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 30, 2012

Zane's Story

           Ronda Green is sharing the story of her young son, Zane with us today. In the picture to the left, the youngster jumped off his bunk bed and hit the frame of his brother's bed. That led to his first ambulance ride and CAT scan. Zane has had a rough road with ITP but he still has a beautiful smile on his face...

        Zane was born May 10, 2007, in Lawrence, Kansas. Thinking he was a just a normal active 2 ½ year old, we thought nothing of his bruising.  In November of 2009 after noticing bruising on his legs he was taken to the doctor, and had a CBC done. 

            The next day I (Ronda) received a phone call from the doctor and was told Zane needed to be taken to the Cotton O'Neil Cancer Center to be seen by a specialist because his platelets were critical at 12,000.  A normal range is 120,000 to 400,000.  Dr. Jakica Tancabelic, M.D. diagnosed Zane with Idiopathic Thrombocytopenic Purpura (ITP).   The symptoms of ITP are similar to the symptoms of other diseases that can cause platelet counts to drop.  ITP symptoms can include, small red dots on the skin caused by broken blood vessels (petechiae), purple spots on the skin (purpura), large bruises, especially on the arms and legs, resulting from seemingly minor bumps (ecchymosis) and bleeding from the gums (gingival bleeding). If a person with ITP has very low platelet counts, it is possible to have internal bleeding or, in rare cases, bleeding in the brain. 

Zane's first stay in the hospital for
IVIG and steroid treatment.

         He was sent directly to Stormount Vail for intravenous immunoglobulin (IVIG) treatment.  That was the first of many 3 day stays at the hospital.  The first day consisted of the IVIG treatment and his first shot of IV steroids, very harsh and very hard on his little body.  The second and third day in the hospital was to watch for dehydration, and the 2nd and 3rd shot of IV steroids.  This picture was the harsh reality that he may never be able to be a “normal boy”.

            After several IVIG treatments, Zane's body quit responding to the IVIG.  Therefore we decided to use the predisone treatment.  After 9 months of predisone, Dr. T (as we call her) decided it was time to take more proactive step.  In November of 2010, Dr. T sent Zane to a specialist to consult for a splenectomy, which is a treatment as well for Chronic ITP. One of the spleen functions is to remove old red blood cells. In most patients with ITP, it is the main site of platelet destruction.  In chronic ITP, surgery to remove the spleen is an option if the platelet count remains too low or doesn't respond to treatment. Only about 10 per cent of children with acute ITP have the operation.  The surgeon said that Zane had a spleen and mini-spleens, therefore we were excited this would “cure” him!  Zane also has to  take a lifelong antibiotic to prevent infections.  Zane came through the surgery with flying colors, but after a week his platelets went back down.

            In May of 2011, Dr. T thought it might be a good idea to get his tonisles removed because of infection.  Well, the surgeon took out infected tonsiles and the night of his surgery we had to rush him to the ER because his throat was swelling shut.  He spent 3 days in the hospital for a simple tonsillectomy. 

            Since May of 2011 we have tried to keep Zane out of the hospital and continue bi-weekly blood draws.  If Zane gets a simple cold or infection his platelets drop, which caused him another hospital stay in February, which consisted of IVIG and steroids.  This instance Zane's gums started bleeding, which is not a good sign for ITP patients.  It is kind of like a few months ago when Zane bit his tongue and it bleed for 24 hours.  His platelets were 87,000 when he left the hospital and were back down to 20,000 one week later.  

          Dr. T has now determined that since Zane cannot stay out of the “critical range” that we should consider the treatment “Nplate” (  Nplate® is a man-made protein medicine used to treat low blood platelet counts in adults with chronic immune thrombocytopenia (ITP), when certain other medicines, or surgery to remove your spleen, have not worked well enough.   We have to wait 30-days to see what the insurance company is going to say about the Nplate treatment, because of the cost.  We have been told that the Nplate treatment will run approximately $3,000 a week.  The Nplate treatment requires weekly CBC and the Nplate injection for an unknown amount of time, it all depends on Zane and his reaction to it.

