I’ve Got What????

Bron Hatton is one tough Aussie! Both she and her son have ITP but they are not letting it get the best of them....

I was diagnosed with ITP in early 1998. I had been having heavy periods and felt really flat, so I thought I was anaemic so went to Docs for some bloods at 10.00 am one morning and went home. By 12.00 pm, my mother and doctor both had started banging on the door of my flat telling me I had to go to hospital as soon as possible. I had a platelet count less than 1000. Hmm, okay, freak me out folks. When I arrived, there had been a horrific accident on the highway with 5 people killed and a couple of kids needing air lifting. So I was put on a bed to the side, told they had to check but it could be leukemia and left me for 6 hours. A very anxious night indeed thinking I was going to die.

Next morning, after all the drama had settled and they got to examine me was when we noticed all the patechiae (I get dry skin so had put the dots down to that), then of course inside the mouth and then my nose started to bleed. I had lived the previous year in the UK and had a really bad dose of the flu that they think may have triggered it. So they did a bone marrow biopsy from my chest (the single most painful thing I have ever experienced), told me I had this thing called ITP, put me on 150mg of prednisone per day and sent me home after 3 days. Let’s see how you get on they said and for the next months it was weekly blood counts and bruises like I was in a fight with Mike Tyson.

 Never send a patient home not telling them the possible side effects of a drug ( bare in mind this was a while ago so Dr Google was just emerging and I wasn’t so computer offey at the time), I put on nearly 40 kilos, would go 72 hours without sleep, my skin was so thin nothing would heal, I grew hair like a nanny goat, I got the shakes, heart palpitations, joint aches like I was 100 years old and moods that could kill a horse with a single look.

This went on for nearly 2 years, with each taper of prednisone dropping the counts. At this point after finally being referred to a hematologist in Sydney (I am 250 km’s away), I was given IVIG for the first of 13 times over 3 years. I had crappy veins, not helped by the pred, so each time a cannula went in it was a nightmare. It got to the point that you got two goes at my arm then the anaesthetist was called to do it, no matter how good they thought they were, it was rarely successful.

I had 3 pic lines (a tube threaded up through my chest) by this point in order that the infusions would get through. I had a total of nearly 3 months in hospital over one year and ended up seeing a counsellor suffering from deep depression associated with all that goes with ITP.

My heamo team at RPA decided to try dapsone and dexamethasone as well , it just didn’t work so splenectomy was the next move. Again a far less educated me said yes, wish I hadn’t. I had the dubious honour of being filmed for the TV show RPA (medical documentary TV programme in Australia) whilst having my operation and all the pre- and post filming it involved. Picture me laying on the trolley in prep room, central line coming out of one side of my neck and a microphone on the other.  They filmed my follow up visit 4 weeks post-surgery with a count of 4000 to find it hadn’t work.  Again, watch and wait and have more IVIG when needed. NO WAY was I ever ever going back on prednisone again.

This was 2000, the same year I first met my husband Nick on line. He was in the UK .The next few years included getting the first of 3 port a caths inserted in my upper chest to make infusions easier and more IVIG to hold me until I was given my first go round with rituximab (rituxin, mabethera etc. many names it has)

 My first port broke so they had to go back in and cut out some tissue and stitch it to my breast bone, fun. The first Rituximab infusion leaked and I had quite the reaction, we soon learnt that I had to have a very slow rate of infusion and pre-treat and mid-way treat with antihistamine and panadol. Yay, it gave me 3 years remission though, so I was thrilled.

During this time I would often get infections and when having my counts checked regularly it appeared I had also developed immune neutropenia (the white cells that attack bacteria), so started to have GSCF Granulocyte colony-stimulating factor  injections which I gave to myself daily. These shots  gave me serious bone ache almost like shin splints which was my bone marrow working hard.

 I had gone from 5 days a week to 3 days a week in the childcare centre where I worked as the whole steroid thing and hospital stays just wore me out and I wasn’t coping with full time work.

 In between this time and in remission, I travelled back and forth to the UK several times to see my soon to be husband and places like Morocco, Spain and Portugal, all while spleen less, though healthy and happily in love.

