Julie describes her PV journey as one that was initially filled with confusion, anxiety and an unclear path. In 1997, just 6 months after her father passed away from Non-Hodgkin’s lymphoma, abnormal lab results and her recent family history prompted her doctor to perform a bone marrow biopsy. At just 26 years old, she didn’t think twice when the biopsy was all clear and she was given a clean bill of health.
Years later, an athlete and competitive mountain biker, Julie’s body suddenly refused to cooperate. After a noticeable change in her performance, she went to the doctor again. This time the doctor ordered a series of tests…and then an ultrasound…and then a heart catheterization. Her healthcare team had assured her, she was young, she was thin, she was in shape, she had no family history of heart problems, she was probably fine. Boy, were they wrong! Julie had a 90 % blockage in her left anterior descending artery. Now, in her 30’s, she was told she would need a stent. What, no way?! she was on her way to Miami Beach with her friends, she had a bikini all picked out, she was not doing surgeries and stents and hospitals. But that is exactly what she did. And afterwards, she felt amazing.
This is where we have to stop and ask ourselves, why would a young woman with no family history of heart problems, who was thin, fit and otherwise well have this kind of episode? Well, the doctors didn’t know, so they labeled it coronary artery disease, told her to cut back on salt and sent her on her way.
In 2008, Julie was racing motorcycles and working 60 hours a week. She was in charge of a large software roll out at the company she worked for…but something was off. In one week, her stomach was swollen, she lost her appetite, and when she did eat she was full almost immediately. By day four, she was so uncomfortable she couldn’t sleep, that’s when she headed to the ER. A percussion test revealed that her abdomen was filled with fluid (ascites) and they drained 2.2 liters that night. After being poked and prodded, they admitted her to the hospital and though perplexed, felt she may have ovarian cancer. The next six weeks were filled with various bouts of internal bleeding affecting multiple organs and bouncing in and out of the hospital, mostly in. It turns out, she had a serious clot in the hepatic vein that runs from the liver to the heart. Her liver was being strangled and “sweating like a quart of milk.” Not only was Julie unwell, but she was out of work during a pivotal moment for her company and her career. She felt as though was letting a lot of people down by being sick.
At this point, she had a team of doctors who reviewed her medical records for the last 15 years. Enter the young, vibrant (and I would like to imagine) attractive doctor with a brand new Jak2 genetic blood test. The results? Julie was positive, and so were her doctors. After a decade-long medical odyssey, Julie was formally diagnosed with Polycythemia Vera. Another member from her medical team told her, “Your life as you know it is over. You ride motorcycles, forget that, you’re not doing that. You’re 38, well you won’t have kids because you’ll have a high-risk pregnancy. You are going to be on blood thinners for the rest of your life..” And the list went on.
“You have to be feeling down, and then notice that if you start feeling more down, it takes twice the work to get back up again. And that’s what PV has taught me, so it’s not avoidance [of getting down] it’s more about where I am going to look? I learned that from motorcycling, wherever you look, that’s where you go.” Once stabilized, she walked out of the hospital, and looked up at the moon for the first time in 6 weeks. She felt lucky that she was even able to walk out of the hospital, some people were not.
She said she has learned to sit with the fear, anxiety, and frustration when they creep up instead of running from them. But she doesn’t stay there, “you can go cry in your room, but you can’t just stay there and die.” Julie remembers that people usually die with PV, but not from it and that she is living with cancer.
How did she cope? She started keeping track of how she felt each day. She was forced to get better at listening to her body. After a while, she saw patterns emerging and associations between her feelings and her lab work. For example, when her hematocrit spikes her scalp gets itchy and her fingertips get red. When this happens she knows it’s time for a phlebotomy. The more she knew about herself, the more she felt she was able to take care of herself, and that confidence reduced her anxiety. From there, she was able to start talking to the people around her about what she was experiencing and what she needed. She was even able to begin to direct her medical team, sharing with them important associations and symptoms that they could use to make better decisions about her treatment together.
Four years after her diagnosis, Julie and her husband welcomed their son into the world. Pregnancy suited her, and her PV. Not only did she become a mom, she also became a mentor to MPN patients. She said that what she went through, and what she still goes through is more purposeful if she can share it to help someone else feel less afraid, less isolated, and less confused.
Julie emphasized that PV has been and continues to be a journey, she hasn’t arrived, the journey is still in process. She said, “PV is the gift I didn’t want because it made me more grateful for the life I have, more aware of the people around me, more open to the world and its beauty…and it didn’t start out that way.”
If you want to learn more about Julie’s journey you can see her talk about her story on Facebook or read more about her at Woman’s Day. She also did a quick video about itching and is available to connect with other patients at pvmamawarrior@gmail.com.