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.”

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My Polycythemia Vera Journey to Empowerment

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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.

My Polycythemia Vera Journey to Empowerment

My Polycythemia Vera Journey to Empowerment from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm patient Mark shares his journey to patient empowerment. Watch as he discusses symptoms that eventually pieced together his polycythemia vera diagnosis, helpful support resources, activities that have aided him  during treatment, and his advice to help other patients.

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Transcript:

Mark:

My name is Mark, and I live in the UK. I was diagnosed with polycythemia vera (PV) in April 2021 after a long path to diagnosis that was complicated by COVID-19 restrictions.

In December 2020, I had a routine blood test that flagged elevated hematocrit. My doctor told me the laboratory would re-do the test after Christmas and not to worry. Meanwhile, I researched various causes of elevated hematocrit and began drinking (approximately) 4 liters of water per day just to rule out any dehydration.

I had the repeat blood test in January 2021, which showed elevated hematocrit again. Next, I was sent for a JAK2 test and referred to a hematologist. I was also switching roles at work and moving at the same time. The moving and medical care changes were worsened by UK-wide COVID-19 restrictions. 

I got moved and awaited the results. A month passed with no news, and I could only connect with my medical team by Internet or phone. The test results could take up to 8 weeks. Then I started experiencing some strange eye issue with blurry zig-zag shapes and itching around my ankles and general skin discomfort after showering. I also had a gray-out in one eye that was like a shutter closing over my eye for about 30 seconds. I read about elevated hematocrit and microcirculatory issues before and decided to ignore it until my appointment. 

I was still awaiting my test results in March with a consultant appointment booked for April, and my doctor decided to repeat the JAK2 test. The results came in, and I was finally diagnosed with polycythemia vera. I was simply told that I would receive phlebotomies and was given a pamphlet. I went for my initial phlebotomy, and my journey began. Around that time, I told my doctor about the vision issues. They immediately referred me to the TIA clinic to investigate mini strokes and started me on aspirin. I  had no signs of a TIA, but the symptoms could not rule out the possibility. Fortunately, the vision issues stopped after my second phlebotomy.

I found the MPNVoice website and began learning about MPNs, which proved invaluable and helped me grasp my situation. It was so helpful to find others who lived with MPNs well beyond the Google-searched life expectancy, and reading their stories gave me comfort. Physically, I noticed that I had slowed down and was feeling sorry for myself, which isolation from COVID-19 restrictions didn’t help. I decided to start volunteering, re-started some yoga, and started exercising. I experienced immediate benefits and find keeping active is now a must.  

Initially, my hematocrit level didn’t lower, and I received advice for my hematologist to be more aggressive with my blood draws. With sometimes weekly draws, my levels started dropping. It took 6 months to level out to my target hematocrit maximum. 

Upon reflection, some things that I’ve learned during my PV journey include:

  • Try not to panic about what you don’t know and can’t control – this allows you to focus on the important stuff.
  • During the testing and diagnosis stage, try not to search too much on Google – it’s not helpful!
  • Finding others who are in the same situation can make a rare illness less rare and far less scary.
  • Keep active and don’t overthink everything. If you start feeling sorry for yourself, do something about it.

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

My Journey of Living With a Myeloproliferative Neoplasm for 30 Years

My Journey of Living With a Myeloproliferative Neoplasm for 30 Years from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm patient Nona was shocked after diagnosis with two MPNs – essential thrombocythemia (ET) and polycythemia vera (PV) – at the age of 41. Watch as she shares her MPN patient journey over 30 years. Nona’s advice to other MPN patients, “Use your voice, you are not alone, make sure you establish a good relationship with your care team. You are truly your own best advocate!”

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Transcript:

Nona:

My name is Nona. I live in West Sussex, England. In 1991, I was diagnosed with essential thrombocythemia (ET) and then polycythemia vera (PV) in 1995, both myeloproliferative neoplasms (MPN). This came as a big surprise to myself and my husband. At the time, my care team said there were only 12,000 known patients in the UK living with my condition. At the time of my diagnosis, I was 41 years old, a wife, and a busy mother to three children as well as having a part-time job.

