me.  One thing always does -- how often my physicians' notes contain mistakes regarding my past and current medical history.  Granted my history is far from simple -- it is complicated and certainly not standard for an average woman in her 30s.  But mistakes and inaccuracies in health records are serious business and can be dangerous (and even deadly) for patients.

I have found that once a mistake is made in my health record, it is often repeated by the next physician who reads them.  This has even occurred when I point out the various inaccuracies and mistakes with the goal of having them fixed.  In some instances, I have been treated as if I am confused about my own medical history.  It seems that once something is written by a physician even incorrectly, it becomes written in stone to other physicians.  It can become a Herculean task for a patient to have it fixed.

My way of dealing with this problem is far from ideal and quite time consuming.  I request that my physicians send their notes to me.  Now this is no easy feat.  Doctors offices and hospitals are often quick to send records to other physicians, but make it a long and difficult process for a patient to actually get their own records.  This occurs despite HIPPA regulations to the contrary.  

Once I actually receive my records, I then review them and ask the doctor to fix any significant errors in my medical history.  (This can certainly be an uncomfortable request to make and a couple of doctors have made it clear they were not happy with me for asking). It is only then that I send my medical notes to my other physicians.   This is not a strategy that I recommend to others especially during health crises because it can delay coordination of care.   

Some might think that I am overly vigilant about my medical records, but this goes beyond my type A personality.  Inaccuracies in my chart helped contribute to the long delay in my autoimmune diagnosis.  

Most patients would agree that they should have easy access to their medical records and should not have to jump through hoops to get them. One question I hear discussed--will the increasing adoption of electronic health records (EHR) improve the accuracy of patient records? It's a big question probably fitting for additional blog posts.  I have heard both sides of the argument and I'm really not sure. Will it make mistakes harder to enter my records? Or will it propagate these errors so I can't get rid of them? My current opinion is that it will depend on whether or not doctors and hospitals allow patients to contribute to their personal EHR and if they can access records and request corrections.  

What has been your experience accessing your medical records? How do you address inaccuracies when you find them?

The Power of Pictures: Doctors Visits for Autoimmune Patients

Image Source

I recently had an appointment with my primary care physician (PCP) and it got me thinking about one of the strategies that I have developed over the last year to make my doctors visits and medical care in general more effective. It's pretty simple in the age of the smartphone: taking pictures.

While it might sound trivial or even silly, let me explain.  With autoimmune disease, like with many chronic illnesses, symptoms can fluctuate with little notice and new symptoms may unexpectedly emerge.  Often times these are symptoms which manifest themselves in ways that can easily be seen, but may only be visible for limited amounts of time. Rarely am I lucky enough to have an already scheduled appointment with my rheumatologist or PCP when one of these occurrences happens.

I was frustrated on several occasions when trying to describe a symptom to a doctor that they clearly did not understand. In some cases I just don't think they believed me; in others, it was a condition which would be hard to describe.

I now have a plan. When something new happens that has a visible manifestation--whether it be a swollen joint, a new rash, an eye that doesn't move correctly, or a puffy face--I take a picture. If the medical issue is pressing, I can then email my physician the picture (if they allow email communication) or I can simply have it available on my phone for my next appointment.

I've had doctors tell me seeing a picture isn't necessary but then I show it to them...and, sure enough, it always makes a difference. I guess it's human nature: "seeing is believing".

I have found this has made a major difference on several occasions in terms of how a doctor evaluated my symptoms.  It is hard for a doctor to deny a medical problem or attribute it to a patient's imagination, when a picture is right in front of them.

Pictures have been critical for my allergist to confirm that I again have a condition called angioedema.  While it was suspected, my face or lips were never in the process of  fully swelling while I was in the office.  Upon showing pictures of my face blown up like a balloon led my allergist to say  "it is definitively angioedema" and my PCP to say "oh my God" in shock about how bad it can become.

Photos have also helped my doctors treating me for blepharitis, rosacea, and some additional neurological complications of autoimmune disease to name just a few.  Of course I am not suggesting my smartphone photos replace an in person medical exam, but they give my doctors additional information and evidence to work with.  It has meant in on more than one occasion that my doctors have taken my symptoms more seriously and treated me more quickly.  I guess my smartphone has become my means of medical documentation.