Zane's biggest dream right now is to play baseball, he talks about it everyday, but the only way Dr. T will let him play is for his platelets to be above 50,000. 
Pure happiness.... Zane's platelets rose high enough to go for a ride
with his brother, Wyatt.
What a couragous kid! I'm looking forward to seeing Zane on TV playing professional baseball.
Greta :)

Thursday, August 23, 2012

You may die from this, but don't worry, it's harmless - Part II


   This is the second part of Arnold Schwartz's ITP roller coaster ride. If you did not catch part one, just scroll down to last week's post.


Chapter II

I continued the rollercoaster ride of cbc's, but no treatment even after moving here to Florida in 2000. I met,and married my love. A true Florida cracker girl in Martha. A no frills, no nonsense country girl with a heart of gold, and a temper to boot. When she met my grandmother (from Moira,County Down,Ireland), Grandma whispered in my ear," She's a good Irish girl." That was all I needed to hear.:) Grandma approved. But Martha like my best friend, didn't approve of doctors. She held strong to her family's beliefs.
      After seeing my first hematologist here, he recommended spleenectomy asap. Gave me the prednisone prescription to bump up my platelets, for surgery. Confusion continued as he told me I had a disease that could kill me.When I told him I never received treatment, he told me,"That's ok.It isn't serious. Acne is more serious then ITP." I shook my head and replied, "But You just said it's deadly."
      "That's right it is, but no worse then acne. Don't worry bout ITP,"he replied. Confused I said," So I can just walk out that door cause it ain't serious?" He got mad, and said," You are a damn fool if you think you can walk around untreated with this deadly disease,you will die from this untreated." I walked out utterly confused...Maybe Martha's family was right about the medical establishment...

In 2005 my employers health insurance changed, and I was required to get a once a year check up at the least. My new pcp was an amazing woman from Texas. She was shocked I wasn't under the care of a hematologist. Two dreadful cbc's later, she held my hands, and I saw tears in her eye's. "If you where my brother, I would drive you right now to the hematologists. You have a serious deadly disease, Arnold. You need medication." My people pleasing kicked in and I went to see yet another hematologist.

I spent the next 3 years riding the familiar roller coaster, of up and down cbc's. Random nosebleeds,bruises, and petechia. My treatments would start, if my next test was lower. But when the next test came, I was back over 50K. This doctor would tell me never to treat until later in life. That the steroids damaged the liver. The spleenectomies rarely worked. And the IVIG was too costly to my employer. Still confused, I rode the roller coaster ride. Until 2009,when my hero and best friend became a victim to cancer.

My mum was diagnosed with stage 4 brain, lung and colon cancer in Nov 08. A spot was found on her lungs back in 07, but she refused to go forward, or tell anyone....In 09 she passed away (I could write an entire book on this part...but I am not ready to go there...) My platelets average began to fall to 17-30K. My oncologist, amped up the tests to weekly, but still forbid treatment, telling me he had patients with counts under 10K, that he will not treat. I assumed the low counts where due to my mum's passing, and would rebound. But they never did. Maybe I never got over the guilt of leaving home, and breaking her heart? I still have family to this day, remind me of her broken heart. Was I to blame for her death, like I was for my dad's drinking? Maybe I deserved all this because of the hurt I caused them?

In late 2010, I began to have bad headaches. Really bad ones. Dizziness at times. My pcp doctor felt it was from my high blood pressure, that I was fighting for years.(just like dad). But he ordered a MRI, just to be sure. The MRI did find cysts, and polyps in the front nasal cavities. Very close to a brain membrane, which he said are benign. But the MRI did find evidence of a brain bleed in the back of my skull. Sometime during 2010, I bleed there. "But Arnold,don't worry about it." I replied, "But that's how my father died..." After being told it was just a coincidence, I drove home taking 2 hours, wondering what to do...Confused...

