You Are Never Alone!

Do you remember how you felt when first diagnosed with ITP?

Were you afraid, confused and felt all alone?

Bobbie Scott was given the bad news when she went to the emergency room for an eye infection. A CBC showed a platelet count of 16 and she wound up staying in the hospital for three days getting IVIG infusions.

What a shock!!! I'll let Bobbie tell you the rest of the story....

After receiving the IVIG for 3 days my platelets increased to 344 on July 31st. That was the first time I went to see a hematologist in Owen Sound, and he was going to perform a bone marrow biopsy and aspiration on me, but decided against it since my platelet level was high, and in the normal range. I was told I had to get bloodwork done weekly, just to monitor my platelet level.. and they are as follows.

August 8 - 208 
August 15 - 88
August 22 - 92
August 28 - 137   

At this time, since my platelet count had decreased and had been all over the place, the hematologist decided to perform a bone marrow biopsy and aspiration on me. I was given about a 5 minutes notice about it, and I'm so thankful that my husband was with me. We were cramped into the smallest room ever, it was me, my husband, the doctor, his nurse, and the man who was collecting the specimens. The localization freezing needle was such a burning pain and since I was so nervous as well, I was crying and moaning in pain. The whole procedure was awful. The doctor tried to make me feel comfortable by talking to me about other topics but I was in pain.  My husband, Derek, held my hand the entire time, and when it was all over he nearly fainted and had to be sat down on the floor. Seeing a loved one in pain can be very upsetting, and I think that is what caused him to nearly faint. -- Thankfully , the results of the bone marrow and aspiration came back with normal results and no cancer in my bones. 

September 6 - 74
September 13 - 81
September 18 - 54   

The hematologist decided that he would now try me on prednisone. Normally it's a dosage of 1mg/kg that a person weighs, and I weigh 60 kg. However, he started me on half of the dose at 30mg prednisone for a week, and then decreasing by 5 mg each week following.

September 25 - 158
October 2 - 110
October 11 - 100 

 The hematologist decided that he wanted my platelets to stay in the normal range for multiple weeks in a row, so he increased my dosage back to 30 mg. He stated that he wanted me to take the 30 mg continuously for 3 weeks.

October 16 - 166
October 23 - 122
October 30 - 94  

Now, the hematologist has decided to increase my dosage to 50mg prednisone for 2 weeks, and then 40 mg for 2 weeks. When I went to see him on this date, I waited a total of 2.5 hours to see the doctor and only saw him for about 10 minutes. He stated that if I had come in originally with a platelet count of what I had at this time, he wouldn't have started me on prednisone. However, since my platelet count is all over the place, he needed to treat me.
 
The next day, October 31st,  I was at work when I got a phone call from the hematologist's nurse on my work phone line. She stated that she wanted to make sure I was up to date on my immunizations, especially streptococcus, haemophilus, and Neisseria, because they may perform a splenectomy on me eventually if needed. 

What a way to get news ! The hematologist did not once mention this to me when I saw him the day before! I was very upset to get news like that over the phone with no warning, and I cried in front of my boss and my co-workers. I don't want them to take my spleen. It is the one thing in my body that fights off illness, and I don't want to lose it. I said to the nurse on the phone "what if I don't want him to take it?" and the nurse said "there are plenty of people in this world walking around without a spleen". 

Yes, this may be, but I don't even know how long I was living with low platelets, and I felt FINE! I don't know when my platelets started going low. I have no idea. I'm so completely frustrated because I can't control what my blood is doing. Is there something I can do to change my diet? Exercise? I want to do everything I can to not let them take my spleen at this point in time. I'm struggling with getting advice from my sisters, and my mom, and my husband, and my dad. I just don't know what to do at this point. I've also stopped taking my birth control (since it was the only thing I was ingesting into my body that could affect my blood possibly) to see if that will help or not. 

If anyone has any advice for me, it would be greatly appreciated. My tear ducts have almost completely dried up, because there's nothing left there anymore. I just need a positive, uplifting thing to happen because I don't know if I can take reading on my bloodwork -- platelets (LO).

Since Bobbie sent me this email, she has joined an ITP support group on Facebook and has received wonderfully encouraging support from fellow ITPers. 

