Most of you will know my story, but I wanted to give the background before explaining what’s going on now.
I was diagnosed in May 2003 with polycythemia rebra vera (PCV), a rare but manageable blood condition. With medication and occasional phlebotomies, I was able to continue working and have a normal life. In January 2010, my spleen was removed (enlarged spleen is a side effect). My platelets went crazy. I was the third case of record to have this happen. Multiple apheresis were necessary to prevent a stroke. It took a year and a half to two years to get the PCV manageable again. (There are only 100,000 people with PCV in the US.) I had been relatively health during that period (oh, except for that brain surgery caused by the car accident in 2016!)
This February, I started feeling really tired. Blood work and a bone marrow biopsy in March showed that in addition to the PVC, my bone marrow has myelofibrosis (scarring). This is somewhat expected, result of PCV. The best course of treatment for the myelofibrosis is a bone marrow transplant.
I have met with members of the Stephenson Bone Marrow Transplant (BMT) Center and will be having a BMT this summer. Fortunately a donor was found very quickly, and the donor matches on 10 of the 10 proteins needed! While the BMT is a long and difficult journey, I am blessed to have the absolute best support from my family and friends. I have been blessed with my doctors and nurses at Norman Regional Cancer and Oncology, they continue to be amazing. I have also been blessed with my office family, they have been so understanding and supportive. I will be retiring the end of June and will miss them terribly.
Fifteen years is a long time to be sick. After the transplant, the PCV will be gone and I will be well. Phew, that chokes me up every time I think about it. I will try to keep this updated. I will be well -Laurie
Laurie's BMT was successful and was 95% engrafted. Unfortunately she did not make it to Day 100. The Epstein Barr virus caused multiple complications. She was hospitalized on Day 56, went into a coma on Day 64 and did not wake up. Laurie passed away on October 10.