ITP does not discrimate when it strikes its next victim. It affects the young and old, rich and poor all over the world. Dealing with this blood disorder is no easy task. The fear and frustration of not knowing where the roller coaster will take us next can be daunting.

This blog is for ITPers to express thoughts, feelings and lessons learned during their ride. Send your post to greta799@yahoo.com. We want to hear from you.

Thursday, October 11, 2012

Be Positive!!!

Keith Hart has a magical way of adding humor and good cheer in conversations we have in our Facebook groups.
His positive attitude makes him a wonderful role model for all ITPers.
Here is his story.....


New Years Eve of ’03, I woke up with red spots on my hands. As the day went on, I noticed more and more spots on my hands and arms. I was able to stay awake to ring in the New Year, but felt unusually fatigued. Getting ready for bed, I noticed more red spots on my feet and some dark spots in my mouth. Not thinking it would be too serious, and being too tired to do anything about it anyways, I went to sleep. I woke up a few hours later very nauseous and vomiting blood. Trying to get the taste of blood out of my mouth, I brushed my teeth, only to make my gums bleed. By this time, I realized that this was getting more serious. But I didn’t want to wake anyone up to take me to the emergency room. And I was just so tired that I just went back to sleep.

The next morning, I was covered with red spots, and the spots in my mouth grew to about an inch in diameter; including one on my tongue. Happy New Year to me!! My mother was staying with us for New Year’s, and she had seen those same spots over 25 years earlier on my brother. With a look of horror on her face she said, “It’s ITP”. At the age of 12, my brother was diagnosed with ITP. After spending 3 months with critically low platelets his ITP went away just as quickly as it appeared. We never saw anything like it again, until now.

So off to the emergency room I went. My platelet count was below 10k (normal range: 150k to 450k). I found out that the red spots were petechiae. They sent me home, telling me to be very careful about… everything. I was to set up an appointment with my regular doctor. And if I had any more bleeding, I was to return to the ER immediately.

The day of my appointment (about a week later), I had blood in my urine and was hospitalized. The next few days were spent trying to control any and all bleeding: peeing blood, bloody nose, and coughing up blood. As bag after bag of platelets were being pumped into me, my platelet counts ranged from 7k to less than 1k.

After two weeks in the hospital and several treatment options (prednisone, dexamethasone, IVIG, Vincristine, WinRho), the bleeding was under control, but the counts were still down. I was told that the next step was a splenectomy. A CT scan showed that I had several accessory spleens. Apparently, it’s not uncommon for people to have one or two accessory spleens. As a joke, I requested that the surgeon get an accurate count of my spleens because I thought I had a record and wanted to submit a claim to Guinness.

As I woke up from surgery, my hematologist told me that I may have gotten my wish. At that time, he said I had “hundreds” of spleens. He also said that the surgeon was “stressed out” during the surgery and had to step away from the operating table for a bit. The best I can tell, besides the primary spleen, there were about two dozen small spleens scattered around, and at least 80 to 100 tiny spleens in my omentum. Guinness eventually determined that they could not confirm that I was born with any of my accessory spleens, so my claim was rejected. Apparently, splenosis clusters like this have been documented in accident victims whose spleens have ruptured. Splenic tissue can revascularize if it ends up somewhere it can attach and feed.

Within hours after my splenectomy, my counts started to climb. Three days later, I was at 420k. Another two weeks later, I was at 989k. Eventually, my counts settled back down to around 450k and stayed there for two and a half years.

Then one morning, after a couple years of blissful remission… I saw petechiae on my feet. The rollercoaster continued…

But like my blood type (B+), I choose to “Be Positive”.



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