Now at first, I wasn't sure how my doctors would react.  Afterall, some could see my documentation as somehow showing a lack of faith in their diagnostic skills.  However, I have even found that many of my doctors have come to appreciate my active participation in helping them to diagnose and treat me.

It my sound cliche, but in dealing with the complications of my health and trying to work with my doctors a picture can really be worth a thousand words (and more).

"You Only Have Sjogren's"

"Only."  If it were "only" anything. What a dreaded word for many of us afflicted with this condition.  It's something I, and most others I know, have heard variations of before...from friends or colleagues.  But I don't expect to hear it from a doctor.

I was seeing a dermatologist for complications my doctors believe were related to my autoimmune disease. The resident came in first and asked about my rheumatological history.  When I said I had Sjogren's--which is only one part of my complicated history--his comment was, you guessed it, "You Only Have Sjogren's".   I could have strangled him with his stethoscope right there. Really? Only?  Like he had any idea what that meant.

At that moment, I decided that I needed to speak up instead of reaching for his neck.  If I had said yes, I would have been an accomplice in aiding and abetting ignorance. Playing into his ignorance that Sjogren's was not a serious, potentially multi-system, and disabling disease.  So, I opened my big mouth trying to strike a balance between being polite and firm and decided to start educating.  I informed him that "saying I only had Sjogren's is just not accurate" and I went on to outline some of the specifics of my illness and how it has affected my life. I included the fatigue, joint pain, eye pain, pulmonary problems, and, in my case, cranial neuropathies as well.  He seemed to think Sjogren's was just the dryness disease.  I almost laughed as I told him "I wish."  I am hoping that hearing my story of the years until diagnosis (some painful irony that this doctor was with the same hospital which had never figured out my diagnosis) and the range of symptoms I possessed would change how this doctor viewed the disease and would treat his future patients.

I have heard other doctors and lay people make this type of statement before. Though I always found it troubling in the past I would have often said nothing.  But I've decided educating everyone I can is a small thing I can do for others with Sjogren's.  If patients with Sjogren's like me are not going to educate others, the widespread lack of awareness will certainly stay the same.  People will continue just to associate Sjogren's with dry eyes and dry mouth--aliments that many consider a nuisance and can easily be managed (although we know even those symptoms are not so simple).  They will not understand how you can be disabled when you have Sjogren's and assume you can function just like anyone else.

I'll give the resident some credit. I think after recovering from being stunned after my lecture, he seemed to understand this was something he probably should think more about in the future.

This whole exchange got me thinking and doing some additional research. I wondered what the standard literature said. A little bit of google research took me to the American College of Rheumatology Sjogren's Patient Education Page.  Lo and behold, Sjogren's is made to sound like a very manageable disease where symptom relief mostly focuses around dry eyes and dry mouth.  A few eye drops and you should be all set. Complications beyond dry eye and dry mouth are made to seem like rare anomalies and it would appear those with Sjogren's have to make very few life changes.

To quote them:

BROADER HEALTH IMPACT OF SJÖGREN'S SYNDROME
A vast majority of patients with Sjögren's syndrome remain very healthy, without any serious complications. Patients should know that they face an increased risk for infections in and around the eyes and an increased risk for dental problems due to the long-term decrease in tears and saliva.

Rarely, patients may have complications related to inflammation in other body systems, including:

• Joint and muscle pain with fatigue
• Lung problems that may mimic pneumonia
• Abnormal liver and kidney function tests
• Skin rashes related to inflammation of small blood vessels
• Neurologic problems causing weakness and numbness

In a small number of people, Sjögren's syndrome may be associated with lymphoma, a cancer of the lymph glands.

Well, lucky me I've got four of them.  Most others I know who suffer from the condition have multiple symptoms and the list above is not even extensive (Check out this diagram from the Sjogren's Syndrome Foundation for a more comprehensive list of symptoms).  The broader medical community still seems very much behind the times with autoimmune diseases.  I'd say the burden for educating them and the broader public has to begin with us. If not us, who?

