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, August 16, 2012

You may die from this. But don't worry about it. It's harmless.

  It's my fav moment after oncologist day.
Going to Starbucks for that chocolate
 chippy ice coffee drink:):):)

    Arnold Schwartz was diagnosed in 1996. His father died from a ITP brain bleed. He is married to a southern belle in Florida,but maintains his long distance love affair with his Saskatchewan Roughrider football team.
He is owned by a devious but lovable Siamese cat, feeds several feral cats,and wishes for world peace, and dark chocolate pancakes!

Chapter I

Questions. Questions that I ask. Questions that I answer about ITP. To me, my journey with ITP has been full of questions that never get answered it seems. I struggle with frustration, and confusion with a disease that is either harmless, or deadly. Every doctor I see, has a different take on what I have. Some tell me to treat aggressively. Some tell me to wait and see.Some tell me they don't know how to deal with it, and ask ME how I would treat. Every person I meet with ITP treats it differently. Views it differently. I am confused,and...scared at times...

For me my journey began in 1996. To that point in my life, I was healthy, physically strong. Never sick. Other then my appendix, and tonsils out, the most I had to deal with was teen acne!! But in 96, things changed. I was in my 13th year working at a department store, doing everything from unloading trucks, installing car batteries, putting kiddies bikes together, to ordering inventory,and submitting ads to local newspapers. I started to have bad stomach cramps. Really bad twisting cramps, that came outta nowhere, during the day at work. Got so bad, I went home on breaks, just to relax. Thought it was just stress. A month prior, I began to have bruises on my back, and legs waking up in the morning. Big bruises the size of a slice of bread. Little red dots(petechia), covered my feet, arms, and shoulders. Mum thought I had the measles. When the cramps started, I started to wonder if they where related to the "measles".

My mother concerned, had me see her doctor. I refused to go, as I was quite stubborn about such things medically.I was a firm believer in medical issues being an extension of emotional issues. I figured it was just my diet, or the mall food, but when blood started to show in the bathroom, thought maybe mum's advise would be wise. Went to see him. He asked me where I got my bruises from, and how long I had the "rash" that was on my shoulders. I never noticed either of them. He felt around and listened to the noises my stomach was making.Then ordered some blood work.

That's when I received "the call", at work a couple days later. The doctor wanted to see me. Sat me down and tried to explain platelets, and that mine where way below normal levels. I had no idea what a platelet was, but I would soon enough. Scared me when he said I had to see the towns hematologist asap.I didn't know what a hematologist was, let alone what platelets where! I didn't understand. "Is this cancer? What is going to happen? Did I catch it?" He didn't know. I walked home confused...

I was booked to meet the hematologist at the towns emergency room the day after my brothers wedding. Didn't tell him because I didn't want to spoil the wedding. I was fitted with an id bracelet,and given a bed in the triage ward."What the heck?"I thought. The towns hematologist came in and asked me a flurry of questions that hurt me. He asked me not if, but how much alcohol I drank. Told me, he would find alcohol on my blood work, so I should be honest. I didn't drink. Still don't. My late father was a town drunk. Everybody knew "ol Red". I am not ashamed. I am proud of his accomplishments. His reputation I assumed made it's way to this doctor, as I was raised in a small city, where EVERYONE knew what colour your underwear was!!

After the cbc, he came into the room, and looked at me shocked," You have no alcohol in your system, but your platelets are indeed dangerously low. Have you ever traveled to Japan,China?" At this point I wish I had and stayed...He then told me, he agreed with my pcp's outlook that I had ITP, but needed a bone marrow biopsy to rule out bone cancer. "Bone cancer!!" I thought. "You have got to be kidding me!! I work out every day.Muscled up. No drugs,booze,smokes. How is this possible? Was it the food? The water? The air?" Both Dale and me grew up downwind from the towns steel mill.Often the sky was was a sickly orange colour, and reeked of sulphur. When will it be cured?Is this why I had nosebleeds alot in my teens?!! I walked home scared and confused...

The bmb was the most painful thing I have ever experienced. I took a photo of my best friend, and tucked in my shirt, as I sat on the bed in the ER, the next day. When the doctor, saw me alone, he asked where my family was. Where my friends where. None came with me. So he brought in a pretty nurse, who would sit with me. He told me I needed to have someone there during the procedure. I had no idea why, but soon would, as he numbed my hip bone, but never enough as the needle pushed though the bone...The nurse would hold me, and hug me, while I screamed. I walked home with a limp, still confused...

I got the call late at night a few days later from him, while he was on call. The bmb came back negative. I indeed had ITP. No more sports. No hockey. No football. No more jogging. No heavy weight lifting. No more stress. I needed to avoid aspirin, and blood thinners. I asked him how long I would have it. He told me, "Arnold there is no cure. You will have this forever. You are going to need to be monitored monthly, You may need to go on steroids.You may need your spleen removed. You may die from this. But don't worry about it. It's harmless." When I hung up, I sat there in the dark, looking at my friends picture...scared...

I would start seeing my pcp, for monthly cbc's. If counts where low, I would go back in 2 weeks. If around 50k, I wouldn't have to go back for a couple months. But things went sour at work, when one time the office called me at work, and got my boss, instead of me. I was taken into the store manager's office, and was told, I needed to be cured in 30 days or else. That the safety of the customers was the most important thing. He assumed ITP was contagious. I never thought about that. "Was it?"

