Tag Archive for: Self-education

Living With an MPN and Being Your Own Best Advocate

Living With an MPN and Being Your Own Best Advocate from Patient Empowerment Network on Vimeo.

 MPN patient Rita experienced an extended path to her diagnosis. Watch as she shares her patient journey of varied symptoms, how self-advocacy and self-education assisted in her care, and her tips on how to empower yourself as a patient. In Rita’s words, “Don’t feel bad about advocating for yourself. Your doctor has many patients, but you have only one you.”

See More from Best MPN Care

Related Resources:

How Can MPN Patients Become More Proactive in Their Care?

My Polycythemia Vera Journey to Empowerment

How Can MPN Patients Stay Up to Date With New Treatments?


Transcript:

My name is Rita, and I was diagnosed with polycythemia vera in March 2019 after nearly three years of wide-ranging symptoms. Like many patients, my path to diagnosis was long and required me to self-advocate.

I was generally healthy until my symptoms of polycythemia vera began. I first experienced one episode of neck, jaw and chest discomfort, and the hospital blood test showed somewhat elevated platelets, and elevated red cell distribution width (RDW); but the doctors weren’t concerned. Next, I started getting optical migraines that were also dismissed. These were followed by incidents of feeling weak and sweaty; some days with headaches, dizziness, and fatigue; and also looking like I had a sunburn on my face with bloodshot eyes. I dismissed these symptoms. Then I started feeling short of breath at times, especially lying down, and experienced intermittent stabbing underneath my left lower chest area.

After having blood tests done, I had to call to find out my results that showed high hemoglobin, high red blood cells, and high hematocrit levels. After I Googled my test results, the first thing that came up was polycythemia vera. Experiencing additional vision issues, abnormal blood test results, chest pressure, and “foggy headedness” that frightened me, my doctor finally referred me to a hematologist who confirmed my suspicions with a PV diagnosis.

Some things I have learned during my MPN journey include:

  • We need to feel comfortable advocating for ourselves, and we need to make sure our doctors are open to being our partner in healthcare rather than our ‘boss’ in health care.
  • We also need to educate doctors that what looks like “dehydration” on a CBC could actually be a rare blood cancer. 
  • Get copies of your own blood test results, X-rays, other medical reports, etc., and, within reason, try to learn what they mean.
  • Diagnosed patients should be allowed to self-refer to an MPN specialist rather than be dependent on their physicians to do it. 
  • We need to self-advocate as “women of a certain age” to make sure we’re not medically or symptomatically reduced to “it’s menopause.”
  • Be careful how you express yourself to your doctor, because a careless comment may throw off your path to a correct diagnosis.
  • Don’t feel bad about advocating for yourself. Your doctor has many patients, but you have only one you. 

These actions are key to staying on your path to empowerment.

Self-Education Is the Basis of Better Health Outcomes, Physically, Mentally, and Financially

We have all heard the phrase, “Hindsight is 20/20”. Yes, it can be, if we know to look and be retrospective and heed the lessons learned. However, too many of us don’t take the time to take advantage of hindsight and find ourselves caught over and over in the same tidal pool.

When my husband was diagnosed in 2002 with MGUS, the driving force for me to use as a guide to be proactive in his health as his advocate was the illness and subsequent death of my 5-year-old brother David, who was very rarely spoken of in my family. I always wondered why it was sort of secretive. I remember finding his death certificate in a chest and wondered about him for years until as a teen I asked my mother about him and his illness. You see, I was only 1-year-old when he died, I have no memory of him. What I know was told to me by my mother, many years after his death. He had leukemia, diagnosed when he was 4. At that time, it was a death sentence. He was in “treatment” but it was all experimental at the time. I asked my mother what kind of leukemia he had. She wasn’t sure. She knew she had to give him over 50 pills a day. I asked what they were, but she didn’t know. I couldn’t believe how little she knew about his illness or what was being done to him. I always felt that when hearing her tell me about David that she was guarding herself somehow. He was eventually sent home to die. Hearing the bits and pieces always struck a weird chord with me.

It was only as an adult accompanying my husband on his cancer journey with Myeloma that I began to understand the horrible cost to David and subsequently my parents and older siblings. I was always trying to investigate his illness from afar. So, now the seeds of questions that always remained with me and the illness and death of my husband has led me to where I am now. Those two experiences, especially the journey with my husband made me acutely aware on a daily basis of the urgent need for all patients to be educated in their illness, so they can openly and actively participate in their treatment not only of cancer but their overall health, mentally, physically and financially.

Overcoming barriers of bias both conscious and unconscious are still huge barriers that many patients face. Educating oneself seems to be a huge equalizer. Knowledge gives you the confidence to question, make better decisions, and to benefit from those decisions. It gives you relative peace of mind that the decisions you make are in your best interest and your family.

You may be asking how all of this comes together when in treatment for Myeloma, AML, or quite honestly, any illness. Simply, the more you know about your treatment the better equipped you are to ask the right questions about the cost of treatment, its side effects if you are going to have to take time off from work if there are other anticipated upcoming treatments that you need to prepare for. And, If your treatment is available in town or if you need to find treatment elsewhere. You can ask if there are other treatments available with perhaps less associated costs. You can prepare your personal finances and make sure your insurance coverage is the best it can be. Knowing your full treatment plan can help you gather the financial assistance you will need to help you get and stay on treatment.

There are many resources that you can easily access to educate you on your illness as well as give you information about financial resources for which you may qualify. They include help with travel for medical treatment, co-pay, deductible and premium help, utilities, lodging, and urgent financial help.

Many of the resources available today were not around to help my husband or I had no knowledge they existed and no one to inform us during his cancer journey and certainly not available to my parents with the cancer journey of my young brother in the early ’60s. Education can even be the playing field for many patients.

Becoming knowledgeable about available resources can help you control your stress levels which can benefit your overall health outcomes. And knowing that there are financial resources available to you can help alleviate some of the financial stress that comes with having a very expensive illness.

In one of the few conversations, I had with my mother, I asked how they found out about my brother’s cancer. She said they were told over the phone. The doctor said,” Your son has cancer and is dying”. I can’t imagine living that experience. My mother said she felt hurt and angry for it being so impersonal. She said this was a hurt for which she never forgave herself. This was a time in 1961 when the disparity in healthcare was even more glaring than it is today. My parents didn’t know how or were even encouraged to ask questions to participate in David’s care. David and our family suffered as a result.

I encourage everyone to take advantage of the learning opportunities available to them. Doing so will provide you with the peace of mind that you are getting the best care while managing the cost of your treatment and reducing overall stress to allow you to live your best life.