My Bleeding Story (2002)

When my first hematologist asked when my bleeding problems began, I said, "It depends when you start counting." The problem began in childhood, but the real problem began in 2001. Let me explain.

Childhood Symptoms

There is no question that I always bled more than other kids. I had blood in my urine at age 3, and I had frequent nosebleeds starting at about age 10. My Dad remembers that I always wanted (perhaps needed…) lots of band-aids when I scraped my knees or cut myself. When I started menstruating, my periods were quite heavy. But, I never seemed to be very sick from all the bleeding. It was just a nuisance, and my childhood doctor was never concerned about it.

The Bruises

The first indicator that this may actually be "something" was when the bruising started at age 21. I'd wake up with new bruises and wonder how they got there! When I developed a large bruise after a simple blood draw (see photos at right), my doctors suspected something weird was going on.

At that time, I was tested for von Willebrand's Disease and Hemophilia and a couple of other common bleeding disorders. All the tests were normal. My bruising was declared a "fluke."

February 2001: "I'm having a serious problem here."

I had been through a lot medically by the time 2001 rolled around. I had had several years of severe illness (diagnosed as a rare hydration disorder), a period of slow but steady recovery, and then a small setback when I had surgery to remove an ovarian tumor in late 2000. So, it didn't surprise me when my periods were messed up by the end of 2000!

But, something changed in early 2001. This was no longer just goofy bleeding from stress and medical stuff. I had two periods start very close together, the second of which began with five days of extreme bleeding. (This involved bleeding through tampons in as little as 30 minutes for several days.) I called my ob/gyn's office and spoke to the nurse, and I said, "I'm having a serious problem here." She asked some questions and said it was probably still just wacky post-op bleeding; it was up to me whether I wanted to be seen. I decided to just live with it. But not for long…

A Myriad of Tests

Over the next 20 months, I had pretty much every gynecological test known to man! I had a few biopsies, some scrapings, multiple ultrasounds, and eventually a hysteroscopy with D&C. We tried several different kinds of birth control pills, some of which helped a little but none of which cured anything. My periods involved anywhere from 16 to 25 days of bleeding each cycle -- sometimes bleeding so much that I couldn't even stand up long enough to make a dinner salad. Things were scary and stressful. I broke into tears more than once at school, and my ob/gyn seemed near tears by the end of my appointments a couple of times. We were both so frustrated. My blood work kept getting worse, indicating low iron stores and low red blood cell count. I was bleeding too much. It was so clear that something was wrong, but what was it??

The Strange "Joy" of Critical Findings!

I will never forget coming home on September 25, 2002 and finding out that a doctor was trying to find me. It seems that my blood work had come back marked "critical." I had an unbelievably prolonged clotting time (my PTT was upwards of 2.5 minutes!). However, repeat testing did not confirm the problem, and another set of blood tests to check for von Willebrand's disease and hemophilia came back negative. The mystery continued.

The hematologist wasn't very interested in seeing me at first, but I wanted to have a conversation with him about all this bleeding. I told him my history and showed him the bruise photos. He ran a few tests to rule out the one thing we never checked for: platelet disorders.

Eureka! After three sets of blood work, it was finally confirmed that I have a significant problem with my blood platelets. I am deficient in dense granules in my platelets. Dense granules release chemicals that make platelets stick together, and so my platelets don't stick together properly to form clots. If you don't clot very quickly, you bleed and bleed and then bleed some more!

My official diagnosis is delta storage pool deficiency (or Delta SPD for short). This is a rare, moderate bleeding disorder caused by a structural platelet problem that causes them to function poorly. If that one test hadn't come back critical that one time in September, it might have been another year or more before we figured this out. So, thank God for one critical test result!

I'm starting treatment for this disorder in Dec 2002. There are two medicines that can help. If neither of those proves effective, I may have to try platelet transfusions. In some patients with Delta SPD, they are finding that bone marrow transplants can cure it! Platelets are made in bone marrow, so it makes sense that new marrow would lead to better platelets. I've got a long road ahead as I sort out information and treatment options. But, it's good to know what I'm dealing with. Finally.

And life goes on...

For more information about Delta SPD or bleeding disorders in general, follow these external links:

University of Michigan Health System Qualitative Platelet Disorder Information Page

National Hemophilia Foundation

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