 

In 2005, I had a 4 week top up of rituximab after my counts started to go downhill fast and I also planned a wedding and we got married. I ended up spending some time on my honey moon in a hospital with a low count, severe bruising, and patechiae. We had finally worked out that stress was a big trigger for me and planning a wedding with people from overseas will do that to you.

Things settled down for a while and we got on with life. Then the next Christmas, I thought I had pulled a muscle in my shoulder, unable to lift it at all, so went for an x-ray to find that a 10 cm piece of my port tube had broken off between my rib and collar bone and travelled down to within 3 cm of my heart. Rushed down to RPA with a count of 40,000, I had to have an angiogram and have it removed through my thigh under twilight sedation. Then they had to go in under local to have the other part removed  because they could simply not get a vein.:-( There went any easy access for the future.

We knew we had to wait 12 months before trying for a baby after the rituximab so we did and fell pregnant only to miscarry early on in 2006. I had more drops in my count and symptoms, but was keen to have a baby and was told to go cautiously and in 2007, I saw a Chinese herbalist to help me fall pregnant.

He was dismayed to hear I had had my spleen removed and knew just by looking at me and feeling my pulse. In his words, "Some think spleen idle organ till everything else has to do the work” My bone marrow and liver were working overtime and he had a lot of work to do in supporting my blood, but within 3 months of  drinking horrid herbal tea, I was feeling the best ever with great counts. I was pregnant. We were elated.

At 28 weeks my count was 83,000 and they started me on a low dose of prednisone much to my dismay but it didn’t help so at 32 weeks, I was sent to RPA in Sydney to the high dependency unit to have IVIG with a count of 28,000. They wanted it boosted before delivery .The pred gave me gestational diabetes so had to have that monitored introducing even more needles as well as blood counts. Imagine how divine my black and blue body looked. I felt like a junkie and people kept staring at my arms.

I was induced at 37 weeks because they thought Will was going to be huge. It didn’t work, so 4 days later with a huge team, I had an emergency ceaser (they were in a bit of a panic over the ITP thing though the heamo team were ok with it all.) It was uncomplicated and a waste of all the blood and IVIG they had on hand. Will's count was fine, I was fine but later I developed a clot in my leg and had 2 weeks in hospital. Happy girl with new beautiful baby, unhappy girl with ITP and clexane (blood thinners after surgery) injections.

Enjoying motherhood and married life, my counts were steady until 2010 when I had my next round of rituxin with a new heamo after my adored Professor had retired. I live in a country town where I had my past treatments but my new Doctor didn’t have admitting rights to the local hospital so it came to budget and politics. I did have to go to Sydney to have it this time which didn’t impress me but RPA hospital was paying so that’s where I went. One day a week over 4 weeks and it did the trick again. That was December 2010 and I have been as low as 8,000 and as high as 282,000 during this time.

I manage my own ITP so to speak. My heamo and I have a good understanding. (Although we did butt heads over n-plate as he wanted me to try this new sparkling drug because of the costs of Rituximab but I refused due to clotting issues).He has agreed in the future that because Rituximab is successful and pretty much the only thing that works that I can have it again.

We treat reactively, not proactively. I have a count every 3 months because I also have neutropenia so we watch the cycle. If I get a few bruises or patechiae on my abdomen then I watch for a week. If I get any wet patechiae (i.e. blisters in mouth) then I get a count done. I call the lab direct or bless, Ian my pathologist will call and say, "Bron your numbers aren’t great today. I can see a bit of a down turn you may want to check in." I can bounce around from 8,000 to 240,000 in one week so we don’t jump on treatment, and after all these years, I am kind of glad. I just don’t balk at the numbers anymore and you soon learn that each machine reads a little differently and what’s on the film might be different as well.

In May 2011, my husband and I decided to start our own computer business. I was working part time at my job in a child care centre and Will was growing fast. My hubby was feeling ill for a few weeks in August and was tested for Celiac and Chrons disease. It wasn’t that. By the end of September he had been diagnosed with Duodenal adenocarcinoma at age 38. He died in the January 2012, leaving me devastated and alone with Will, then 3.