My oncologist moved to a new office in 2011. Oddly enough his views on treatment have changed. The wait and see attitude, was gone. Replaced with treatment options, including the new N-Plate drug I had brought up 2 years ago, but was shot down as too risky. Showed him the MRI results,and he looked at me and made me cry, "Arnold you have fought this for too long on your own. It's time you get some help." I didn't bawl, but years of sitting in these offices alone, walking home alone, being scared alone, made tears stream..." Of course his pretty nurse comes in, and I go into my clown routine for them all. It's what I do best I guess.

When my counts flirted with 20K, he applied for N-plate, but my employer refused. Only Prednisone, ivig, and splenectomy would be covered if proven. My doctor was furious at my employer. He ordered Prednisone for me after negotiating with me for a short term trial. For the first time in my 16 year journey I would join the Prednisone alumni. I was relieved and scared outta my mind at the prospect, of finally taking the fight to the invisible opponent inside me.

I quickly discovered all the rumors of Prednisone to be true, the incredible rush of energy, the insomnia. I only got 2 hours sleep in 3 days, but was still wired all day at work. Never yawned once. Hunger pains tormented me the entire time. Massive headaches. My blood pressure was through the roof. My home testing machine broke the day I got a 195/115 reading. However my fight with blood pressure, gave me the wisdom to up my potassium intake, to fend off the sodium retention qualities Prednisone is famous for. I ate more bananas, apples, grapes and almonds. That helped to keep the Blood Pressure scare at bay.

The incredible joy was amazing when after the first week, my platelet counts rose to 159,000!!!!! I was sooo overjoyed, I hugged the medical assistants, nurses, doctor, and anyone else in the office. I asked the doctor if I could ride horse, (A dream of mine to do, but not allowed cause of the ITP risk). He said if I get another decent count, I could, as well as ride the roller coaster rides with Martha again. I was on a unbelievable high...until my next week of tests.
      My counts crashed to 50K, as the ITP flexed it's muscles. I was crushed, and confused. My doctor still ranted about my employer. He really wanted to try N-plate on me. I was slowly weaned off the Prednisone, as he said he doubted it would work, if my ITP was that strong. He would reapply for N-plate. I walked out the door in the comfortable confused state I knew so well...

What I discovered along the way, was that I was never really alone. When I laid on the stretcher, for the bone marrow biopsy, for the first time in many years I prayed. I prayed to my heavenly creator. I didn't pray for a cure for me. I prayed for him to look after my family, if this turned out bad. I began to pray more for my family then later friends I knew who where hurting. I began to have a very personal, relationship with my creator. Yes 99% of the time Martha will not go with me. I respect her views. Yes, none of my online support group is there in the waiting room with me physically. But my heavenly creator is. I don't feel alone when I remember that.

I have had an incredible opportunity to be touched by people with ITP along the way. In the early days there was no internet in my home town. Only in late '99, did internet cafes pop up. That is where I discovered ITPPEOPLE.COM. It was an incredible moving feeling to see other people talk about ITP. If it weren't for Joan Young, and her relentless effort to get going, I think my battle would be alot different. Through the forums, I met hero's of all ages. Casey Grant is a hero to me, always will be. I met Pamela Ford, who lobbied hard for N-Plate trials, after her son battled his much stronger ITP for years. I had the privilege of meeting Pamela and her family the day before I had to leave to see my mum before she passed. An amazing lady.

During my dance with Prednisone, I was invited to a special ITP group on facebook. Say what you will about Facebook, but it has changed everything about the way I face this journey. I have met so many that are worse off then me. Some on steroids long term. Some on experimental drugs. Some having thier spleens removed. This all puts things into perspective for me. When I think about feeling sorry for myself, I think of those around me worse off. My creator gave me the ability to look around. I do, and it helps.

