Monthly Archives: August 2009

What’s In Your Medical Records?

Do you know what’s in your medical records? Knowing what is in your records can play a big part in not only your future treatment but can also give you the information you need to ask the right questions of your doctor, which believe it or not, can lead to critical testing and proper treatment for many conditions. Every patient has a right to know what is in their medical records and dispute it if necessary.

In the past few months I have heard from many patients who have horror stories to tell about getting copies of their medical records and being shocked to read what their doctors put in their files. Remember, your medical records are much like your credit history and follow you from now until who knows when. All future physicians will seek copies of your current medical records, so you should guard them and ensure accuracy with vigilance.

Perhaps it is the nature of the lupus and its difficulty in diagnosing that leads to the erroneous information that is being placed in files. Or perhaps it is put there by physicians who are not specialists in the diagnosis and treatment of lupus who put incorrect information in a patients file. It doesn’t really matter why, it only matters that it is there and it can harm you and your future treatment for not only lupus, but for many other illnesses.

One particular patient was beyond shock when she read in her medical records that she had been diagnosed with a psychiatric disorder. This was only discovered when she finally read her records and the physician notes. It was the notes that disclosed this fact. She took immediate action to correct this unsubstantiated diagnosis. She had a letter written by her current rheumatologist and had it sent to be included in the records of the physician who put the “psychiatric” note in her file.

Another patient, who had not yet been given a definitive diagnosis, requested a copy of her medical records because her long time physician was closing his practice. It was only then that she found notes stating that her rheumatologist wrote a letter to her internist stating things that were totally wrong and that he had run tests that had never been done. This particular patient had been treated by the rheumatologist for over 10 years, yet the rheumatologist stated in his letter that the patient had only spoke of certain symptoms in the past 2 years. None of these errors would have been noted or corrected if the patient had not reviewed her medical records.

The last patient I will speak about was gathering and reviewing her records before she was sent to a tertiary treatment center. Among the records were 3 EKG’s all from the same date. On the top of the EKG’s it was noted that the patient had had a previous infarct, which means a previous heart attack. The patient was not aware of this so took copies of the EKG’s to her physician and asked for an explanation. Her current physician did another EKG to verify the results, which were once again abnormal. Further tests were ordered. The results were conclusive that the patient has limited blood flow to her heart and was scheduled for additional testing and treatment. In this particular case it is unknown if the abnormal EKG results would have been acted upon without the urging of the patient. In essence, this patient may have saved her own life. Limited blood flow to the heart will eventually lead to a heart attack which the patient may or may not have survived. They say that a little knowledge is a dangerous thing. In this case, limited knowledge and the desire to know more along with the willingness to ask questions really benefitted the patient.

These are just 3 of the many cases involving medical records and the importance of knowing what is in them. They are your records. It is your health. You need to stay aware of what is in them, and be sure to correct errors, ask questions, and know that ultimately you are the one who will be affected by what is written and stored in your medical file.

From the Life and Mind of
Wanda M. Argersinger, Executive Director
The Lupus Support Network
All Rights Reserved 2009

Defining My Life With Chronic Illness

For anyone who lives with chronic illness or has a family member or friend who lives with chronic illness, the days can certainly be a challenge. No one knows if a day will be good or bad, only that the days will be. We hear that lupus is a “chronic illness”. Most of us accept this at face value. I would like you stop for just a short time and ask yourself do you really understand what “chronic illness means”? Or do you simply accept the diagnosis of lupus, hear the words “chronic illness” and go about trying to control the symptoms?

I think if each person who has to live with lupus, or any other chronic illness actually took a little bit of time to understand those two words, they would gain a lot of insight in to their lives, the changes they might need to make to live successfully with a “chronic illness” and even gain some sort of control over, or peace in, living this new way of life.