In June 2012, Will was diagnosed with Autism  which we had inkling had been coming and he had been attending early intervention but otherwise was a very healthy little boy.

In late July, after a day at day care, I put Will in the bath only to find his little legs covered with more than the usual bruises and patechiae all over him. I put back on his clothes and took his straight to emergency. My heart sank,  I knew what is was. Over the next 2 weeks he was admitted and monitored, his count going back up to 53,000 then dropping again and being admitted again with a nose bleed. He was given Tranexamic acid (to stop the bleeding) He ended up throwing up blood so we were transferred by ambulance  to Sydney Children’s hospital. Will had had a mild cold a few weeks before and I had been struck down with the flu. It was such a torment,  I was so ill, my mum had to go with Will in the ambulance as riding in the back made me ever more ill. Finally arriving and him still bleeding, I was a mess. Bless, he was just plain exhausted and had a terrible colour. Imagine my torment thinking I had done this to him, I had handed down this awful disease and made my baby so sick. We stayed for 4 days and he had his first round of IVIG and more Tranexamic acid. We came home with a count of 64,000 and all was fine for the next 12 months, phew. Maybe he was going to be lucky and it was just an acute case.

Despite the stress and my counts down to 14,000 with some other symptoms, this year the rituximab has held its own. Thank god really because in late September 2013, Wills counts dropped to 2000. Again the same symptoms but this time his count stayed low for 2 weeks and he bled on and off but they wanted to watch and wait.  He ended up with a severe nose bleed of 12 hours so we were transferred back to Sydney, more Tranexamic acid and a week in Westmead with 2 infusions of IVIG.

It has been hard to try and back off  on Wills ITP because it is handled so differently in children, so much of what I knew or would have expected treatment wise doesn’t fly with him. There was talk of cauterizing vessels in his nose at one point and doing a bone marrow biopsy whilst he was under ga. In the end they didn’t do bone marrow but they do feel there may be a bigger immune picture in our family. They shrug their shoulders and say it is a watch and wait and they trust me to do just that...watch and bring him in if I am worried. He now has a medical alert arm band and all his emergency plans are in place for preschool and day care and for primary school next year.

My dear old haematologist was a Professor at RPA (Royal Prince Alfred Hospital) and had been involved for a lot of years with ITP research. He was always the calmest and easiest to talk to person I had met, not to mention a gorgeous Scottish accent.

He always maintained that it was the symptoms not the count that mattered and that the numbers could often cause far more stress than was required, so that’s pretty much how we treated and how I went about with life.

I have learnt that each and every person I have met with ITP presents slightly differently, reacts to meds differently and is handled differently. They call it idiopathic. I call it idiotic myself.

We have a team for me and a team for Will.  I really trust them and know I can challenge and ask questions of them and feel comfortable this way. They know I read a lot (perhaps too much sometimes). They are always willing to listen to what I do and don’t want and know that I am a very big advocate for my son. I am blessed with an amazing family and close friends and I have learnt to say yes please to offers of any help which can sometimes be hard to do. So we just get on with living life the best we can and deal with the ITP bumps along the way.

Advice I would give to folks new to this thing called ITP is be informed. Ask questions and find a medical team that you feel comfortable with. We are all different, there is not a single person who will be dealt with in the same way. So don’t freak out if somebody else says you should be doing this or that, or is horrified by your response, and don’t be shocked by their treatment either. Try not to focus on all the negative stuff that you read about what you can’t do, eat , drink, smell, etc etc. Focus on life and get on with living it.

Hello Everyone! My name is Erica and I have ITP. I've had ITP for 26 years. 

My parents took me to the hospital because my nose was bleeding and I was bruised from head to toe. The doctors had told my parents that I had a rare blood disorder. At the time the doctors didn't know how to treat it. As life went on, I would experience flare ups, some minor, others major. I was never allowed to play sports or do any kind of physical activity. Playing with my brothers and sisters was limited because they were very active. Sometimes all I could do was watch from a window.