I have met many amazing fellow ITPers here. Linda, who from day one is like an aunt to me. Dale, who grew up in the same part of town as me!! Though he went to Thom Collegiate...Yuck!!
Elaine who like my Grandma comes from a beautiful island...She reminds me sooo much of Grandma's wit,and wisdom:):) Jan, Tom and Hap make me laugh on days I feel like crying. I know I have missed many, and I know to some this is silly. But your unending understanding of a absolutely Idiopathic disease/disorder/condition is so comforting.

Chapter III

I'm just getting my second wind. Someone ring the bell. It's time for round 3!!
May GOD bless you and yours for reading this.

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....

Thursday, August 9, 2012

Is it the ITP or A-Fib?

Lisa Cassella has 3 daughters, 2 grandkids, a dog, a cat, rides a motorcycle and lives in Middletown CT. She was diagnosed with ITP in February, 2012. Lisa works with special needs teens (autism & asperger's syndrome), has a cracked sense of humor and is a bit of a hockey fanatic (go Bruins!).  Her favorite quote: "Courage does not always roar, sometimes it is the little voice at the end of the day that says "I will try again tomorrow."

My name is Lisa and I live in central CT.  I’m a 42-year-old mom of three daughters and grandma to a beautiful 2 year old boy and a gorgeous 11 month old girl.

 I have ITP and Atrial Fibrillation.   The A-Fib has been an issue for the past couple of years and I was put on heart meds and a blood thinner.  On the morning of February 24, 2012, I woke up with a weird “rash” on my lower legs and feet.  It wasn’t raised or itchy but I had red “spots” all over me.  I made an appointment with my GP to find out what was going on.  I had to see someone different because my regular doc wasn’t in that day.  By the time I was seen, the “rash” had spread to my hands and forearms. 

The doctor I saw argued with me at first, telling me that it was an allergic reaction to fish.  I told him, “I don’t eat fish and I’m like a 3 year-old if I get some in my mouth – I spit it right out!  It is not a fish allergy!”  He really did continue on with the allergy thing until he finally gave in and said “Fine!  I’ll order a Lyme test and bloodwork – will that make you happy?” 

 I did the bloodwork and waited 4 hours for a phone call – meanwhile the “rash” was still spreading and I was starting to panic.  I called the office and was told they didn’t have the results and that I should call Monday for an appointment with my regular doctor.  Three hours later I received a phone call from the on-call doctor.  “Ummmm Ms. Cassella?  We need you to come to the emergency room immediately.  Your bloodwork results show a platelet count of less than 1.  By the way, don’t bump anything, especially your head, on your way in.” 

That was the start of a terrifying road.  The scary part of ITP is the Idiopathic – is it Latin for “We have no idea where this came from”?  I was given four bags of platelets during my eight-day hospital stay.  I received multiple infusions and massive doses of steroids.  I was bleeding from everywhere (and I mean everywhere!) but no doctor was willing to come anywhere near me for diagnosis until my platelets were above 1000.  It was determined that I was severely anemic, elevated liver levels and all my numbers were askew.  I had a number of related gastric issues including H-Pylori and an ulcer.

That was the start of my journey of ITP and A-Fib.  It is an awkward combination to treat.  The treatment for ITP is to increase my platelets so I can clot if needed.  The treatment for A-Fib is to thin the blood so I don’t clot and have a stroke.  I have blood tests every ten days or so.  More if I find a lot of bruises or petechiae.  My platelet counts have been hovering at the bottom of the normal range once I’ve weaned off the steroids and I have my fingers crossed that I will be one of the lucky ones who don’t have to struggle with constantly tanking numbers. 