I was also able to connect her with Margie Doman who also lives in Owen Sound and Dale Paynter who heads a support group in that area. The amazing thing is that Bobbie works in the same office as Margie's doctor and Bobbie's mom and Margie were classmates in school!!!

Lesson learned.....No matter where you are, how you are diagnosed, or what you (don't) know about ITP.... Help is right around the corner. Maybe not in the same town but with the ITP Support Groups - you are never alone!

Samuel Lollman has to be one of the most cheerful kids around. He has had ITP since he was a wee lad but that beautiful smile never disappears from his adorable face.

His mom, Julie shared their story of bruising, hospitals, treatments and determination to live a full happy life in spite of ITP....

We jokingly refer to Samuel as our million dollar baby. Being a preemie and spending a month in ICU will earn you that title.

A year after he was born there was little sign that his life started out fierce and fighting. Cruddy ventilator lungs was the only lasting sign. Samuel was  your average 3yr old who loved life and left nothing unexplored. 

The first bruising we noticed was in 2009. I remember telling my older son that he needed to not be so rough while they are playing. ( awful, I know) It was winter and the boys had been playing in some unexpected OK. snow. Later that day he developed huge bruises across his lower back that seem to get worse and spread out by the day. I was at one point even worried the school would think we were beating our child! I still never had any alarms in my head going off and chalked it up to great outside fun and a clumsy boy. 

A couple months later, I watched Samuel lean over to pick something up and barely hit the corner of his eye. He didn't even flinch and I thought nothing of it. Moments later, I look at him and there is a huge ball on the side of his eye that is black and blue. Bleeding inside his eye and blackened the other side of his face and corner of his other eye. Then the blood looked almost like it was slowly moving down his face. I had never seen anything like it! 

Finally some alarms went off. His brother was going to pediatrician the next day for a followup and I decided I should probably take him with me and just

let him take a look at his face. Our awesome pediatrician did bloodwork just to be safe and when he came back he said that Samuel had only 5k platelets and normal was 150k and above. He then proceeded to tell us that he is at risk for inter-cranial hemorrhage and that he could not rule out leukemia. He told us to head to the hospital and that they would be waiting for us. Ugh. In my head I am thinking, ok, what is a platelet? What did they do? How did a followup appt. end up with us going to the hospital fearing for our child's future? We head home to pack a quick bag and drop off our older son.

At the hospital we waited half the day and night. They gave us a diagnoses and said they were pretty sure it was not leukemia. I've never been so relieved. Samuel began his first of what would be 30 plus infusions of IVIG. The infusion lasted 8 hrs and nasty side effects followed with fever, vomiting and migraine.  

We were given all the odds and percentages for ITP and we were hopeful as the remission rates for his age were great. Only 4% will go on to be chronic as children. 

A week later his numbers were in the 400k range and our hemoc. told us she thought he was in remission. Yeah!

Two weeks later we went for a followup. I noticed bruising coming back and after a CBC, his body had already chewed through most of the 400k platelets and was down to 60.  This became a pattern over the next year. Every two-three weeks he was in hospital getting IVIG infusions. It was definitely a lifestyle change. Weekly blood draws and missing out on fun things because he was in the danger zone. As a Mom and friend, I became the most unreliable person. We could never truly make plans at school or otherwise because we simply did not know what our week would entail. 

After a year, we realized that Samuel is part of the 4% who's ITP is chronic. We explored another treatment option called mercaptopurine . This was an oral chemotherapy  pill given  to leukemia patients as a maintenance drug. Scary, but it was shown to have good results with long remissions. It would be the first time Samuel learned how to swallow a pill and he did it like a champ. He took it at night at certain specific  times. He did not have many side effects, mostly a nauseated stomach. After 4-5 months I began researching the drug and found many disturbing facts about secondary leukemia risks while taking this drug. It was not helping his numbers and his doctor took him off. 

