RAISING MPN AWARENESS ONE CONNECTION AT A TIME

RAISING MPN AWARENESS
ONE CONNECTION AT A TIME

 

FINDING AN MPN SPECIALIST

Author: Pete G, Community Voice Champion

My name is Pete, and I just turned 66 years old. I was diagnosed with primary myelofibrosis (MF) in January of 2014.

My MF journey began with my annual physical. For years, my primary care physician had been tracking my slight anemia, along with the protein in my urine. This time, however, there was quite a bit more protein than usual, so I was referred to a nephrologist. After additional testing, I was then referred to a local hematologist/oncologist, also known as a Hem/Onc. A bone marrow biopsy was performed to rule out multiple myeloma. Unfortunately, the results confirmed that I had myelofibrosis.

Although my oncologist was not an MPN specialist, he was able to get me into a clinical trial. During this time, my wife and I did not feel we were getting enough information about my disease, so we started searching the Internet to learn more.

We continued to search for helpful information and support and finally came across an online support group on Facebook. In fact, we found several Private Support Groups! We paid close attention to what people were saying and learned quite a bit! One important takeaway was how important it is to get a second opinion from an MPN specialist. We confirmed that our insurance company would cover a second opinion from a specialist and identified one out of state that could see us. Seeing the MPN specialist was tremendous. He performed a variety of different tests and also performed a new bone marrow biopsy. Everyone from the nurses, technicians, and doctors on my specialist’s team were in sync and well informed.

After much consideration, my wife and I decided to sell our home and move to this new city where our MPN specialist was located. I know that not everyone can just pack up and move, but for us, having the opinion of an MPN specialist is a vital part of this ongoing journey.

Seeking out a Healthcare Professional experienced in treating MPNs may provide you with access to different medical resources and facilities. He or she may also offer more detailed information about your condition. Some reasons to consider seeing a specialist might be:

  1. You want another opinion about your diagnosis or treatment plan
  2. You want to explore specialized treatment options
  3. Your current doctor has limited experience with your condition

To get more information about the benefit of seeing an MPN specialist—and learn how to find one—hear from an oncology clinical nurse educator who specializes in the treatment of MPNs including MF.


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