My Black Friday: Idiopathic Thrombocytopenic Purpura

ITP Idiopathic thrombocytopenic purpura personal story
That Friday, my Black Friday, was real and there was no way to deny it. I was dying.
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This is not happening to me! It’s all a dream, a nightmare. I am not in a hospital bed with IVs connected to both of my arms. A doctor did not just tell me I might have some type of hemorrhagic fever. I am not dying.

I’m going to close my eyes and transport myself back to this morning. I will not answer the phone. I’m going to ignore the message from my doctor’s office. I have enough problems to deal with without adding all the events from today to it. I’m going to go to sleep, and in the morning I’ll wake up in my own bed.

Go to sleep, Greta. Go to sleep…

What’s Happening to Me?

That Friday, my Black Friday, was real and there was no way to deny it. I was dying. My living nightmare began several weeks earlier when I finally gave in and made an appointment with a gynecologist. My period had been extremely heavy and non-stop for over a month. Something had to be done.

After four weeks of poking, prodding, scraping, and testing, the doctor didn’t know anymore than when we started. She just gave me the standard line in her patronizing tone, “You’re getting to the age when your body …”

Oh, how I wanted to say, “Forget the crap, lady. I want an answer.” Instead, I remained calm and asked, “How about some blood work? In all this time I’ve been seeing you, you’ve never ordered any labs. The fatigue, weight loss, brain fog, and unexplained bruises covering my arms and legs are classic signs of anemia. I’ve lost so much blood; I must be anemic. Don’t you agree?”

She shrugged her shoulders and snapped, “Oh well, if that’s what YOU want, I’ll order it.” What I wanted was to smack the smug sneer off her face, but I controlled myself. I was a good girl. I patiently sat and waited while she made arrangements for the lab work. Turned out, that was the smartest move that lady had made during our time together. Even though it was my idea, I’ll give the good doctor partial credit.

I received the fateful call the following morning. “Mrs. Burroughs, we just received the results from your labs. You have a platelet alert. You need to go to the hospital right now for another round of blood work. If their results confirm the low platelet count, you’ll have to go to the emergency room immediately.”

So began my Black Friday…A day I’ll remember forever. The mystery behind my excessively heavy, never-ending menstrual cycle was one step closer to being solved. My hope was that one last blood test and maybe a few magic pills would cure me. That was a bit optimistic, but miracles can happen, right? Unfortunately, reality painted a totally different picture.

Sitting and waiting is not one of my strong points, but that’s how my husband and I spent most of the day. The emergency room was packed. It took hours before we were escorted back to a little cubicle. By the time the ER doctor ran another Complete Blood Count, better known as a CBC, my platelet count was down to 2000 from the 8000 the blood work indicated earlier in the morning. (Quick note: Normal range starts at 142,000)

Next thing I knew, I was in the protective care unit with a couple of nurses hooking up IVs in both arms with tubes running who knows what into me. The bag of platelets was too frozen to drip. One of the nurses used a big syringe to manually pump the cold clumps directly into my arm. That hurt.

My room became a beehive of organized chaos – people walking in and out, whispered conversations, looks of pity from the nurses – too much to take in. I wanted to leave, but escape was impossible. I couldn’t even go to the bathroom. The pee pad under me soaked up all the blood, but needed to be changed every half hour. Every hour, my body was inspected for signs of internal or external hemorrhaging, even inside my mouth. An elderly vampire snuck in to withdraw vials and vials of blood from my arm. With all the blood she took, I was sure I’d run dry before morning!

Needless to say, I was scared, confused, and miserable. I wanted to go home. The one positive point of light helping me to maintain my sanity was my husband. He sat in a corner, out of everyone’s way. But he was there. His confident smile, a wink, a blown kiss made the experience bearable.

A year earlier, our positions had been reversed. He was the one in a hospital bed awaiting emergency heart surgery. I had rushed him to the hospital after chest pains had doubled him over. While the medical team worked on him, I sat in the corner offering him encouragement and bravely smiling while deep inside, I was afraid of losing him.

I knew what he was going through.

The room was empty, except for the two of us, when the emergency room doctor came in and informed us of his diagnosis of hemorrhagic fever. I’m glad my husband, Bob, was there. I was incapable of comprehending or communicating. He took over, answering questions and providing all the information I was incapable of doing. After that conversation, Bob started showing signs of fear. He had lived and worked in Africa and knew what hemorrhagic fever could do. He fell silent and pretended to sleep in the chair so he could avoid answering my questions.