Here are just a few ways to define chronic illness. As you read them, note the words in bold text. They are there to provide guidance and understanding of what patients of “chronic illness” live with everyday.
A chronic disease is:

• A disease that is long-lasting or recurrent
• An illness that persists for a long period of time
• A condition that is long-term or permanent, as opposed to acute, and which needs to be managed on a long-term basis
• A condition that lasts a year or longer, limits activity, and may require ongoing care
• An injury, illness or condition, which does not require hospitalization, which may be expected to be of long duration without any reasonably predictable date of termination
, and which may be marked by recurrences requiring continuous or periodic care as necessary
• Long-term or permanent illness that often results in some type of disability and which may require a person to seek help with various activities
• A persistent or recurring illness or set of symptoms

These words, if read in the wrong frame of mind can be interpreted as extremely depressing. They are not meant to be. They are meant to be realistic, motivating, and encouraging. How is that possible?
First, when you read these words you will see that most “chronic illnesses” have no end in sight. How depressing is that? If would be if that is all you focus on. But change your focus for just a minute and see that this is your new life. No one’s life is ever constant without changes. Those of us who live with “chronic illness” simply have changes that manifest themselves medically. We need to find a way to live life, just as you have lived before.

Long, long, long. You will see those words all over the above definitions. Managed on a long term basis; long-lasting. The one place it doesn’t say long is when it comes to your life. Most lupus patients live a long, though changed life. With early diagnosis and proper care long can be a good word in your life.

Recurring illness or set of symptoms? Well, I for one am glad that the symptoms are recurring and not forever changing. I have pain in my back, and I know how to deal with it. I have severe headaches and have just the medicine to take for it. I have nausea and carry Zofran to combat that symptom. I have chronic pain but have learned how much to deal with it and when to seek pharmaceutical help. I live with fatigue and know when enough is enough and that it is time to rest. I know that I cannot go out in to the sun or I will be in bed for the next few days. All of these are my recurring symptoms. Now, throw in something new, a non-recurring symptom and I am lost, confused, panicked and will probably race to the doctor immediately or even worse, call the ambulance.

Seeking help? That is one of the most difficult things for most of us to do, especially if we don’t have someone who lives with us who can help. It is natural not to want to be a burden on anyone. But reverse the situation. We would be there to help our friends and family if they needed us. Why should we be any different? Very few of us are in situations where there is absolutely no one to help. Help is there from friends, family, communities, churches, and many other organizations. Everyone needs help at some time in their life. You may think you know people who appear strong, independent and never need help. You are wrong. It is human nature to need help for different things at different times in our lives. Just because you don’t see it, or are not aware of it does not mean it doesn’t happen. Why should you be different?

The worst part of the definitions above, for me, is the word limit. I hate limits unless they are self-imposed. Add activity to limits and it gets even worse. Especially when the limits may not be known until a few hours before some scheduled activity. But even that can be dealt with. We can all find ways to enjoy most of the activities we like, and still stay within the limits our disease requires to stay healthy. For instance, if there is some family event, I try always to go to the event and not bring the event to me. Then if I tire early I can always lay down there or head to my house. I never go the first hour or two, but wait until most of the family will be there at the same time. And I have an idea ahead of time about how long I can stay. If I think I can stay two hours and make it that long, then I see the event as a success. And maybe I can even stay longer. I haven’t set myself up for disappointment and I haven’t lost out on an important part of life. By doing these three things I can still enjoy time with family. With a little thought and understanding of your “chronic illness” you will be able to determine what works best for you with regards to most events.

For other events, especially evening events, I may rest the day of the event, limiting my activities and energy expenditure. This way, I am more likely to be able to go to the event and enjoy my time there. I also plan for a slow day the day after the event. I’ve made these changes a part of my life, so the planning for me comes naturally now. I’m not even aware I am doing it.

Do I let my “chronic illness” define my life? No. Do I allow my “chronic illness” to govern my life? Maybe to some extent. But I like to view it as a natural change that has happened in my life. New things to adapt to. A maze that I must find a way to get through. An adventure of sorts. Every day I learn more about what I can and cannot do. I learn new ways to make my life meaningful for me. I adapt and change the way I do things so I can still do and enjoy the most important things in my life. I still read. I still write. I still spend time with my grandchildren in the pool. I still go out with friends. I am still me. I have definitions of what “chronic illness” is and I have my definition of what “chronic illness” means to me and how it affects my life.

You can use these definitions to define your life with “chronic illness” or you can use them to free yourself of the constraints of these limited definitions. You define who you are. Through knowledge we direct and build our lives and become the people we are meant to be. I hope you choose your own definition of who you are and the life you will have while living with “chronic illness”.