We began discussing splenectomy and vaccinated him and prepared. We decided on doing a bone marrow biopsy to be sure prior to surgery to make sure we were not missing anything. That was tough and glad it was done. During this time we started noticing bruising and bleeding with higher counts. I would assume he was low, take him in for labs and numbers would not match the symptoms. This began a whole series of testing putting splenectomy on hold. Aggregation testing and platelet function testing were coming back abnormal. So not only did his body fight off his platelets, the ones he did have were not functioning. Many, many tests were done for months, specialized tests sending as far as as Wisconsin with no real answers.

 

In Feb. of 2012 I was getting Samuel's bath ready and I could hear him commenting on how his pee looked funny. I turned and looked and there was a stream of dark brown. It didn't even register what it was at first. You get that familiar pit in your stomach and I knew we were in for a long night. I called our doctor and she said to head to children's and they would be waiting to admit him. This began the scramble of packing bags for the hospital and getting our son Ethan somewhere. We are good at not panicking at this point, but the unknown of "what now" is what can drive you crazy.  He was in the hospital 3 days until the bleeding stopped. He had CT scans, MRI and ultrasounds. His platelet count? 80k! Samuel for sure got everyone's attention. The bleeding was from the kidney so a nephrologist was called in. Due to the bleeding, he could not do a kidney biopsy. He did other testing for kidney function that was normal. The hematologist blamed the kidneys and the nephrologist blamed ITP. At this point we were scared that we did not have a clue at what we were dealing with nor did anyone else. 

We decided to try Rituxan. IV chemotherapy was given once a week for a month. This also unfortunately did not nothing for his counts and was a very long month and rebuilding of his immune system and side effects.  I had already been researching, trying to find a platelet specialist. Boston kept coming up and before long we were headed there for a second opinion.  They were super excited to meet Samuel and the first conversation was spent discussing our approval on putting Samuel on their new study for testing. Although very insightful, our options were still limited. Both Boston and his local doctor are concerned with the possibility that there is something underlying going on that has not surfaced even though he has been tested for everything under the sun. He is an awesome doctor who I am thankful we were lead to. He has discussed Samuel's case with rooms full of oncologist / hematologist around the world who met at oncology conferences for their opinions. How awesome is that! 

So now we are in somewhat of a holding pattern. We have had to stop using the IVIG because of the chemical induced meningitis he was having. The most recent treatment he had is Winrho. It was nothing short of a nightmare. He was a very

sick little man and we had some scary moments with this treatment. 

This brings us to our current date. We will be going to consult about starting NPlate. There is positive information regarding this drug. Although I am very skeptical to keep experimenting with these new drugs. It was shortly after stopping the 6mp that he began the weird bleeding symptoms. Coincidence? I am ready to pull out his spleen and be finished but his doctors are still worried there are other issues. There is actually a test that can help determine whether it is spleen or liver that destroys the platelets. Of course this test is only offered outside of the U.S.  Why? Well there are two thoughts:

1. Not enough need for the test and the isotope that is used in the test is very hard to get and the lab has to be certified to get it which is very expensive and hard. This was concluded from a Red Cross research facility that used to perform the test but can no longer because of the isotope. We had an interesting conversation for sure. 

2. The test just is not a good tool. 

That brings us up to date! 

Who is Samuel? He is not the poor 6yr old that has ITP. He is the most happiest, energetic, kindhearted child. He takes every needle and treatment in stride and can be sick as a dog and wake up smiling. We are not dramatic in speaking with him about his disease and after three years he does not really know any different. We find something fun out of every hospital stay and doctor visit. ITP  is not who he is and to speak to and see Samuel, you would not even know he is sick and that's our goal everyday. God gives his toughest battles to his strongest soldiers and Samuel is a survivor and a fighter. 

This week's question is again stolen...er....borrowed from one of the ITP groups I am in.

We often discuss all the negative aspects of having a chronic disease but developing a positive attitude can be beneficial to our mental, psychological and physical health.

Today, I would like for everyone to list the positives of having ITP.

Some of the responses in the support group were:
     -- If I get Lupus, cancer or any other medical condition, it will be diagnosed earlier.

    -- I have met some wonderful people through medical services.

   -- Strengthen faith.

  -- Make me slow down and take care of my health.

  -- I've learned to live life to the fullest since I can't change things.

What are your thoughts? Has anything positive come out of having ITP. Please leave a comment. If you do not have a Google account, use the drop down box and use "Anonymous".

