Medical Notes: When Doctors Get Them Wrong

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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?

Post Flare Recap: How I Got Through My Last Flare

I think that I can safely declare that my recent flare officially ended a couple weeks ago. Before announcing it on my blog, I wanted to make sure that this was actually the case and not just my immune system playing one of its sneaky tricks on me.  At least for me, half the battle is really just getting through these very difficult autoimmune disease blow-ups.  I thought I might mention a few of the things that helped me during this rough patch.  It could prove helpful to have this short list available for the next time, but I have my fingers double crossed that it will not be for some time.

When the flare started, it was a jolt to my system both physically and mentally.  How could I go from being in a pretty stable place to being stuck back at home, unable to read, exhausted and in pain? I had to remember how to get through sick days like these. I had done it before and needed to rely on my previous coping strategies.

This required me to re-adjust my routine.  No I couldn't write a blog post with such eye pain, but there were other things that I could do to keep my mind somewhat active while resting. Instead of reading and writing, I caught up on my favorite podcasts or listened to a book as opposed to reading one.  This helped me stay distracted some of the time. Whether listening to books,  TV shows, or podcasts, I tried to stick to those that had some humor and comedy.  When I feel rotten, smiling and laughing do not come easily.  But when I do laugh, it can give me a momentary reprieve from the pain and discomfort.  I can't tell you how many dumb jokes my husband tried on me during those weeks just to see a slight smile.

It's was also essential for me to keep making my daily to-do lists. Getting dressed deserves a check on the list (yes, even that is a chore when I'm having a flare) and so does napping.  Those of us who get them know getting plenty of rest can be crucial for getting over a flare, but it still takes a lot of reminding for me to let myself sleep during the day. These lists can be more helpful for me during a flare than when my health is better.  My flares are usually accompanied by some serious brain fog and it is more likely that i I forget to take my medicine if I don't write it down. Everything I get done during a flare takes extra effort so having a list helps me to recognize what I can and did accomplish at the end of the day.   While it might sound a little silly, a check off on my to do list is my equivalent of giving myself a gold star.  Maybe I should even design a gold star system for the next flare.

I tried to be diligent about writing in my gratitude journal (read more about gratitude journals here). Simply jotting down the good things in my life reminded me what is positive even when I am feeling crummy.  It's not the easiest thing to do when you are ill, but every bit of positive energy that I can cultivate goes along way.

While I couldn't meet my friends out for fun activities, I still tried to so some easy socializing. I invited one or two close and compassionate friends to come by for brief visits. I let them know that I might need to cancel in advance so there was no pressure if I felt too sick.  Their company buoyed my spirits, got me laughing, and helped me feel more connected to the outside world.

So that's the end of my flare talking for now! I am beyond thankful that this past flare ended, but I'll have these reminders for the next ugly one.  What were your strategies for coping with your last flare?  What types of things seem to help you the most? I hope I won't be re-reading the post for a while!

Autoimmune Adventures: My Multi-Colored Feet

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My feet are not the usual topic of my blog posts, but they have been doing something new and interesting lately.  Usually they stick to just being blue and cold from Raynaud's especially during the winter months.  Raynaud's syndrome often occurs secondary to other autoimmune diseases.  Fortunately, it is not something that creates real disruption in my life and I able to manage it without too much effort relative to my other autoimmune issues.

But it seems my feet decided that they needed some more attention from me and my doctors.  Recently, some of my toe joints on both feet have started to swell.  Along with the swelling they turn red and hot and can be painful to the touch.   Now my feet are a combination of red, white, and blue -- maybe it's their attempt to be patriotic. Just my luck, I had my rheumatology appointment two days before this symptom started. Again, my body being characteristically uncooperative.

I know joint swelling can occur with Sjogren's and other autoimmune connective tissue diseases. However, I have been told that with Sjogren's the swelling is in many cases on one side or unilateral and affects the larger joints.  My swelling is on my both feet and on the smaller toe joints.  I did have a regular follow-up with one of my other physicians this week and he is pretty positive this is a new part of my soup of autoimmune symptoms.  I have taken pictures of my colorful feet to email to my rheumatologist for his opinion. Though it does feel a little strange to be emailing pictures of my feet. This is another medical puzzle provided by yours truly for my rheumatologist to figure out.  I guess you could say I always like to keep my docs on their toes (pun intended).

We Need More Research for Sjogren's Syndrome

Sjogren's Awareness Bracelet

I had a hunch for some time that there weren't enough studies on Sjogren's Syndrome (SS).  In reading articles about recent autoimmune disease research, it seemed there were more studies on other diseases.  Well, it turns out that my hunch might not have just been a hunch.  In a review published last month in Expert Opinion in Pharmocotherapy evaluating treatments for Sjogren's, the authors found that there are have been few large studies on how to effectively treat primary SS.  Click here for the abstract. 

Given the high prevalence of Sjogren's among autoimmune diseases this should not be the case. 

Most larger random controlled trials (RCT -- which are the gold standard in scientific research) have focused on evaluating how a treatment effects symptoms of dryness for SS patients. As I have written about before, Sjogren's is more than a dry mouth and dry disease and patients can also experience other debilitating symptoms such as fatigue, muscle and joint pain, neurologic, and organ involvement.  It's far from a fun combination of symptoms and more research clearly needs to be done on how to improve these serious complications of SS.