From The Life and Thoughts of
Wanda M. Argersinger, Executive Director
The Lupus Support Network

It’s In Your Hands

Do you have a copy of your medical records? Why not? They belong to you. If you do have a copy, are they complete or simply include the records from only one physician? Do your records include copies of the results of all the laboratory tests you have had done? Copies of the results of all procedures you have had done? Copies of any and all x-rays, CT scans and MRI’s in digital form? Physician notes? Do you have dates, locations and physician names? This information may sound unimportant to you, but when it comes to future treatment with regards to your health, each of these pieces of information could be the critical information that determines the course of your health care.

Recently I had to go out of town for medical treatment. I was told to bring all my medical records with me including x-rays, MRI’s, ct scans, etc., in digital format. I did just that. My medical binder is lovingly referred to as War and Peace. A great name I think, as it is large, assembled by one person, and certainly is the story of a person at war and at peace with her own body.

Ok. Now that you have an understanding of how critical and vital it is that you maintain your own set of health records, you are probably saying, I agree, but where do I begin? The doctors won’t give them to me? I’ve been to so many different physicians, where do I begin? Well, it’s actually much easier than you thought. It just takes some organizing, planning, and effort on your part. But it will be worth every bit of time you put into the process.

When HIPAA (Health Insurance Portability and Accountability Act) was passed in 1996 not only did it ensure the privacy of your medical records it also gave you access to all of your medical information. In short HIPAA says Health Insurers and Providers who are covered entities must comply with your right to:
• Ask to see and get a copy of your health records
• Have corrections added to your health information
• Receive a notice that tells you how your health information may be used and shared
• Decide if you want to give your permission before your health information can be used or shared for certain purposes, such as for marketing
• Get a report on when and why your health information was shared for certain purposes
• If you believe your rights are being denied or your health information isn’t being protected, you can
o File a complaint with your provider or health insurer
o File a complaint with the U.S. Government
You should get to know these important rights, which help you protect your health information. You can ask your provider or health insurer questions about your rights.

Now you know you can get the copies so it’s time to set about gathering all this information that is being stored in files all around town at various doctor’s offices. First make a list of all of your physicians and their telephone numbers and begin calling their offices. The easiest place to begin is with the physician you see the most often. Simply pick up the phone, tell them who you are and that you would like to get a copy of your medical records. They may ask you why, and this may seem like they don’t want to give them to you, but often they are just checking to see if the records are for another physician. In that case, they would normally send them to the new physician free of charge. But if you allow them to send records to the other physicians, you never get your hands on them. Simply tell them that you want to become an equal partner in your health care and as such you need copies of all of your medical records. They may say they charge for copying them for you, and by law they can only charge a nominal fee. It should not be exorbitant. Once you have a copy of these records, then move on the next physician. Continue the process until you have all your records.

Once you have them in hand, organize them in one place, such as a three ring binder, and be sure to take them with you to the hospital, any new physician or anytime you are seeing physicians away from home. Additionally, any time you see one of your regular doctors for normal visits, ask them for copies of all lab results, test results, and physician notes after they are dictated. You may want to take your own notes during the visit and record things such as height, weight, blood pressure, pulse, temperature, and your understanding of what is discussed including any changes in medications.

If you begin this now, you will have your own set of medical records and not have to rely on others for information should the need arise. Remember, physicians go out of business just like all other businesses. If you don’t have your records before they close shop, this information could be lost forever. Additionally, what is in your hands may save you from unnecessary tests, procedures, time and expense.

Once when I had to go to the emergency room due to difficulty breathing, the physicians there heard fluid in my lungs. The immediate reaction was that I must have congestive failure and they wanted to do a heart catherization to confirm this. I opened my personal copy of War and Peace, showed them the latest results of the heart cath done just a few months prior, and was given an inhalation treatment instead of a heart cath. The ER physician said he wished all his patients had their information with them as I did. I was just glad I stopped the invasive procedure and could walk out in a couple hours instead of a couple days.

Your health is more in your hands than you realize. Begin today to take control or your health and your health records.

From the Life and Thoughts of
Wanda M. Argersinger, Executive Director
The Lupus Support Network