A Voice for ITPers

Dale Paynter is our special guest today. He has been very instrumental in getting the word out about ITP.

Dale started an ITP Support Group for the Toronto area in Canada and has done a number of interviews with the local media. He has also participated in the PDSA conferences here in the USA.

Hats off to this wonderful man and all the great work  he has done for all ITPers.

I guess it is my chance to add my mild little story to Greta’s wonderful blog – should be doing something while we are sitting here at the Hospital getting IVIg. Those who know me agree I can ramble on, so you might need to grab a drink and/or a snack to get through this….sorry.

My low platelet condition was discovered in the spring 2010 in an annual company medical (70 at the time).  My numbers continued to drop into the 30s and I was referred to a hematologist that same fall. We tried Dexamethasone to see if that would raise my numbers to no avail. She then conducted bone marrow tests and specifically found I have a protein clone that is attacking my platelets.  It is a bit unsettling when the first time you hear of a rare condition, you are told you have it. A great deal of time was spent scouring the internet to find absolutely everything about ITP.

Before my referral, I did a lot of thinking about a specific cause of my numbers. Looking back at old medical records showed 400 in 2007 and 150 in 2009. I had a bruising from a hockey injury about the same time as my 2010 medical – was this a cause or a symptom?  I had a large weight loss three years ago; did this trigger something?  I was a chronic worrier - is ITP stress induced? I have done a lot of youth volunteering with some tasks requiring long, late hours at certain times of year – did I burn myself out?   I may never know if it is one thing or a combination of things; many of us never will.

My numbers were somewhat stable in the 30 range without treatment, but I was concerned about an upcoming winter golf vacation in South Carolina with my 20 year old son. To be in another country (even the United States) with a different medical system was a concern should something happen. My hematologist suggested that we try IVIg to see how that would work, even short term. This was covered here in Canada, so we gave it a try. Four days put me back over 350 – did we the find the silver bullet first time? As we all know, IVIg is only temporary, but still we had something that worked if we needed.  That took so much off of my mind.

My haematologist has suggested that I would be a good candidate for a splenectomy, but that talk has been less recently.  I visited a friend who is a local naturopath about a year ago - we found a number of food allergies and also diagnosed Candida.  We successfully conducted several treatments to eliminate these, but this did not improve my platelet levels.

Over the past 20 months, I have had CBCs every two to three weeks, and IVIg for two mornings every four to six weeks when my numbers have been below 30 (lowest test ever 15). I have zero side effects from the treatments, and get really strange looks from all of the nurses when I say I am heading back to work.  Sometimes I wonder about trying some of the other treatments, but many are not available, approved or covered here in Canada.  We will be working on changing those kind of things up over time.

There are some things that we can obviously no longer do (play hockey) and we need to pay attention to tasks at work and home, but we are still active. I am volunteering with kids hockey (managing…off the ice), biking in the summer and curling in the winter (it is Canada).  I own golf clubs, but they aren’t very good.

-----------------------------

Back when I was first diagnosed two years ago, my hematologist gave me a small brochure that has ultimately changed everything and given me direction now that my sons are grown and off to university.  Many of you know of my deepening interest and involvement with the Platelet Disorder Support Association in the US.  Without being on a soapbox here, I can’t say enough about how PDSA and the people there have helped many of us with ITP.  My first conference in Boston in 2011 was magic. It was just so great to for the first time meet and talk with people live who have the same condition. 

I now facilitate one of two PDSA support groups in Canada, drawing attendees from all over the Greater Toronto Area. I have completed television, video and newspaper interviews in Canada and the US, as well as had the opportunity to speak at the 2012 Conference in Denver. My sights are set on establishing a ‘new’ regional fundraising event, and getting charitable donation status here in Canada.

Social networking has been a godsend in learning how many others really have this, and how other people have been treated and how they have responded, favourably or unfavourably.  I can’t imagine how difficult it would have been to be alone with this. I can’t say thank you enough to my worldwide ITP family.

Once again this is not about me. I have been able to manage all of this; I am fortunate that I have few (if any) of the other physical symptoms or medication requirements of a great number of the people I have met worldwide who have ITP.  It is SO important to get our word out, so our numbers know they are anything but alone.

