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 We want to hear from you.

Thursday, September 27, 2012

How My Body Tried to Kill Me

This article is from the Feeling Fit supplement in the August 9 edition of the Charlotte Sun newspaper published in Port Charlotte, Florida.

The article was found by Tom Schilling's sister who lives in that community. She passed it on to him and he passed it to me. Bob Massey graciously gave his permission to share his story with all of you.

ITP is everywhere and it is great to see information being passed along to raise awareness....

A blood disorder started as a nosebleed – and almost ended in death

Feeling Fit Correspondent

       Three years ago, for reasons I (or the doctors) could not fathom, my body tried to kill itself. Not intentionally, mind you – but I came very close to being dead all the same.
       Here’s how it could have went down: Sunday morning. My then-10-year-old boy wakes up to spend another father-son day with dad. What he finds is me, unconscious or – more likely – dead, lying in a pool of blood.
       And it started with a nosebleed.

Seeing red
       I didn’t think much of it when I blew my nose into a tissue and noticed some blood. After all, it wasn’t running or dripping. But as the morning progressed, it was getting thicker, which turned out to be from blood drying on this inside of my nostrils.
       At lunch time, I happened to glance at the back of my hand, only to see a red striated rash, under the skin. My son, Patrick (who even then wanted to be a neurologist and often corrects me on medical points) was worried. He told me a clot could be causing my symptoms, and was no longer enjoying our day together. He wanted me to go to a hospital. For goodness’ sake, I reasoned, it’s a nosebleed and a rash. How bad could it be?
       I was about to find out.

When blood doesn’t count
       It took a fair amount of convincing to get me to the emergency room at Charlotte Regional Medical Center in Punta Gorda. It’s a good thing I went when I did. The staff got hold of infectious disease specialist Dr. Mark Asperilla – who raced to the ER when he heard the results of my blood work.
       The platelets in human blood are what allow it to clot. A normal platelet count is 150,000 to 400,000. Mine was 3,000. What I had mistaken for a rash was actually a series of tiny bruises called petechiae, caused by blood leaking from my capillaries.
       I was slowly bleeding to death.
       Asperilla later confessed that when he realized what my platelet count was that Saturday night, he was doubtful I would live. He said few people in that condition actually make it.
       I was supposed to be given transfusions of platelets – five units all together – but the hospital didn’t have any.  Some were sent from Orlando, which only had three. It took another day to receive the final two.
       The question Asperilla needed to answer was: Was my bone marrow failing to produce platelets, or were they being produced but destroyed before they could function?
       But he had already suspected it was the latter. He had actually diagnosed the illness immediately, but waited for test results to make it official.
       It’s called ITP. (More completely, it’s idiopathic thrombocytopenic purpura – which is why I went right for the acronym.) The name means an abnormally low platelet count (thrombocytopenia) marked by bruising (purpura) due to an unknown cause (idiopathy).
       There is little information about ITP because it’s still such a mystery – although there is a push for more research in the United States and in the United Kingdom, since the disease can affect children. Fortunately, it was mine alone, and can’t be passed from one person to another.

The treatment roller coaster
       Asperilla called in a hematologist and oncologist, Dr. Antonio Gabarda, who prescribed a bone marrow aspiration, in which a 2mm cylinder of bone is extracted and examined. It is rumored to be one of the most painful procedures you can have, and I won’t argue.
       As it turned out, my spleen was destroying my platelets – treating them as foreign invaders and sending antibodies with express instructions to annihilate them.
       True to its idiopathic nature, the cause – how I got ITP in the first place – is something the physicians were never able to figure out. The usual suspects were being an alcoholic or an illegal drug user, or suffering some kind of body trauma (such as would occur in a car wreck). I failed in all of those. That left only two other possibilities: a virus – or cancer.
       Now 28,000 platelets strong, Gabarda put me on a regimen of steroids, which were supposed to bond with the platelets to protect them. Except the next day’s count had gone down again to 24,000 platelets.
       Not only that, the meds shot my blood sugar sky high, making me semi-diabetic. I was getting my finger pricked for a blood glucose test every hour for two days, then before every meal. Another doctor put me on medication for blood pressure – which had been on the high end of normal before going into the hospital – in order to keep me from losing my vision.
       I was beginning to feel that whatever cosmic warranty I had on my body was beginning to run out.
       There was good news, however: Tests for cancer came back negative. The best Asperilla could figure is the ITP was triggered by a virus. That was his best guess, anyway.

A costly cure
       Short of having my spleen removed (which was the next step), Gabarda prescribed a medication called WinRho. I had a dose and a half over the course of two days. For about 10 minutes after the first dose, I had a reaction – violent chills and teeth-jarring shaking as well as radiating aches. But that was nothing compared to my reaction to the price of the medication: $8,000 a dose.
       But my platelet count went up to 26,000 – so the WinRho did the trick.
       I had been admitted on Saturday and was discharged on Thursday. Things could only get better. Or so I thought.
       My first post-hospital blood test was glorious – a platelet count of 260,000! The original plan was to wean me off the steroids in two weeks, but Asperilla decided to keep me on it for another two months. It puffed up my cheeks and caused to live as if I were diabetic: blood glucose tests, insulin shots if necessary, 2,000-calorie diet, the works. I also had to watch out for illness, since the steroids were suppressing my immune system, making me vulnerable to a host of problems. If I developed an infection, for instance, my body would probably not have responded in a predictable manner. It might have bypassed warning signs such as a fever, and I wouldn’t know I was even sick until I was really sick.
       As it turned out, Asperilla’s decision to keep me on steroids was a wise one. A blood test taken two weeks after my discharge showed a platelet count of 134,000 – slightly below normal, though not dangerous. Unless it became normal, the spleen removal strategy was still on the table.
       Eventually, it did – my blood has remained normal, and the symptoms never returned. And I’m grateful to Asperilla and Gabarda for saving my life, not to mention the wonderful care I received at the hands of the other medical professionals who attended to me.
       Perhaps one day we’ll understand more about it. As a near-victim myself, I’d like to know.


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