Prior to my diagnosis (with symptoms of painful feet, ulcers on my toes, and chronic tiredness), I was seen by three different clinicians. One doctor told me that my blood work had suggested that I had an alcohol issue and that I was somehow in denial. That really scared me, as I hardly drink alcohol. My research led me to nowhere at the time, as there was very little information about MPNs available. At that point in time, they were called blood disorders. When I read the leaflet with the prescription medication, it referred to treatment for cancer.

I went back to my primary care physician as I really felt very frightened and confused. I learned that MPNs were a proliferation of the blood cells, but not cancer in the conventional sense of the word – in other words, a chronic treatable disorder. Having lived with an MPN for over 30 years hasn’t always been an easy journey. But over the years, a more accurate early diagnosis and treatments have progressed beyond belief, and for that I am grateful. I have never forgotten the difficult feelings of anxiety and fear when I was first diagnosed.

In 2005, I had a second opinion from a respected MPN expert who started a charity, now called MPNvoice. The mission is to provide up-to-date, accurate information to both the medical and patient communities. I have been fully involved with the charity since then and now serve as co-chair reaching out to patients around the world.

My advice to other MPN patients: it’s important to remember everyone’s MPN journey is different and some patients struggle with more symptoms than others. Don’t let your MPN become your life if you can just see it as part of your life so that you can get on and live your life. Use your voice, you are not alone. Make sure you establish a good relationship with your care team. You are truly your own best advocate.

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

My MPN Journey, Getting the Best Care After ET and MF Diagnoses

My MPN Journey, Getting the Best Care After ET and MF Diagnoses from Patient Empowerment Network on Vimeo.

Myelofibrosis and essential thrombocythemia (ET) patient Julia had experience as a health educator and hospital administrator before receiving her MPN diagnosis. Watch as she shares how she later connected the dots from her symptoms and blood work, lessons learned about myelofibrosis patient journeys, and her advice for living well with MPNs.

Related Resources:

Expert Advice for Learning About Your MPNs Online

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Transcript:

Julia:

My name is Julia, I was diagnosed with essential Thrombocythemia in 2007, and then with myelofibrosis a year later, after a routine blood work. The diagnosis came out of nowhere. I was healthy and active prior to my diagnosis and raising five children with my husband. I’ll never forget the day I received a voicemail from my primary care doctor’s office, I really couldn’t believe what I was hearing. I didn’t have time for this illness in my life. I had a bone marrow biopsy that showed I was positive for JAK2 and had a 5q deletion genetic mutation. I started on daily aspirin, and it was a hard pill to swallow for many reasons.

As a certified health educator and former hospital administrator, I understood the importance of treating a rare disease, but I had a difficult time with the idea of taking medicine daily, and I felt like I didn’t have any symptoms. I reviewed my old lab print-outs that showed elevated platelets 15 years before, that slowly increased over time. I recall having severe migraines that would put me out of commission for the day, and tenacious fatigue in the years before, I didn’t connect the dots with the symptoms, and neither did my oncologist. By 2007, my platelets and white blood cells were very high.

I decided to find an expert with extensive experience with ET and MF to get top-notch monitoring and treatment. I connected with a specialist for many years and hope to keep living with my disease for many years ahead. I’ve had several hospitalizations and ER visits over the years, but keep on going. MF has absolutely changed the path of my life and how I live it, but I still do most of what I want to do while I’ve been lucky in maintaining stable myelofibrosis with no true signs of disease progression or serious myelofibrosis complications, it’s important to understand the path for other myelofibrosis patients might be quite different.

My advice for others MPN patients is:

  • Pay attention to how you feel and pace yourself
  • Keep track of your blood counts, so you can alert your care team
  • Find an MPN specialist for your care
  • Don’t forget to be present and spend time with your family.

These actions are key to staying on your path to empowerment