A few points this article really hit home and made me realize that Sjogren's patients should expect more from the scientific community and must continue to push for more comprehensive research whenever possible.

• A good deal of the treatments used to for symptoms of SS is based on research from other autoimmune diseases such as SLE and RA.  This is even true of the use of corticosteroids and methotrexate.

• Studies involving Sjogren's patients often involve a small number of patients and in larger studies the focus tends to be on symptoms of dryness or glandular aspects of the disease.  

• Biologic therapies targeting B cells seem to the most promising area of treatment including the use of rituximab and epratuxumab.  Surprisingly, there have been more studies on rituximab and greater evidence for its use in Sjogren's patients than there have been for immunosupressive treatments such as methotrexate.  However, rituximab is still considered an off-label treatment for Sjogren's.  I'm not a doctor or scientist, but this doesn't seem to make much sense.

• The good news is that authors see the treatment of Sjogren's improving as biologic therapies become more specific. Two trials are in thew works using Belimumab (Benlyista), which targets the activation and stimulation or over-stimulation of B cells.  It has already been approved in the treatment of lupus.

I agree with the authors that we need more and larger trials specifically designed for Sjogren's patients, and especially trials focusing on the systemic aspects of the disease.  Sjogren's patients should not just be treated based on outcomes from trials and research for other autoimmune diseases.  That would seem obvious, but it's not the case today. 

A Modest Proposal

Here's an idea. It might seem simple, but to me it would be a big improvement if there was a way for doctors to share and compare the way they treat their patients. This would be a Sjogren's Syndrome Treatment Registry, similar to the Sjogren's International Collaborative Alliance funded by the NIH. Specifically, this would mean there would be a database kept by each hospital about each patient treated with SS, including symptoms, treatments, and results. It would be anonymized, of course.  

From my discussions with physicians, this registry would be quite helpful to them. Most say they are working with little actual data, and are largely confined to the clinical patients and results they see. (This is a larger problem in medicine I realize, but for specialized diseases I believe it is even more acute.) This data could also help provide insight into what trials should be funded.  Furthermore, a registry could help doctors and scientists systematically match specific disease complications to which treatments are successful or unsuccessful.  As many of us with autoimmune disease know, what works for one patient does not always work for another and rheumatologists often try a number of treatments before finding one that works.  

So, all this said, why is Sjogren's ignored to date?  I don't know, my husband claims we have bad branding. Could it be the name? It is hard to say and spell and that makes it hard to raise awareness in some ways he claims.  Maybe there's something to it. I don't know, but there doesn't seem to enough action in the area at the moment. 

Of course, more studies and funding are not only needed for Sjogren's but also for autoimmune diseases generally.  And it is the perfect time for all of us to put on our lobbying and activist hats because March is Autoimmune Disease Awareness Month. There is lots of work to be done. Our collective voice can make a difference.

How do you think we can improve research and treatment for SS and other autoimmune diseases?

An Almost Everything Free Recipe: Chickpea and Arugula Salad

As many of you know along with being an Autoimmune Gal, I am an Allergy Gal as well.  I have had to drastically change my eating habits over the last five years when I was diagnosed with adult on-set food allergies. The number of foods that I am allergic to has increased steadily so just as I think that I have mastered how to eat, it seems a new food allergy diagnosis comes my way

I have started to cook all of my own meals from whole foods and wanted to share some simple recipes. I published the basics since for someone like me minimizing ingredients helps reduce the likelihood of an allergic reaction. For those less constrained you might want to spice them up a bit.  My recipes are corn, tomato, tropical fruit and onion family free.  And I almost forgot to add gluten free, which is a sensitivity not a true food allergy.

This chickpea and arugula salad recipe came about because I had been looking for additional sources of healthy protein to add to my diet. I came across chickpeas (also called garbonzo beans), which are high in fiber, folate, and zinc and taste mighty good.  I found some zesty fresh arugula at the local farmer's market and thought voila -- why not make an arugula and chickpea salad

Arugula and Chickpea Salad

Ingredients

1 1/2 cups dried chickpeas (canned chickpeas can be substituted)
3 1/2 cups arugula
2 tablespoons olive oil
salt (to taste)
pepper (to taste)

Directions

Rinse dried chickpeas in cold water. Cover generously with cold water and soak overnight or for at least 6 to 8 hours. Rinse soaked chickpeas again.

Simmer chickpeas in approximately 6 cups of water for between 45 minutes to 1 1/4 hours.  Stir occasionally and cook until tender. Chickpeas should no longer be white in the center

Let chickpeas cool. Add olive oil, salt, and pepper to taste.

Wash and thoroughly dry arugula (a salad spinner works perfectly).   Place chickpeas on top of arugula as shown or toss the two ingredients together if preferred.  Add other seasonings or dressing as desired.

If your food allergies allow, some ingredients that might be fun to include are tomatoes, basil, fresh lemon juice, or feta cheese.  There are so many possibilities.  I would love to hear your variation on this healthy recipe.

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