Calling My Doctor's Office: It Shouldn't Be This Hard

 Photo Source

I had an experience with my internist's office recently that just made my blood boil--and I know that many other patients have had similar interactions with their physician's offices.  My doctor had nothing to do with the interaction and it was a phone call with one of her office administrators that I am writing about.  It was a clear reminder why healthcare can be so unfriendly to patients and why for people with chronic illness constant interaction with the medical system is a stress on its own.

I called my doctor's office to deal with a timely and serious medication issue and to send recent abnormal test results.  I was doing what I was supposed to do--responsibly addressing and coordinating my own medical care between doctors' offices.  The story in brief is that the administrator on the phone repeatedly scolded me for calling the phone number that I did.  She kept repeating, "do not ever call on this number it is for emergencies and for physicians."  I explained that this is the phone number that my internist has specifically given me to call.  (Not to mention that my internist has also given me her cell phone number and direct email and there is good reason for this. She has told me I am one of her most complicated and sickest patients.)

Despite my best efforts to relay the instructions my doctor had given me, it was no use--the scolding just continued.  When I was finally able to relay the reason for my call, which was nearly impossible because the administrator was trying to get me off the phone as quickly as she could, she again repeated that I was never to call this number again. I felt as if I was being treated like a child who is told she had misbehaved.  Not surprisingly, the administrator did not help me with either of the two issues I was calling about.

The reason I see this internist is because she takes my health problems seriously, is responsive and compassionate, and encourages me to be in touch.  But this administrator clearly finds my interaction and communication with the physician bothersome.  I wish that I was not sick and did not require ongoing medical care.

The last thing most people want to do is be involved with a physician's office.  The people who work there should serve as a kind and a effective conduit between patient and doctor, making what is often an unpleasant experience better.  While this is not always the case, I have found that some administrators in physicians' offices seem to relish serving as a barrier between patients and doctors. They are officious as opposed to helping patients. 

I am sure this administrator's work is not always pleasant since it requires dealing with anxious and upset patients at times. But that is the nature of the job.  A helpful and friendly staff member behind the front desk or on the phone at a physician's office can make a huge difference for patients and their families.

As a patient, our best recourse is to file a complaint when we are treated poorly and if the situation is bad enough to leave the doctor's practice.  The next time I see my internist, I will tell her about my interaction with this staff member.  Doctors are in charge of their offices and it is their responsibility to make sure those who work for them do their job well.  In my opinion, there is a real problem in the culture of healthcare when patients, the consumers of healthcare and those who are sick, are treated as the enemy.  

Food: Why Hath Though Forsaken Me?

Was it really less than three days ago that I wrote about my experience with food sensitivity testing (see here) ordered by my ENT physician and my plan to try some new diet modifications based on the results?  It seems that my body or more aptly my immune system has a different plan in mind and food sensitivities will have to take a back burner for the present time to deal with some unexpected and severe food allergy problems.

I already have serious diagnosed Type I food allergies, the most challenging being to onions and the whole onion family, but the list also includes tomatoes and most tropical fruits.  (The onion family ends up being used in everything making it hard to trace.) Over the last 2 plus years I thought that I had gotten these food allergies under control gosh, darn it!  Cooking my own food, paying careful attention to ingredients, and only eating at a handful of restaurants where the chef and wait staff are willing to take the extra steps so there was no cross contamination in my food.

Photo Source

About a month ago, my husband and I went out to eat with another couple (an activity that has become a new treat since my autoimmune disease symptoms have improved over the last few months) and, lo and behold, my cheeks and lips started swelling. My cheeks felt tight and stretched out and I definitely started to look like a chipmunk.  This from a plain piece of grilled fish. Of course, it had to be a work dinner for my husband when this happened--need I mention the first work related dinner I had been able to attend with him in 3 years. Since I was eating plain fish I assumed there must have been some cross-contamination with onion or one of the other foods in the onion family.  I took benedryl and had my epi-pen in my purse at the ready, but, thankfully, the benedryl worked. I thought that was the end of that.

