Ellen

April 22,1992 - a day I'll never forget! It was the beginning of an ordeal that would shatter my belief that my health would be guaranteed as long as I ate healthy foods and exercised!

I woke up that morning with a blood blister on my lip and thought I must have bumped into my husband's elbow during the night (sounds better than him elbowing me!), but I felt fine otherwise, so covered it with lipstick and drove in to San Francisco to work as I did every day.

Around 10 a.m., I was munching on some almonds and noticed the taste of blood. I went into the restroom to check it out, and saw that my gums were bleeding. I thought maybe it had been too long since my last teeth cleaning and that I was finally paying the price for not flossing enough! But the taste of blood continued and I knew that wasn't normal.

Around noon, when it still hadn't stopped, I called Kaiser, my healthcare provider at the time, to report the symptoms and get advice. Apparently, the bleeding that wouldn't stop combined with the blood blister on my lip earlier that morning were enough to raise some flags for the advice nurse because she told me to go to the emergency room to have it checked out.

I drove myself to the South San Francisco Kaiser Emergency Room. When I finally called up to the window and was able to explain my reason for being there, the intake nurse was quite annoyed that I would come in to Emergency with what she assumed was a dental problem!

Nevertheless, I was taken into an exam room and, after a short wait, a doctor came in to assess the situation. In addition to my other symptoms, he found little purple dots across my chest that looked like an innocuous rash, except for the color. He ordered a blood draw, and after what seemed like a very long wait, he came back and said he wanted to check it again. After the second blood draw results were analyzed, he reported to me that I had something he had never seen - a zero platelet count! He had it checked a second time because he assumed the first reading had to be an error.

I was pretty scared at that point. I had gone through the agonies of my best friend's mother dying of leukemia, and knew these blood counts were significant indicators of serious illness. I didn't know much about platelets, though, other than they are needed for clotting when you get injured. I subsequently found out that even with a zero count, you have some platelets, just not enough to register on the blood test; and you can feel absolutely normal with no platelets!

The diagnosis was idiopathic Immune Thrombocytopenic Purpura, or ITP. It is an autoimmune attack on the blood platelets. Idiopathic means they don't know what causes it, but something tricked my immune system into producing "antiplatelet autoantibodies" that went after and very aggressively destroyed my blood platelets. Thrombocytopenic is the reduced platelet count and pupura are the purplish-looking areas of the skin and mucous membranes (e.g., in the mouth) where bleeding occurs as a result of the decrease in platelets. This destruction was taking place in the spleen, I was to find out later.

For the next two weeks I was in the hospital with everyone trying to figure out how to get my platelets back up to a safe level in the hope that I would either have a spontaneous recovery or could increase the count enough to safely remove my spleen. First they had to find out for certain that my bone marrow was actually producing platelets. Thankfully, the painful test proved there was no problem with production.

Then it was a matter of trying to keep my platelets intact once sent out into the bloodstream. That was to prove the most difficult challenge. They first tried suppressing my immune system with high doses of Prednisone, but that had no effect on the platelet count after 10 days. Then they ordered the more expensive intravenous gammaglobulin therapy as a last resort, but that produced no change either. It was agonizing to wait, morning after morning, after my early wake-up for a blood draw, for the news that was always the same-no change. I would then have to call my family to let them know, day after day.

My husband and I had been house hunting in the East Bay when this happened, so of course, everything had to be put on hold. I had no idea whether I had any future, but I was too afraid to say that out loud. We agreed he should call the realtor and stop the process, but we didn't really acknowledge the possibility that there would be no future house hunting.

After two weeks of no change in the platelet count, the decision was made to go ahead with the splenectomy. It was assumed my platelet count was not going to respond the any of the usual treatments, so the surgery was scheduled with my count still at "zero". I was sent home to wait - I'd been taking up a hospital bed far longer than was necessary, given my lack of response to treatment and the fact that I felt perfectly fine the entire time.

The surgeon met with me to discuss the surgery. He seemed competent, but it was clear he had never done surgery on someone with no platelets. He assured me he would have an adequate supply on hand to transfuse during surgery as needed. Little did I know at the time that a generous personal commitment from so many would make that possible!

The knowledge that there would be a supply of platelets let me concentrate my fear on whether or not the splenectomy would work. There were hints from the doctors that this surgery didn't always stop the autoimmune attack, and when it didn't, there were fewer options. I knew it was possible that I would have a drastically shortened life that might have to be lived in the proverbial bubble. The research I did in the hospital medical library indicated that people who responded to the prednisone and gammaglobulin therapies had a higher chance of recovery after splenectomy. Neither of those therapies had worked for me.

The happy ending is that it worked. Three weeks from the first symptoms, my devoted husband, daughter and son sent me off to the OR with words of love and encouragement. All of us admitted we were scared. None of us knew how it would turn out. But the spleen was the culprit and when removed, my platelet count came back up to a healthy, normal level and has stayed there ever since. The splenectomy ended the autoimmune attack as swiftly as it began.

As I write this, I am grateful for a life given back. And though you no longer can take my blood at the American Red Cross, I am thrilled to have found a way to give back. I have volunteered to call regular donors and help set up their next Apheresis appointment. Amazingly, people regularly commit to two-hour donation appointments as often as every two weeks! I can't tell you what it means to me all these years later to find this program and, in some small way, help sustain the supply of platelets for others whose lives depend on them.