–by Margaret Warner with Michael Warner
It took me a long time to write this profile of myself because it forced me to re-live what has happened to me. That, in itself, is painful.
As some fellow patients of rare diseases have done, I diagnosed my own case of Polycythemia vera. I wish I could tell you that I was a doctor who brilliantly discovered my problem. Sadly, I am a doctor who fought a system that mostly ignored and doubted me.
The process of getting an accurate diagnosis and treatment hurts to recall because I was always in pain. In late 2008. I began to suffer with severe neck, shoulder and arm pain along with symptoms of leg heaviness and numbness.
I had a surgical procedure in 2010 for a herniated disc in my cervical spine. Not only did I not experience any relief of pain from surgery, but I also suffered a blood clot in my left vertebral artery and a subsequent Wallenberg stroke. I then began feeling short of breath and wheezing. During this time I was seeing multiple physicians with no clear diagnosis. I was led to many specialists and the list of unusual symptoms was growing.
What was happening? I had been a physically fit 50-year-old woman. In addition to the pain, fatigue and brain fog, I began to experience severe migraine headaches and disabling itching after showers. I knew something was terribly wrong! Finally, I found aquagenic pruritis in my Google search. One explanation was P. Vera. I went back through all my recent blood work and there it was: my Hemoglobin and Hematocrit had been creeping up for a while. I referred myself to an out of town hematologist/oncologist.
Upon greeting me, the hematologist asked, “What is a healthy person like you doing at a cancer center?” I told him my symptoms, requested a JAK2 test, and asked that he confirm that I do not have Polycythemia vera. He honored my request, but added that he did not believe I had anything wrong with me. That changed, when the test came back positive and my HCT had climbed.
It was 2012 by the time my diagnosis was made. In that time I had accumulated every symptom of P. vera and the complications of an arterial blood clot and stroke. An 8-inch clot runs from my chest into my brain.
Despite having laboratory evidence of a condition and a complete P. vera symptom list, I still fought resistance from the medical establishment. After many phlebotomies and getting the counts down, I was told that because my Hematocrit was below 45, I could not possibly experience aquagenic pruritus. The hematologist recommended psychiatric care and even had a psychiatrist call me. The hematologist believed that I had developed a” learned response” to the itching and held onto it for some reason.
Rather than seek psychiatric care, I consulted Google/ YouTube and found Dr. Rubin Mesa (Mayo Clinic) and the MPN Forum. Dr. Mesa explained details on his educational videos that most hematologists do not know. Because Dr. Mesa is a leader in myeloproliferative neoplasms, his perspective is far reaching. He has seen people with high symptoms burdens despite standard treatment. I became and still am a patient of Dr. Mesa.
The MPN Forum community validated my symptoms. Many other people are experiencing the same complaints. Worse yet, they may be told that their symptoms are not “real”. I bet if they read their entire medical record, they would find their History to read only the doctor’s interpretation of their complaints rather than their own words.
My husband and I recognized a pattern in medicine: The doctor writes what he or she “thinks the patient is saying” into the medical record. Because I am a physician, I always get a copy of my entire note. We would review the History component of the document. This is the part that records my reported symptoms. Time and time again, we would find entire discussions omitted from my medical record. My own medical story was being censored from my health record!
Our frustration with medical care made us fierce patient advocates. As physicians, we elected to open the patient portal function of the electronic health record (EHR) in our private family practice. This would allow our patients to read everything in their medical record through a secure website. How would our patients react to reading their own record? Would they find errors or omissions? How would they correct an error? Worse yet, how would our staff respond to patient complaints?
As a physician and a certified professional coder, my husband Michael worked within billing & coding rules and federal patient rights to create a process for patients to engage with their health record. This resulted in a published guidebook. We created written rules of engagement for patients and providers. About this time I had to stop work, I was just too ill and Michael carried on the practice.
We formulated a means to allow all of us to be our own patient advocate. We highlighted federal rights in HIPAA (The Health Insurance Portability and Accountability Act 1996) supporting the patient advocate cause. You have the right to view and amend your medical record. Now the HITECH Act (Health Information Technology for Economic and Clinical Health Act) is mandating patients be able to “view and amend” their health records.
Our guidebook Rise of the Patient Advocate – Healthcare in the Digital Age was published in March 10, 2015 . Two weeks after publication, we began a research study to accommodate patient pre-histories in a family practice setting. In addition to being scanned into the electronic health record (EHR), the PreHx supplies content for the History component of the encounter note. After the visit, patients were given a copy of the entire note..
Healthcare in the United States is in trouble when it comes to quality, satisfaction and cost. Patients with chronic diseases suffer the most in a dysfunctional system. They are often victims of our system rather than recipients of good care. It is time to turn things around and you have an opportunity to improve your healthcare.
Patients should be “clients” of our healthcare system. At the very least, we should be able to express our complaints and have our words documented in our health records.
Patient Advocacy Initiatives was created as a non-profit educational patient advocate organization. Free Pre-History forms and short videos are available online to empower patients to be their own advocate. Since using a Pre-History, my record now displays “my medical story.” (I wish I had had this tool a few years ago.) This not only affirms my patient experience, but more important, allows me to move forward with my care. The focus of my medical encounters has shifted from defending my complaints to battling my disease. This gives me hope and makes me encourage all patients to take this type of active role in their healthcare.
MPN Forum has a special place in my heart. The information helped me find a diagnosis and get treatment. I look forward to functioning as an advocate for MPN patients in clinical trials. Meanwhile, I encourage you to be your own patient advocate.
Wishing you good health,