Unfortunately, it has since become clear that I was entering a whole new chapter of my allergy challenges. Welcoming back my throat-swelling has not exactly been like finding a long lost friend. I am most likely now allergic to something new, making the last several days a roller coaster.  I have again had swelling on multiple occasions, even when preparing meals at home or eating foods that are part of my usual diet. Clearly new foods are wreaking havoc but I am having a hard time figuring out what could be the cause. When my usual breakfast this morning led to another one of these swelling episodes, I knew that I needed to go to the allergist office to start to try to figure out what might be the new allergenic culprit(s).

While we are trying testing to isolate the new problem, we have yet to reach any clear conclusions on the cause of my new allergies. (I'll spare the details but because I'm on steroids, testing and getting clear results is more complex than normal.) In the meantime, since I am now so reactive and we don't know why I have been put back on an elimination diet.  I have had to do this in the past and it is no fun. You slowly add each new food one by one back into your diet, record what you eat daily, and note every allergic reaction. This approach means not eating foods with multiple ingredients, like cookies or breads from the grocery store, because if you do have an allergic reaction it is then impossible to parse out which ingredient is the cause. As I said, no fun.

Being so allergically activated is challenging (and dangerous) in its own right, but making matters worse is that treatment options are limited by my autoimmune disease...while at the same time the reactions themselves put me more at risk for an autoimmune flare. Because I have Sjogren's syndrome, anti-histamines make my dry eyes and dry mouth much worse and also increase my ear pain (related to my eustachian tube dysfunction).  This is the delicate balance that my allergist and I are trying to piece through together. I wish it felt more like science than trial and error.

While my autoimmune disease is what has materially changed the quality of my daily life, I know first-hand that allergies can be life threatening.  Where does that leave me?  At the moment, trying to get my recovery back on track.  Just when my autoimmune symptoms were under control enough that I could begin to socialize and start participating in the world again, my allergy symptoms decided not to cooperate.  I don't have an easy solution. I would like to find a creative way to distract my immune system from attacking the wrong things.  Could I teach it to meditate? Yoga perhaps? Or maybe long distance running.  Anything to distract it from attacking me...and the food I love.

When They Said I had IBS

Image Source

A friend was talking about In N-Out Burger and over the weekend, and it reminded me of one of my past experiences with doctors of a different sort than I usually write about.

My husband and I were in Los Angeles eight years ago, before I had any obvious manifestations of autoimmune disease. (I was actually considering a move to LA for graduate school and was torn about what to do but that is a whole other story!)  Our friends in LA and my now hubby raved about the hamburgers at In N-Out and insisted that I had to try one.  Not being much of a fast food gal, I still went for the bait. Initially I enjoyed the meal, but I quickly came to regret my decision--just my luck I had gotten myself a very bad case of food poisoning.  Simple food poisoning usually passes fairly quickly, but this was different. The food had thrown my stomach into complete turmoil and the symptoms lasted weeks after my return home.  Every time I ate, my stomach revolted.

Eventually I went to my internist at the time; he then referred me to a gastrointestinal specialist. They ran tests and cultures to make sure that I hadn't picked up a bacteria or a parasite.  When they came back negative, the GI specialist insisted on a colonoscopy.  It didn't show anything in particular and the doctor then concluded that I had Irritable Bowel Syndrome (IBS).  I know that IBS can be a serious diagnosis and I have several friends who struggle with it.  But, what did this diagnosis mean for me?  It meant I had stomach problems... and since the doctor couldn't find anything with the tests, he threw a catch-all diagnosis on it so he could stop dealing with me.  His therapeutic suggestion?  That I should do yoga to relax--intimating that my stomach upset came from stress.  I was confused.  I had never had stomach problems before this food poisoning.  How did one thing lead to the other?  He didn't know, but the problem was he didn't seem to care.  A switch had been flipped.  Once he decided I had IBS, he immediately decided to go to his "playbook" for IBS: reducing stress was a good cure for him.  It is not that I’m opposed to yoga by itself as a treatment, but rather it was clear that it in my case the suggestion was a convenient way of categorizing and dismissing my symptoms...and getting rid of me.  As I've learned since, there area various treatments and steps one can take to help rebuild the gut, but those weren't discussed. 

Looking back, I still wonder if this physician would have treated a male patient the same way and told him to do yoga and relax. I have a hard time seeing a doctor tell my husband to do that in the same situation.