It has been almost 6 months and I am trying to be optimistic.  The drawbacks are that I am constantly exhausted.  I’ve packed on 30 pounds with the help of the steroids and am just too tired at the end of the day to do anything about them.  My daughters don’t understand that I can’t do the things I used to.  My friends don’t understand why I don’t go out.  My co-workers assume that if I’m at my desk, all is well.  How many times have I heard “But you don’t look sick!”?

Is it the ITP or A-Fib?  Could be both, can’t find a cure for either

Thursday, August 2, 2012

Caroline's ITP Story

Caroline Burkat Hall knows first hand what it is like to deal with pain every day.

Along with ITP, she has other medical issues that will never go away. But that does not stop her...

My name is Caroline. I live in CT. My ITP has been long-term (almost 32 years) but in those 32 years, I've had far less issues than most people. I guess I would be considered to have a mild case, and I'm happy to.
I found out I had ITP when I arrived at the hospital in labor on Sept. 14, 1980. Since I was scheduled for a c-section (although this was not my scheduled date), blood was drawn. The OB GYN who happened to be on that Sunday was the high-risk doctor in the practice. His first thought was that the hospital lab had made a mistake with the count so tests were done again and again, each time lower than the previous ones. I got platelets through the Red Cross and proceeded to have my oldest son who arrived safely.
I continued to have a low count but didn't need treatment. I went on to have 2 more sons in 1984 and 1986 without a problem, having a course of Prednisone, basically the only treatment then (besides splenectomy), at the end of each pregnancy (even though son #3 arrived 4 weeks early). My counts for the next 18 years were done yearly at my OB GYN annual visits and averaged in the 70-80,000 range. I never had a treatment, I kept my spleen.
In 2004, on my 50th birthday, I discovered I had a target rash on my back and headed to my regular doctor for a Lyme Disease test, which was negative but my platelets were quite low so she sent me to a hematologist she had consulted with. By the time I saw him, maybe a week later, my count was back to where it usually is. I continued to see the hematologist regularly, no problems. I managed, between 2003 and 2007, to have 3 knee arthroscopies, no treatment needed beforehand. In 2008, I had one more arthroscopy and my right knee partially replaced. Still no treatments! In 2010, I had my left knee totally replaced, still no treatment.
In March, 2011, I arrived at the hospital to have my partial knee replacement switched to a total knee and my count was lower than expected, so the choice of anesthesia was changed from spinal to general and I received platelets during the surgery. The following day my count was lower (in the 40s from the 69 it had been on surgery day, which was lower than the 104,000 it was a week before for my pre-op) so my hematologist was consulted. He put me on a short course of Prednisone which brought up the count. 12 days later, I was completely off of it. My counts were higher for a couple of months, but now they're back to the 80,000 range where they usually are.
That course of Prednisone was the 1st treatment I had since 1986, and that one had only been done because I was pregnant. So I still have ITP. It's there. It affects my other medical choices, like choices of medicines. Having bad arthritis is not something easy when you have ITP, but I've managed. My hematologist allows me an Nsaid, as it's a quality of life issue for me.
In October and December, 2011, I had 2 more surgeries, a foot surgery to stop a lingering case of plantar fasciitis and a knee arthroscopy to get out scar tissue around the knee that was replaced in 2010. Both of these issues caused long term pain-in addition to the pain of getting over the March 2011 revision of my knee. I had a lot of pain issues, basically, for about 2 years. Probably as a result of this, I was diagnosed with fibromyalgia in February, 2012. “Lucky” for me that I don’t have most of the issues associated with this disease, but I do have the pain issues, and again ITP has to be considered when dealing with pain medication. Since it is something that manifests itself as pain, it is yet another thing that I have to figure out how to treat without affecting my ITP. So it leaves me with more limited choices for pain relief.
In general, all the pain issues I have -the arthritis I have in my hips, shoulders, back, and what is left in my knees-yes even though a TKR removes your natural knee, there is always a little bit of arthritis left behind there)  and fibromyalgia have affected me a lot more than my ITP, although the ITP is much more medically complicated and difficult.