I was alone. My thoughts ran wild. My body screamed for some restful sleep. No way. My imagination took over and images rapidly flashed before my mind’s eye. Scenes from the past haunted me – my parents, Bob, our four-legged children, and all the shoulda, coulda, woulda things left undone. I wished for a second chance to fix all the mistakes I’d made.

My night nurse, Amy, sensed my negative frame of mind and reassured me that everything was going to be all right. Her encouraging words during our hourly visits together helped me to get my head together, and I was finally able to get a few hours of sleep.

A different visitor entered my room just after sunrise. He introduced himself as a hematologist, Dr. Goldbloom, and said he had good news and not so good news. I did not have hemorrhagic fever, but I did have a blood disorder called ITP (idiopathic thrombocytopenia.) There was no cure for ITP but there were treatments, and he would work with us to get me back in shape.

That was great, but what the heck was ITP? I’d never heard of it before, and how did I get it? Dr. Goldbloom explained that ITP was an autoimmune disease. “For some unknown reason, your immune system has begun to target your platelets for destruction. That’s why you continue to bleed; you have no platelets to clot the blood. We have no idea why a person’s immune system starts targeting what it’s supposed to protect. It just does. It could be the skin, muscles, cells, tissues, or organs; your immune system happened to pick your platelets.”

Five days, five long days in the hospital before I got to go home. Bob had promised to keep me from overdoing it. Right, with 80 mg of Prednisone inside me, I was hyper and hungry. I’ve never been one to sit around and watch TV. I’ve always had to be busy and the Prednisone made my fidgeting worse than ever. Bob caught me a number of times doing things I wasn’t supposed to be doing. I couldn’t help it.

As far as food was concerned, I wasn’t just hungry, I HAD to have food. Anything, everything, I stuffed it down my throat. We made the mistake of going to an ‘all-you-can-eat’ buffet. I took full advantage of it. I consumed at least four plates filled with meats and a few veggies, and another one filled with desserts. It’s a good thing I’d lost so much weight; I was making up for all those missed meals.

For the first few weeks, things went great. My platelet count was climbing, the doctor tapered off my dosage of Prednisone, and life was getting back to normal. Then I started my period and my platelet count crashed. Every month thereafter, it was the same thing. I’d have to go back up to the mega-doses of Prednisone and then taper down until the next relapse.

It couldn’t go on like this. The ITP roller coaster was getting the best of me. The side effects from the Prednisone were terrible and intensified with each cycle. I didn’t know what was worse – the disease or the treatment. Dr. Goldbloom decided to try plan B, a splenectomy. That didn’t work. Plan C was IV infusions of Rituxan. That didn’t work either. Plan C, Decadron, and Plan D, Vincristine, went bust as well. I was stuck with the Prednisone.

By that time, my mental state was at an all-time low. I knew of no one else with this weird disease, and thought I was the only one in the world with ITP. My family and friends were wonderful. They loved and supported me through all the highs and lows, but they just didn’t get it. They didn’t understand. I felt isolated and all alone. I needed someone to talk to who was experiencing the same thing. There was no one there.

I didn’t think things could get any worse, but fate was not being very kind to me. My vision started going downhill. I mentioned it to Bob and Dr. Goldbloom, but they laughed it off as a sign of getting old. No one believed me until it got so bad, they had to believe me. An eye exam revealed I had Prednisone induced cataracts.

My job as a freelance reporter for a local newspaper was at stake. I was stubborn and kept working even though I had to write out my notes with big, fat, magic markers, and type up my articles using the biggest font on my computer. Bob had to drive me to my assignments and do the photography, but I didn’t give up.

After six months of being legally blind, I had cataract surgery. What a blessing it was to be able to see again. Life was good again, in spite of the stupid ITP. I learned a lesson from that experience, and began to accept my limitations. I may not be able to do everything I used to do before ITP, but by golly, I was going to make the best of everything I could do.

I think that was what the Fates were waiting for. Soon after, menopause saved me from the monthly relapses. My platelet count climbed into the ‘normal’ range and has remained consistently stable. I discovered social media and joined some ITP support groups on Facebook. At last, there were fellow ITPers I could talk with. I found out I was not all alone fighting this disease. Best of all, I’ve been able to help others deal with the ups and downs while trapped on the ITP roller coaster.

ITP nearly killed me. But it also opened up a new world to me. It helped me to grow into the person I am today. I still don’t like having a chronic disease, but I appreciate life so much more due to my experiences. Life is good.

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