Managing My Personal Health Record: My Story of Living with Lupus

When I was 15 years old I was diagnosed with Systemic Lupus Erthamatosis (Lupus). My parents and I didn’t really know or understand what Lupus was, but we knew that people died from it and that I needed to be extremely careful with my health. I remember how scared I was, along with being in extreme pain, barely able to walk. In addition I was puffy and losing my hair as a side effect of my medications.  For me, the Lupus subsequently caused multiple other chronic illnesses, including Rheumatoid Arthritis, Fibromyalgia, and Depression. I remember going from doctor to doctor, getting test after test and then, one day, somehow, someone lost my entire set of medical records from birth until age 15!

In most cases, for any normal, healthy person, losing one’s medical records may not be a big deal, but in my case, it was tremendously dangerous in the midst of the beginning stages of treatment for an autoimmune disease that needed to be managed. Not to mention it was costly to my health insurance plan.

I keep track of my own personal health records and information

It was the experience of losing my medical records that taught me the importance of knowing and managing my own personal health records. My parents and I requested a copy of my medical records, knowing that we couldn’t always trust that our paper records could be found. As part of that, we kept our own records of my doctor appointments, tests, and medication.

Now, as an independent adult, I take even more control over my own medical records. In addition to wearing a medical alert bracelet, I keep a Medical Emergency Information sheet in my wallet that includes my:

  • Name;
  • Address;
  • Phone Number;
  • Date of Birth;
  • Emergency contact names and numbers;
  • Medical power authorization;
  • A list of allergies and my reactions;
  • A list of all my diagnosed medical conditions;
  • A list of all my doctors and their phone numbers;
  • A list of all my medication and the prescribing doctor; and
  • Medical encounters.

This was a key step to managing my health information and ensuring that in case of a medical emergency I am able to provide all of the necessary information to those medical personnel treating me. However, this long list also requires a lot of after-the-fact follow-up on my part and re-printing of the paper I keep in my wallet. Given the regularity that I see some doctors this can become quite burdensome.

I manage my care with a Personal Health Record

Thanks to technology, I am now able to manage and control all of this information and more through my personal health record (PHR). I use Microsoft’s Health Vault because I am able to link it to my iTriage account. Both of these products are available as free apps on my iPhone (and are available for Android phones as well).  Like many people, I am almost lost without my smartphone. While that may be a bad thing in some regards, in others it is a positive.

For example, after my last doctor’s appointment my Personal Health Record allowed me to:

  • Log in the visit encounter
  • Upload the care summary information the doctor printed for me
  • Update my medication list, and
  • Note that I had to visit the lab for blood tests.

I also use my health plan’s patient portal

I am also privileged because my health plan (Kaiser) provides their members with patient portals. Through the portal, I can:

  • View all of my lab results
  • See my medication list
  • Sign up for medication refill reminders and refill my mail-order prescriptions online, and
  • Communicate directly with my doctors through a secure direct message

Most importantly, I never have to worry about losing my paper medical records and having no information about me and my medical history ever again.

Patient portals and Personal Health Records are such vital components of helping me manage my health and make sure that my medical team has all of the most up-to-date information they need to treat me—especially in the case of a medical emergency where I may be unable to communicate my conditions and lists of medications and allergies. By taking control of my personal health records, I have taken back my life.

My Personal Health Record has improved my health

I have now been living with Lupus for more than half my life and am healthier than I have ever been.  While I may suffer from pain and still have certain physical limitations, I consider myself extremely fortunate knowing that I could be in a more debilitated state, unable to work or even walk. I can attest to the fact that Personal Health Records can improve health outcomes and save lives.

Even someone who is “healthy” should take control of their own health with a personal health record.   I would encourage everyone to download their own Personal Health Record today and engage your physician in a conversation about how you can work together to manage your health at your next doctor’s visit. It’s good for you and it’s good for them.

I’m looking forward to Blue Button

There are several options out there that you can choose from for your Personal Health Record.  Personally, I’m looking forward to the wider launch of Blue Button because it offers a number of features that will truly empower consumers by providing them with the ability to do everything from printing a physical copy to sharing it with a third party application. More information about Blue Button can be found at healthit.gov/bluebutton.

How has using a Personal Health Record helped you manage your own health and care? Please share your experiences in the comment section below.

May is Lupus Awareness Month. For more information about Lupus, visit the Lupus Foundation website at www.lupus.orgExternal Links Disclaimer.    

6 Comments

  1. Robin Williams says:

    I’m sorry for the disease you are suffering from which is really fatal. But I must say you have taken great effort in managing and improving your health conditions on diagnosis with Lupus on such an early stage. You are source of inspiration for every patient to take an active role in their own healthcare. A personal health record is designed to grow as your needs grow or your health.

  2. What a powerful and courageous story, thank you for sharing your journey. It is encouraging to hear your personal story of how health IT empowers you to manage your health and well being over your lifetime.

  3. I am so impressed with how you took control of your health and you have convinced me how Personal Health Records can improve health outcomes and save lives.My neighbor’s son died at the age of 22 form LUPUS and I do wonder if his life could have been saved. Thank you for sharing your story.

  4. Tracy,
    I love two things about your post here:
    1) Your willingness to share your personal story with others.
    2) Your initiative to take control of your own health.
    Thanks for sharing
    Roger

  5. Kriya Yoga says:

    It is sad to read stories of illness that are declared potentially fatal and have no apparent known successful treatment in western medical society. Wastern medicine such as TCM and other alternate therapies sometimes have other approaches. Spiritual healing concepts going deep into root causes of illness also may have a different point of view and different solutions.

    The key point for success is your starting of accepting responsibility for your own condition rather than leaving responsibility to others (MD). Own body and soul is own responsibility and often own approaches to life changing and attitude changing forms of therapies may be advised.

    There are societies on earth that cure illness with God’s help by fine-tuning inner being with outer being and reconnecting with our creator. One such solution could be deep meditation techniques that include loving lifestyle in addition to precise techniques to heal the energy system and thus enhance or heal our immune system.

    Other approaches may be acupuncture – with similar goal – to heal or re-establish immune system and balance energy flow through all meridians of body. Never accept an illness as incurable simply based on the fact that no cure has been found yet.

  6. conso says:

    I am really impressed with how you took control of your health. Personal Health Records can improve health outcomes and save lives. A friend died at the age of 22 form Lupus and I do wonder if his life could have been saved. Thank you for sharing this story.

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