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.

I Am ITP Positive!!

We all know Anthony Heard and appreciate all that he does for his fellow ITPers through the ITP Foundation in the UK. But have you heard or read about his introduction to ITP?

Here is your chance to read his fascinating story...

My adventures with ITP started on Friday July 28^th 2006. That date is etched into my memory as my life changed dramatically from that day.Probably like many other ITP sufferers I had never before had any serious illness, andcertainly nothing more than the usual wear and tear we all experience in our lives.

I had reached the ripe old age of 45 relatively unscathed.The diagnosis of ITP was a complete shock, although on reflection I had probably been suffering from the condition for about a year .  I had been reluctant to report mysterious bruises that I had been getting on my arms, legs and torso to my GP because I simply put them down to my usual clumsiness. I had no idea that they could be anything serious. At no stage have I had any other symptoms like bleeding from the nose, gums or in the bathroom.

What actually made me visit my GP on that fateful day of July 28^th was that I had been feeling very tired, run down and lethargic. As soon as my GP saw the bruising on my arms and legs I could see her visible concern and she took me straight through to have a blood test.  She gave me no indication of what the problem might be but admitted that it could be serious. At 5pm she telephoned me to confirm that my platelet count was 4 and that I must report to the Royal Berkshire Hospital,  A and E without delay.

After about 4 hours of tests at A and E , ITP was diagnosed and I was prescribed 100 mg of  Prednisolone and 20 mg of Omeprazole. I was given detailed information by A and E about the possible side effects of the steroid but nothing prepared me for just how sleepless the nights would be, how hungry I would always be  and how wildly my moods would swing.

On meeting my specialist the next week I was thankful that my platelet count had responded well and was up to 75 . I was kept on a reducing steroid dosage for 3 months and told to carry on as normal. I managed to carry out my normal work duties and as I was only 1 year into a 3 year Open University BA degree, I simply carried on. The challenge of my degree and the daily routine of work took my mind away from the unpleasant side effects of the steroids. Studying helped to fill the wee small hours and was actually quite productive.

The positive response that I had to steroids saw me taken off Prednisolone by November 2006 but like so many other sufferers by February 2007 my platelet levels had fallen back to 10 . At this stage no alternative treatments were suggested and I was put back onto 60 mg of Prednisolone and 20 mg of Omeprazole .  Once again my system responded well and the vital number went up from 10 to 78 within a week  but  4 months after withdrawal of the steroid the platelet levels collapsed again.

This pattern was repeated in 2008 and 2009, so that overall I had 4 attempts at steroids, which always gave the same short term response but had no impact in solving the underlying problem. In 2008 I was introduced to Azithioprine but within 2 hours of taking a dosage of 10 mg , I was violently sick, dizzy, feverish and probably the most unwell I have ever been.  So until August 2010 my life became  3 months on Prednisolone, Omeprazole and Alendronic acid, then 4/5 months off and so on. As an added Christmas bonus in December 2009, I contracted shingles, which really has been the gift that just keeps on giving as even now I am still itching to stop itching.

In June 2010 my specialist and I agreed that we had to break the steroid cycle. By this time I had managed to understand a bit more about ITP. I had finally accepted that I would control it and it would not control me. It had to be ITP POSITIVE and not positively ITP. Anyway I was given Rituximab treatment in July 2010. The 4 treatments lasted about 6 hours each, albeit the first was 8hours. The worst part of the Rituximab treatment was having a bone marrow biopsy beforehand. I can only describe the biopsy as the most painful experience of my life.

I responded very well and very quickly to Rituximab, my platelet count has stayed over 100 ever since August 2010. The most recent count was 153 a month ago.  I have not taken any medication at all since September 2010 and I hope that I can be steroid free for a good while yet. Having said that I realise that as usual with anything ITP related, the only thing that is definite is that NOTHING IS DEFINITE.

I have come to view my ITP experience as a positive one. I would not vote for it if it were standing for election BUT I have learned so much about myself, my wonderful wife and family and the generosity of other people as a result of my illness. It has absolutely changed my life.

I am ITP positive, I have completed my BA Open University degree with it and I will continue to enjoy my life. The phrase Carry on Regardless springs to mind but perhaps it should be Carry on Platelets.

