Finally, a diagnosis

Until 4 years ago, I lived with my bleeding problems without really giving it a second thought. The nosebleeds, the gum bleeds and my monthly cycle had just become a part of my life (albeit a pain to deal with) to me it was “normal” and just the way I was.

One morning I woke up with large bruises on each leg. They went from my hip to almost my knee. I couldn’t remember hitting my legs and certainly didn’t do anything to cause that much trauma. After much prodding by my mom and my husband, I called my doctor’s office and spoke to a nurse. When I explained what was going on she got me an appointment the following morning.

The next morning the nurse did a finger poke to check my iron level. She came back in minutes later to check it again. She said if the level was correct I would need an immediate blood transfusion. My doctor came in to tell me that results were accurate and he wasn’t sure how I was even walking. He scheduled me for admission to the hospital the following day to receive an iron infusion. He also drew blood to check for cancer and scheduled a colonoscopy and endoscopy to check for internal bleeding.

All initial tests came back normal so the internist scheduled a test where I would swallow a camera so they could look more extensively for an internal bleed. While waiting to have my next test, I heard a commercial on the radio from the Utah Hemophilia Foundation talking about Von Willebrand’s Disease. The symptoms matched mine perfectly for once in my life I felt like a had an answer. At my appointment with the internist I expressed my concern about the upcoming test and requested he do a blood test for Von Willebrands. He refused saying that it would need to be my regular doctor who ran the test and “wouldn’t it be nice to be able to tell him there was absolutely no internal bleed”. Read here after you spend several thousands of dollars then we can do a simple blood test. I canceled the appointment for the camera test and scheduled an appointment with my doctor who was happy to do the test. It took about 2 weeks for me to get the call from my doctor.

I knew by the way the conversation was going (a lot of casual conversation up front) that his news wasn’t good. I finally asked for the results and he said the Von Willebrands test was normal. He then said that the test for Hemophilia, which I didn’t know he was running, showed that I have Hemophilia. Honestly, I was so afraid I couldn’t talk without crying. My only knowledge of Hemophilia was that of Ryan White, who died of AIDS because of a tainted blood transfusion giving to treat his hemophilia. My doctor is amazing and had me calmed down shortly after he told me what it was. Now that I look back I’m amused by my reaction. I remember recalling the date and thinking that I would never forget the date that my life changed forever. Today, I can’t even tell you the date. I’m pretty sure it was in July but I have no idea of the date.

Life before my diagnosis

All of my life I have had to deal with problems with bleeding.

I would get nosebleeds that would last 4-5 hours. I was a dancer and a gymnast and had problems with my knees. I went to the doctor several times for what we thought was water on the knees, I now wonder if it was actually a bleed. Surgeries were always scary. I had one surgery that should have lasted 1-2 hours that lasted 6 because they couldn’t stop the bleeding.

I actually feel blessed that I wasn’t diagnosed earlier. I can say that now because nothing life threatening happened before my diagnosis. Had I been diagnosed when I was younger I would have received blood products many of which were tainted with HIV. Many people living with a bleeding disorder are also living with HIV or AIDS and Hepatitis. And too many families have lost loved ones to AIDS.