Hi, my name is Jyll and I was born March 24, 1973 in Toledo, Ohio. I was so glad to have found this website through Kaytee, one of my GT sisters because I’m not alone anymore! When I was born my umbilical cord would not stop bleeding. After three weeks it was cauterized. I was about five months old and from rolling around in my play pen my mom noticed that there were bruises on me. The doctor sent me for my first bleeding time test. The bleeding time was more than 10 minutes so my pediatrician sent me to a hematologist. After more blood work the hematologist diagnosed me with Von Willebrands Disease at nine months of age. My great grandmother was from Finland and had a history of bruising and nose bleeds. Von Willebrands disease was associated with the Alland Islands off the coast of Finland, so we thought that was the familial connection.
My mom hoped that vitamins would take care of the problem, but she realized the journey to learn about my blood disorder had just begun!
When I was two, I was tested again as the episodes of bruising and bleeding had continued so much that my Grandma sewed pot holders into my pajamas so my knees wouldn’t bruise so much! The test showed that I had GT and the story begins from age two.
One of the first major bleeds that I had I don’t remember, but my family does. We were all playing in the back yard in summertime. I had a dog named Baby and I loved to play with her. I was playing with her and she bumped against me, and I fell forward and smashed my face on our motorcycle trailer. Accidents happen even when parents are right there. My mom was there and rushed over and knew this was bad. I had almost bitten my tongue in half.
She scooped me up, had the neighbor Debbie scoop up the rest of the kids and we all jumped into the car and rushed to the hospital, with Debbie holding a wet towel on my mouth and my mom driving like a maniac. No cell phones back in those days to call for a police escort or ambulance quickly we just did it ourselves.
The ER staff didn’t have a clue what GT was, and of course they never think a mom knows what they are talking about. I wouldn’t stop bleeding and they had never experienced a trauma like this in a three year old with a bleeding disorder. They kept saying to my mom “don’t you mean thrombocytopenia? Finally the hematologist called the ER staff and things began to get in better order. Amicar was ordered and I was treated that way for my first trip to the hospital emergency department.
That was the first of many trauma crises during my younger years. At age 12, just three months after I began my menses, I had a major crisis. My hemoglobin dropped to five. We were downtown at a concert with my step-sister. I was the one who always ran ten steps ahead of everyone, but that day I could barely climb the stairs. My mom took my pulse at the concert, and it was 180, she immediately called the doctor. I spent a week in the hospital, and that was when I received my first blood transfusion.
Information about AIDS had just started coming out all over the news, and I was so scared that I was going to get it from the transfusions. Mom and the nurses and everyone tried to assure me how well the blood was tested, and that we did not live in a High risk area, but no one really knew much then. We all prayed, Mom told me later she was scared too, but I had to have the blood transfusions.
I was put on birth control pills and depo Provera also, to control the menses, and had gynecological problems for many years.
At 17 I complained all of the time that my side hurt. I was feeling constipated, and miserable. One night I was with friends at a movie, and I had to come home, the pain was so bad. My pediatrician had been treating me for indigestion.
My mom called the next day, made an appointment, and we saw the doctor. This time I saw a different doc in the group, a woman who pressed around my abdomen and sent me for a STAT ultrasound, where they found a cyst on my right ovary the size of a grapefruit. No indigestion……I was in trouble.
By the way, my mom is in the medical field, and she never took any excuses from the docs. She was on top of it all, and I was lucky she could sometimes get me in for tests at the head of the line, if needed. She knew who to call.
In 1991 I had my cyst removed, but unfortunately the doctor had to remove my right ovary and tube. Then a few years later, I developed cysts on my left ovary. In 1996 I had to have those cysts removed, which only left me with 20% of my left ovary. At age 30 I finally had enough bleeding, pain and feeling bad that I agreed to have a hysterectomy to improve my quality of life. Although this was a very tough decision for me and I went to see two different Infertility specialists, I knew this would be the best decision for my quality of life. Yes, my life has been so much better since despite the hormone issues I have endured. The hysterectomy was my first introduction to NOVO 7. I knew all about it as I have been my own advocate, but the docs, and nurses did not. We watched like hawks, to make sure it was administered correctly, but even so, my doc gave platelets in the OR as they were not sure if NOVO 7 would work.
I went about the next years of my life, up and down with nosebleeds, bruising etc., always taking Amicar as the only med then. One nosebleed episode was horrendous. I could not get it to stop, whatever I did, so I went to the ER close to my home in Toledo with my Mom. I had called my doctor in Michigan, and he asked that the ER call him. I requested that they call him, but they did not. As we looked back, both of us being strong, we don’t know why we just didn’t walk out and drive to the hospital in Michigan where he worked, but alas, bad news.
The ER doc and resident inserted a Rhino Rocket into my nose, and made things worse, I was in so much pain then, and they had problems, and I was admitted as an inpatient. What a mess……my mom stayed with me, and then a Doctor from Heaven was sent, Dr. St Vincent…….he was wonderful, allayed my fears and took wonderful care of me. After a few days of misery, and having to explain to EVERYONE about my blood disorder, I finally got to see my ENT, and he removed it…Horrible and painful experience. NEVER AGAIN FOR ME a Rhino Rocket!!
In September of 2013 I went for my annual mammogram and it was discovered that I had a lump in my left breast, and I had to have a surgical biopsy. I was given Novo 7, as well as Lysteda (tranexamic acid). A week later I was diagnosed with Breast Cancer. I decided to have a Mastectomy without reconstruction, as I was told reconstruction was not an option, due to bleeding.
I remain positive, and it is good to have met many others from the GT website, and attending the fundraisers in Georgia. My family is very supportive and understanding. I have come a long way since then, as have medications and of course my support from the GT Family!
~Jyll~