Finally my best wishes and thoughts go to all those fellow ITP sufferers who have taken the time to read my story. I am eternally grateful that my response to the treatments I have had has been positive. I can only conclude by saying.....

My name is Anthony Heard

 I am 51 years old and I am ITP POSITIVE !

Contact email Anthony@itpsupport.org.uk

TWITTER @ITPSupportAssoc or

TWITTER @AnthonyH7

I Have ITP, It Does Not Have Me

Aimee Knight posted this in the Facebook group ITP and ME. She relates how she copes with being a victim of this terrible blood disorder. Aimee granted her permission to reprint her story here in this blog.

   When I was first diagnosed with ITP, I developed a coffee habit to help with the tiredness. Well, actually it was milk and sugar with a little coffee in it. At a visit with my hematologist, I showed him a small persistent rash on my hand. He took one look and said “too much sugar” in his very strong and to the point German accent. I looked down at the cup of coffee still in my hands, how did he know? End of discussion, I cut back on the sugar and the rash went away. I did some research and reading and found that sugar can fuel an autoimmune response.

   Also recently, I read that a compound found in almonds can do the same thing to some viruses, interesting information. Since I’ve had my spleen removed, I’m almost always, fighting something. Since giving up my healthy almond habit, I seem to get better faster. I know some people can’t have any sugar because of their other health conditions. For myself, I’m a believer in “If you’re going to be bad, do it right.” I have my chocolate in moderation and steer clear of sugar free stuff. If it says dark chocolate, fair trade and organic, that’s just awesome.

   I don’t like the taste of water; I swear it has a taste. So I drink it with lemon, carbonated drinks make me feel awful. When I want something sweet I have a banana smoothie or vanilla soy milk. Chi tea with agave is really good too and smells like Christmas in a cup. I try to eat healthy 99% of the time or less. My favorite chef to follow is Jaime Oliver, his recipes are real and basic and do not taste like cardboard.
   A few years ago, a friend recommended the book John mentioned, The Power of Now. I took one thing away from it, a breathing exercise that helps me sleep better. I also tried yoga but I don’t see how people can do that at a studio and drive. I’m pretty sure if you do it right, you’re going to be relaxed and super sleepy. I gave up stressful things in life, like a mean husband. I look for joy, less stressful nightly news and more comedy. However, until I get an all expense paid trip to paradise on a prescription pad, stressful stuff is going to happen. I give myself permission to deal with it my way, a bubble bath or a good cry. It’s great to be joyful and spiritual. I think happiness is the best antioxidant. However, when you have a chronic illness, it can’t possibly be all puppies and rainbows. Some days you’ve got to spend the entire day in bed, in the dark, to feel better.
    That’s my two cents; please don’t take any of it as medical advice. If you find points that you want to research yourself, that’s great. We are all in this together but still we all have individual stories. I’m glad we have this page to share information. Personally, it makes me feel less alone in this battle.
   As for miracle cures, I quote Princess Bride, “Life is pain, highness. Anyone who tells you different is trying to sell you something.”

Celi De La Torre  They say that everything happens for a reason. ITP is certainly a curse. It has made my life a living hell. I've had days where I can't even get out of bed, days where I thought I was going to die, and days where all I could do was cry. But you know what? In a wierd, twisted way, ITP has also been a blessing. It has forced me to slow down and prioritize my life; to look at what is truly important. I have developed a greater appreciation for family and those I love (including you all of course). I take the time to enjoy the little things like I never did before, like my children's laughter, their smiles, their hugs. Joe's love for me, even when I'm at my worst. My parents for supporting me, even when they drive me crazy. It's made me realize that I need to make MYSELF a priority! Being a single mom for so long, I'd almost forgotten that there was a "me" to take care of too! I've begun eating better again (did wonders the first time around for my energy levels). I let myself dance (okay...so it's mostly in my head so far...but not for long I hope!). I'm rediscovering who I really am! So, yes, in many ways ITP sucks. Just remember, even on your worst days, sometimes blessings can come in disguises, maybe even in the disguise of a curse called ITP! Aloha and hugs to you all!