My wife and I consider it lucky to have found this when we did and that I am being looked after before it could have been much worse or even too late. It has corrected some priorities.  

See you in Washington in July.

DP

Rachel Pagano Chahir is a very familiar name to many folks. She has been a voice on many of the ITP Support Groups and has helped us to see this disease through her eyes.

Rachel is also very busy spreading the word about ITP and made "GOT PLATELET HATS" to share with us. Through this endeavor, she also set us a contribution page through PDSA to raise funds during ITP Awareness Month. If you would like to contribute to this worthy cause, check out her donor page at http://pdsa.donorpages.com/HelpRachelChahirFightITP2012/

Another project under way is the 

St. Gennaro Festival BLOOD DRIVE & ITP AWARENESS

Rachel and Linda Guy McGuirl are going to have a table set up at the festival with information on ITP. 
It will be on Sunday, September 23 at St. Patrick's Basilica Youth Center, 268 Mulberry Street (between Houston and Prince) New York City.

The American Red Cross will be there for folks to donate blood. Blood is in short supply. Call 1-800-Red-Cross to make an appointment or to get information sent to you. All donors will receive free cannoli! 

Join in with the fun, food and festivities at the San Gennaro Feast, learn a little something and donate some blood while you're there too.
https://www.facebook.com/events/348196801939778/

A MESSAGE FROM RACHEL:

My name is Rachel Pagano-Chahir, I was born in Long Island to an Italian-American family and then by two years old we came back to Brooklyn where our relatives lived and we could have a real sense of neighborhood. From my early childhood I always knew I wanted to help, so I decided I was either going to become a Nun or go into medicine. I chose the later and became an RN in 1981. This was a dream come true cause I had a job that I really loved and gave me great pleasure. I found great comfort in helping others get well, understanding their conditions and being able to to heal. As I kept a very busy pace working 3 days a week 12 hour shifts, caring for a disabled husband, a mother who had cirrhosis of the liver and my father who had early dementia and raising my son, while volunteering for McDonald house foster home program & Covenant house, it wasn't unusual that at times I felt very tired and fatigued.

What surprised me the most was when in December of 2002 I was hanging my decorations for the Christmas season, when I slipped off a ladder and slid down, I didn't think much of it. Getting dressed the next morning my entire leg was black not on one spot you could see my skin, thinking I must have had bad fall then, I continued on my day. As I brushed my teeth, blood started to squirt out from the inside corner where your jaw meets, again I said what? and in a hurry I dealt it off to a period problem..Later that day at work I felt completely cold especially my hands and feet. It went on for days like this and the bruise on my leg wasn't clearing. I went my GP who was a co-worker and friend and she said, of course you are runned down, look at the schedule you keep, the fall you took, you really need to eat better and make sure you take your vitamins. Well we left it at that.

After months of me becoming a walking "poster woman for domestic abuse" because of all the bruising I finally said I think its time for a second opinion and looked to get in with a hematologist. Much to my surprise his first reaction was I think you have "ITP" but I would like to run more test and do a Bone Marrow to rule out the "L' conditions. My world and the life that I had lived changed from that day forward...I didn't get diagnosed till 2006 andstarted treatments IVIG, steroids. I had an TIA and partial loss of vision in my left eye, I was depressed, weak and fatigued. I spent most of my days laying down or sitting and could only do things for a short time. I had brain fog. 

How can this happen to me I said? I'm the one that takes care of everyone, now I'm on the other side and this wasn't my life anymore, it was an ITP life. Trying to gain some control I opted to have a spleenectomy 8/15/12 at age 52. Well after 3 months, it didn't work I'm back to being refractory. I will not give up, but if ITP is what I have to live with I am going to direct my anger, my sadness, my caring nature to spreading awareness to those that might have and don't know and to the world and doctors that need to learn and push for more research.

Thus for September ITP awareness month, my son who does graphic design and studying Architecture helped me put together ITP Awareness caps "GOT PLATELETS?" So we can spread the word and bring the nation of rare blood disorders. They are my way of giving back to PDSA & fellow ITP'ers and support groups for their unending hope, knowledge and support.

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 pdsa.org 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.

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....