As I got older into my teen years I had an episode where my platelet count dropped to three...yeah not three thousand but three. Doctors immediately wanted to remove my spleen (apparently that was the “cure”). My dad refused as he thought there would be a better way. After meeting with numerous doctors he finally found someone who would listen. Her name was Dr. Goldberg, and she started me on prednisone and IVIG. I was in the hospital for two weeks. My platelet count would go up and down but eventually stabilized.

As a child with ITP, I went through a lot of teasing because I had the "moon face". I learned how to laugh it off and move on but more importantly, this is where I formed my relationship with God. For the next few years, I would experience a couple of flare ups but nothing major. At that time I had an excellent Hematologist who kept up with my platelet count.

I later on became a preschool teacher (one of my dreams), but I kept getting sick because of the germs and viruses that was going around. One day, I was outside with my students and my nose began bleeding. My first thought was that I had another drop in my platelet count, so I was pretty scared. That day, I was walking home because I lived around the corner from my job. My husband happened to be on his way home and saw me walking. He described my walk like as if I was about to pass out. But I told him I was okay.

Later in the night as I was getting ready for bed, I looked at my legs and saw they were covered in bruises. I immediately called my husband in the room and said we have to go to the hospital. We went to the hospital and doctors ran some tests. I overheard some of the nurses talking and I heard, "do you want me to tell her or do you want to tell her." I started crying right away because I knew my platelet count was lower then I thought. One nurse came in and held my hand and said, “I don't know how you survived the day.” Confused, I didn't know what to say. She continued to tell me what my platelet count was.

One.

So I had to quit my job (a job I loved) as a teacher and my husband gave me the option of not working altogether. He felt that it was more important for me to be as healthy as possible. He knew that it would be difficult for us financially, but he told me that he would figure it all out. Thankfully, there wasn't that much to figure out.

Now I am 30 and haven't had an episode since. I am always checking and I get my blood checked periodically. Though my hematologist told me I would have this for the rest of my life and it is something I am going to have to keep my eye on, I try to stay positive. I started working out, eating healthy and taking my vitamins. I didn't want to spend a lot of time on the couch so I started my own photography business where I have control over my schedule. I also spend a lot of time with my son who is my little hero (ever since I had him my count has been wonderful).

I must say I owe everything to God because He gives me strength. He gave me my husband and my son, who are my support. He has shown me that I may have this disease but I am not defined by it. ITP does not define me, and I jump at any opportunity to tell others the same.

Stay positive...keep smiling...and I am sending hugs to you all. God Bless.

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. 

It's Movie Day

Thanks to Arnold Schwartz for this picture

I want to apologize for not posting anything for the past couple of weeks. I am back up to speed now but I do need some help.

For the folks new to this blog, we want to hear your ITP story. If you look through the archives, there are some great stories submitted by ITPers. Please add yours to it.  

Also, if you see articles that would be of interest to the blog viewers, send me a link.  
Email your stories or links to: greta799(at)yahoo(dot)com


Today is movie day.....

Keith Hart has produced a video that relates his ITP story. His sense of humor in doing a parody of the song, You've Lost That Loving Feeling  makes the viewer laugh, and also think about our own battles with ITP. Keith made the video to raise awareness of ITP and he did an excellent job of showing what this blood disorder can do to its victims. Take a look:
http://www.youtube.com/watch?v=j0VagCjU1IQ 

The members of the Facebook group, ITP and ME had a brainstorming session one day and came up with a wonderful idea! Under the leadership of Elaine Twohig Odriscoll the group made a video about ITP. The idea behind this project was to spread the word about this terrible blood disorder to the whole world.

The video features members of the ITP and ME group and sends out a message that should make everyone think about ITP. Many of you have seen this already but it is worth a second look.

Take a look ... http://www.youtube.com/watch?v=IK5slMK3_Pg&feature=youtu.be..So

Several videos from PDSA, stories from ITPers and other information aboutITP.

 http://www.youtube.com/user/PDSAorg

Today's question of the week comes from Stephanie Oquinn.

What is the BEST advice you have ever given/received about ITP?

And on the flip side...

What is the WORST advice you have ever given/received about ITP?

Please leave your answer as a comment....

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