I guess it shouldn't have surprised me a couple years later when I started to have symptoms of autoimmune disease and doctors kept telling me that if they couldn't see anything wrong in the test results then I couldn't be that sick. At the time I didn’t realize that the process I had endured with my stomach would repeat many more times in the coming years once my autoimmune disease kicked off:

Step 1: Go to doctor for problem.

Step 2: Doctor conducts set of tests they "do" for a particular condition.

Step 3: Test come back inconclusive, slap a diagnosis (or not) on me, and tell the me try to relax or take pain killers.

The concept that further thought and clinical analysis was needed, that what I said was accurate, or that they should try to figure out a potential cause for my symptoms did not seem to enter the equation for most of the doctors I saw.  Or, another one my favorites, that they didn't know what was wrong with me, but I was young and would eventually get better and I just had to wait it out.

Thankfully, my stomach did clear up on its own with careful diet and the tincture of time.  It took almost a year for it to really return to normal.  Maybe this was an early clue as to how sensitive my body is to any assaults or disruptions.  And of course, I will never eat an In N-Out burger again, but the picture of the one above does look particularly good.

Ear Progress: My Story of Sjogren's and Ear Pain Continued

I think writing the most recent blog post about the possible ear manifestations of Sjogren’s might have been a good omen.  As I had mentioned, I had been unable to find an ENT physician with interest in really investigating my symptoms and knowledge of autoimmune disease.  The usual story would be that I would go to the ENT, he would look briefly in my ears and tell me everything looked fine. They would say that my ear symptoms where all related to the cranial neuropathies I have due to Sjogren’s and refer me back to my rheumatologist and neurologist.

For the last two years during these appointments, I have tried to explain that it at least felt like there were two different problems going on and two different sets of symptoms; the neurological aspects of autoimmune disease and something else that was causing what felt like an ear infection and ear pressure.  But doctors, as I have so often experienced, do not always spend the time to figure out if what the patient is saying is actually accurate nor to really investigate what might be causing a patient’s symptoms.   To make it more complicated--and more frustrating--my allergist and my internist on several occasions would look in my ears, find them red and inflamed, diagnose me with an ear infection, and put me on a course of antibiotics. This might help for a few weeks, but then the symptoms would return.

Photo Source

The pattern repeated itself last week but my internist did not want to put me back on antibiotics without getting a second look from an ENT. While I was skeptical that this would be nothing but another fruitless trip to yet another new ENT’s office, I agreed to give it one more try.  I went to the new ENT’s office and was first seen by the resident who looked in my ears with an otoscope and said everything looked fine. Another wasted trip to the doctor I thought, at least I am no longer surprised by them. 

Then I met the ENT doctor. He was pleasant and very interested in my medical history.  When he looked in my ears with the otoscope, he said “I think I know what is going on here.” He then used a nasal endoscopy to look at my sinuses, throat, and ears and see if his hunch was right. At this point, I did not know what his hunch was, but I was glad to hear he had one. The doctor explained that I had eustachian tube dysfunction, which is suspected to be one of the primary causes of ear pain and pressure in Sjogren’s patients, as I wrote about here.  He also diagnosed me with chronic sinusitis.  Because the conditions are chronic and not acute, antibiotics would not provide a long term solution.  And so the doctor came up with the following plan to get started and see if he could treat these two related issues.  

1) He gave me a prescription for two new nose sprays: a steroid and an antihistamine.  I was already using a steroid nose spray, but he felt this one would be more effective.

2)  I would need a CT scan of my sinuses to get a better look at them.  (I was not crazy about needing another scan, but it turns out they had never looked at my sinuses and given my ear problems and pain level I’ll do it.)

3) Additional blood tests for allergies to see if the chronic sinusitis might be partially allergy mediated.

One of the most notable differences between this appointment and others I have had was the interaction and mutual dialogue between physician and patient.  My new ENT appreciated that I was a knowledgeable, well informed patient and said he learned a lot from my complex medical history.  While I don’t want to be too optimistic, I am really hoping this will be the beginning of some progress on the treatment of my now officially diagnosed eustachian tube dysfunction and chronic sinusitis.