Posted on behalf of community member Mary Ann Massolio, Hematology/Oncology Social Worker,...
The Story of My Diagnosis
Read our Victory Spotlight Chapter Staff Honoree, Melissa Reike's Post: 'Story of My Diagnosis.'
My earliest recollection of bleeding issues began with having my tonsils removed in 3rd grade. I had significant bleeding during and after the surgery and I remember waking up in my hospital room with a priest standing next to my bed. Not something I was prepared for at that age. I also dealt with bleeding issues during my menstrual cycles. Bleeding through my clothes became a norm in my life along with lots of bruises. I was always anemic and having to take additional iron supplements. When I was 18 years old I was diagnosed with elliptocytosis which explained the anemia issue. I can vividly remember discussing the bleeding issues with my doctor(s) but was always told that I was fine and that the heavy bleeding was probably just a family thing. In 1987 I had my first knee surgery that resulted in bleeding issues.
Life continued and I became pregnant for the first time in 1988. That pregnancy ended in a miscarriage. I became pregnant again in 1989 and I carried the pregnancy to full- term but had bleeding complications after delivery and spent additional days in the hospital. I became pregnant for the third time in 1990 and had bleeding issues from the start. Numerous times I was evaluated because my OB/GYN thought I was going to miscarry again due to the amount of bleeding I was having. Six months into the pregnancy I went into pre-term labor and was started on medication. Luckily, I was able to carry the pregnancy to full-term. I was discharged from the hospital 24 hours after the delivery. During the first week at home after delivery, I began bleeding profusely. It became so bad that I had to crawl across my living room floor to get to a phone to call for help. My neighbor was able to get me to the hospital where I was met at the door with a wheelchair. I was told that my hemoglobin was 5.2 and I was immediately admitted for a blood transfusion. This happened two additional times. Eventually the bleeding was controlled.
As my menstrual cycles returned, I began having issues with severe bleeding along with ovarian cysts that I had dealt with previously. In 1992, at the age of 29 years old, it was decided that I should have a hysterectomy. I will never forget waking up after the surgery with severe pain and when the nurse touched my abdomen to check the incision it felt like someone was crushing potato chips inside of me. All I felt was crackling and then I was told that I was hemorrhaging. A second surgery was done within hours of the first. I remained in the hospital for a number of days receiving blood products due to continued bleeding issues. Within two years I needed to have another abdominal surgery but the doctor that was going to perform the procedure would not do so until a hematologist evaluated me.
For the first time, I had a doctor that actually listened to me and seemed determined to get answers. The answer came when Dr. Theera Umsawaadi diagnosed me with von Willebrand’s. With his assistance, my surgeon was able to perform the procedure without complication. Three years later, our daughter was in need of dental surgery and required clearance from hematology due to the family history of bleeding. This is when we had our first visit to a Hemophilia Treatment Center. We were introduced to Dr. Keith Hoots at Gulf States Hemophilia and Thrombophilia Treatment Center. Our daughter was diagnosed with QPD (Qualitative Platelet Disorder) at the age of 7 and our son was diagnosed with QPD at the age of 16 when he had to have spinal surgery. It was the social worker and a nurse from Gulf States that connected us to our local hemophilia chapter, The Lone Star Chapter of the National Hemophilia Foundation.
In 1999, my daughter and I attended our first women’s retreat that was organized by the social worker at our HTC. In the years that followed, I became a member of the Planning Committee for the women’s retreat that ultimately resulted in my becoming more involved with the chapter as well.
By Melissa Reifke
Lone Star Chapter of NHF
Victory Spotlight Chapter Staff Honoree 2018