When I came home, a letter was waiting under the door from my friend. She like me, believed all medical issues where emotionally linked. She told me in the letter, that I needed to be emotionally, and mentally stronger in life. That I was weak, therefore I developed ITP. It was one of the coldest days of the year, as I stood there snow melting all over the floor, reading the letter (letter being a form of communication prior to the internet :). She no longer wanted to be a friend, until my ITP was cured. I was confused...and alone.

What hurt me the most wasn't the needles, or bmb. It was how those around me looked at me. I remember going to a friends house for dinner, and getting a plastic spoon and fork, on a paper plate, which he threw away wearing rubber gloves. I didn't feel normal anymore. I started to understand how a HIV patient must feel... And of course I got the "but you don't look sick", comments from family. And the "But you are not taking any medication, so it must not be that serious" comments. Yet here at times was my doctor calling my work place telling me, "Arnold you need to get to an ER, your platelets dropped below 30K, last test. Don't bump your head or your kidney area till you get here asap!!" I would sit in the ER confused..and alone...Then go home after the latest test would have them at 50K once again...

I remember going to the book store thinking I would find lots of ITP info, on the racks like there was for cancer, diabetes, high blood pressure, etc. I was stunned to find none. Not one magazine, not one book. I went to the local libray only to find ITP listed in a obscure medical dictionary, that really only spelled the full name, and not much else. "What did I have? Is this terminal? Can I be cured? My boss, and friend want it cured asap. What do I do? Why won't they give me something for it?"

My counts always floated around 50k. My doctor would send me to other hematologists, as he was just as confused. One day even bringing in a med journal, and telling me that's all he knows about ITP, the spelling. I asked him to write a note for me for work, saying it isn't contagious. He told me he couldn't, cause maybe it is. But he relented and wrote a note for me, as my job was on the line. This helped at work, but I felt like a leper. With a disease that could kill me yet I looked perfectly healthy, if no one saw the bruises on my legs.

Many times I would wake up to super large bruises the size of kleenex boxes. Wake up to blood stained pillows. Would go into see the doctor, who would run the cbc's, only to tell me the episodes are NOT ITP related. That you don't have symptoms with ITP. Only a coincidence that I was bruising, and bleeding. I would leave confused... Why wasn't I being treated? I eventually would slow down going to the doctor out of what my best friend said at the time, and started looking at emotional reasons for this disease. I discovered I was co-dependent. A people pleaser that put everyone ahead of me, in order to make them happy. That doing so was a emotionally draining thing to do...Because I was raised in an alcoholic family, I developed people pleasing skills. I made people laugh. I made people happy...(Haven't changed much have I???...)That being like this is a physically draining thing...

The irony of my alcoholic families history is my late father. I loved him dearly. After I was born in 67, he no longer was able to do what he loved, long haul truck driving. He had to stay in town to help look after me. Mum said, that is when he started to drink heavy. I blamed myself for his alcoholism. I still do... But the scary thing is in addition to his drinking, he also had ITP. Much, much worse then mine has ever been. Covered in bruises, and constant nosebleeds, his doctors warned him to stop the drinking. I remember hiding his booze, and paying the price when he found out. I remember going to the AA meetings with him, so he could stop, then meeting up with his buddies at the local Irish pub after. I spent more time in those pubs singing old Dubliners tunes, then most do in a lifetime... Am not proud. Am not ashamed either... He was my father..

But in 1977 his ITP got worse. Ironicly it was when he had finally stopped drinking, that his ITP got worse. He spent much of the summer and fall of 77 in the hospital getting platelet transfusions, and taking pills that made his face fat, and his blood pressure rise (prednisone I assume). Dec 19th he came home staggering, and dizzy. We thought he was drunk, but he wasn't. He was throwing up and had a huge headache. When he collapased, mum said the last thing he said was, "Take care of the boys." He was rushed to the hospital that night. We waited in the icu ward, not allowed to see him. At the age of 41 he died at 3am from a massive brain bleed. Doctors said he would have lived more, but the alcohol made his platelet counts lower. I grew up real fast that Christmas. One minute playing in the snow with my lil brother, the next making funeral arrangements, and doing mum's taxes at the age of nine. So when it hit me I had the same ITP as my father did, it hit me hard. But I swore my story would end differently.My goal at the time was to turn 42. I did in 2009.

Tune in next week for chapter two in Arnold's story....


  1. This comment has been removed by a blog administrator.

  2. you have possibly the worst doctor in the world. i was diagnosed at age 7 in '95 and could answer every single one of the questions your doctor couldn't. seriously.

  3. maybe your case wasn't as severe? sounded like regular routine. if your a dr genious tell me then why nplate does not work for my alcoholic mother at age 54? diagnosed at 49, spleen gone, second severe surgery under for way too long and they took every piece of her insides out leaving what they could no longer chase. my mother cant keep 10,000 platelets with regular n plate, ivig, platelets, prednisone. so dr, is my mother going to pass away when they take her off nplate in 2 days because they see no results?

  4. maybe your case wasn't as severe? sounded like regular routine. if your a dr genious tell me then why nplate does not work for my alcoholic mother at age 54? diagnosed at 49, spleen gone, second severe surgery under for way too long and they took every piece of her insides out leaving what they could no longer chase. my mother cant keep 10,000 platelets with regular n plate, ivig, platelets, prednisone. so dr, is my mother going to pass away when they take her off nplate in 2 days because they see no results?