My Rocky ITP Roller Coaster Ride

This is an article I wrote for The Platelet magazine, published by the UK ITP Foundation. I wanted to share it with my fellow ITPers. Everyone of us has a story and we would love to hear yours too.  If you wish to share your story, poetry, artwork, rants, etc, please send it to greta799@yahoo.com.

Thank you, Greta Burroughs

“But I don't feel sick. Why do I have to stay here in the hospital?” I stubbornly asked the emergency room doctor, and he replied in an exasperated voice, “Because you are one sick chick. Your platelets are down to 2000. You are going upstairs to PCU and you are going to stay there until I say you can go home. Your platelet levels are falling fast. Yesterday they were 11, this morning they were 4, and now they are 2. Something needs to be done right now.”

“What does that mean? I don't know what all those numbers mean,” I whimpered, “and why do I have all these bruises and the red dots all over my legs?”

The doctor explained, “Your platelets should be over 140 to be in the normal range. Without the platelets, your blood will not clot. The bruises and red dots, which are called petechiae, are the result of the low platelets. Your blood is actually leaking through the walls of your capillaries and up through the pores in your skin causing the red dots. With your platelets so low, you are in danger of hemorrhaging either internally or externally. It's a good thing you did not wait any longer before you came to the hospital.”

“Oh, OK” was my tremulous answer; that was the beginning of my struggle with Immune Thrombocytopenic Purpura. (Excerpt from Heartaches and Miracles)

It was a very frightening experience, being in a hospital bed with IV’s connected to both arms and a heart monitor hung around my neck. I did not feel sick or have any pain; there was nothing wrong with me. Granted, my period had lasted longer than normal and was very heavy, but my gynecologist had assured me it was nothing to worry about and the pills she gave me would get everything under control.

I should have realized it was not that simple; the terrible fatigue, bruises and petechiae were my body’s way of saying, “Hey, something’s wrong, fix me,” but I was too busy to pay any attention.

If I had known then what I know now, things would have been done a lot differently. I would not have waited until the fifth visit with my ob/gyn to ask for a blood test. Yes, I had to ask for the blood work and am glad I did or I probably would not be here now to tell my story.

My life has been dominated by the ITP roller coaster ride since being diagnosed in 2005. My world revolved around the unknown. Will my period behave this month or will I have another relapse? What do I have to do to get back to normal - splenectomy, IVIg, prednisone, decadron, rituxan, vincristine? Nothing seemed to work and the side effects from the treatments were taking their on toll on me as well; neuropathy from the vincristine, paranoia and panic attacks from the decadron, and cataracts from the prednisone.

It was an uphill fight, but through it all I had great support from my husband, family and friends. Without that support, I probably would not have maintained a positive attitude and the determination to beat ITP. I am in remission now, thanks to Mother Nature and her gift of menopause. Other than a couple of small relapses, I have been able to live a normal life for the past couple of years.

During this time, I have reflected on all that I have learned from my experience with ITP. The most important fact I learned is that I am not alone. So many people with ITP feel like they are the only ones fighting this disease. Over the past year, I have connected with other ITPers through forums and discussion groups and discovered new friends who have been through the same experiences.

There are also newly diagnosed patients who are in the same boat we were in six years ago, desperate for information and answers. It has become my mission to spread the word about ITP, to share my story and let everyone know what ITP is and what it can do to a person.

The excerpt at the top is from my book entitled Heartaches and Miracles. In that narrative I try to offer encouragement to those who are on the ITP roller coaster and let them know that remission is possible. It may take several tries but the right treatment is out there, it takes determination, patience and most of all a positive attitude. I am a firm believer that a person's attitude determines one’s wellness. In other words, if you have a positive attitude and believe you will succeed, you will. A negative attitude puts a damper on success whether it be battling an illness or in life itself.

ITP is a battle. Each person fighting this disease has to determine his/her individual plan of action with his/her hematologist. What works for one person will not have the same outcome for another. But have faith, one of these days you will hear the sweet word ‘remission’ and know you are the winner.