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, October 25, 2012

Peace, love, and high plates!

Jay Jacinto has been through the mill yet he retains a wonderful sense of humor that makes him a joy to interact with.

Jay and his wife, Karen have had their share of ups and down with medical issues but always come out on top with a positive attitude and a willingness to help others.

Karen has started a support group for caregivers. It is an outlet for spouses with loved ones going through chronic illnesses and disease. Faith, Hope and Ribbons can be found at

Here is Jay's story...
For most of my adult life, the worst I had ever suffered was having severe asthma attacks and bronchitis, and a touch of pneumonia. Oh, and a nasty bout of chicken pox when I was 19, NINETEEN!!! 

My work history mainly surrounded doing retail sales and customer service, so stress was definitely nothing new in my line of work. I met my wife in 1993, and we corresponded for 3 years before actually meeting IRL (in real life). November of 1996, we married, and began our quest down that marriage road.

My life has had its shares of ups and downs. Building homes in Mexico, celebrating our 10 year anniversary, finding out we were expecting our 1st child (after 10 years of trying), rebuilding homes in Mississippi, discovering we were expecting our 2nd child not long after our first child was born, and going through the enlistment process with the National Guard are just a few of the great UP memories I have. The 13 stars I have tattooed on my left arm are a reminder of my life since being married in 1996.

During my enlistment process, the military doctor at MEPS told me that during the physical, I had elevated blood pressure, and asked if I had taken any protein supplements or anything prior to the physical. That was a shock to me, as I had never had any problems with my blood pressure. This was in March 2009. I went to my PCP, and he noticed my blood pressure was elevated, but passed it off and told me not to worry, it is in the OK range, so off I went. A few months later, as we were moving to Arizona, I started noticing headaches and vision problems. We passed it off as stress related to moving (which is another story in and of itself), and because the line of work I was currently doing revolved around spending 8+ hours in front of a computer monitor or 2 or 3, it was relative to eye strain and fatigue. Again we dismissed it. As we settled in Arizona, the vision problems got weirder, when I started experiencing problems with distinguishing between the color blue and green. When making the formula bottles for our youngest, my wife would remind me that I was putting the wrong color cap on the bottle (putting blue on green and vice versa). We laughed at that, and just thought that was part of the oddity with my eye strain. We made a point to go see an optometrist when we came back to California (as we had family friends we visited often). By this time, my vision suffered greatly, where it became nearly impossible to drive at night.

July 2009 was when I was initially diagnosed with ITP with counts down to 21 alongside developing kidney disease and high blood pressure/hypertension. The ER doctors could not figure out what was going on, nor explain why my body was literally shutting down. The doctors took my wife aside and told her that, in their opinion, I was not going to survive the night based on the lab work and prognosis they had in front of them. I spent 3 weeks in the hospital, going through 16 plasmapharesis treatments, and left with my counts at about 187. We rested a couple of days before trekking back to Arizona, back to our home. 

Getting back to "normal" took some time. I suffered some nerve damage from the ITP, as well as some calcium deposits in my knee and finger joints with the kidney failure. Playing with the kids was not the same, getting around with ease was not the same, as I had to walk with a cane, or when things got worse, use a wheelchair. We relatively eased back to normal life, and I even started working part time again. We thought everything was good; we knew what signs to look for with ITP and with my blood pressure under control, I was on the road to full recovery.

May 23rd, 2011 is a day of infamy for me. I was working with a social media company, and had my foot in the door to getting into the "thick" of the business. I wasn't feeling too good, but not enough to worry about, so I left that morning to meet my boss at the new office building. I straightway went to work, getting the network connections going, and connecting the computers/laptops for internet service. I felt flush and tired, but thought it was simply because of just how much energy I was spending in a room that didn't have sufficient air conditioning. We stopped around 12PM and decided to go to Subway for lunch. I felt sicker than before, even my boss noticed it, but I trudged on. I barely finished my lunch, and my head was pounding even worse. I told my boss I was done for the day, and needed to get some rest for tomorrow. So off I went to go home, but soon as I got home, I told my wife I wasn't feeling good, and thought I should go to the ER, against her better judgment.

My plate count was 18, my blood pressure was 220/140, and the ER staff was hard pressed to try and fix one thing without losing sight or control of the other. My first week in the ICU was filled with high doses of steroids, rituxan, pain meds, blood pressure meds, and countless vampire bites. I was there for 3 months, endured almost 3 dozen plasmapharesis treatments, almost as many dialysis treatments, 4 rituxan treatments, a BMB (bone marrow biopsy), and enough tests and x-rays to fund buying our own house, car, and a few luxury toys.

Here I am, 14 months in remission, and things are coasting. My plates are stable for now, my blood pressure fluctuates, but all in all, it is going good. Now, to deal with my shoulder pain, and dealing with which arm to fix first.

Peace, love, and high plates!

Friday, October 19, 2012

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.

Thursday, October 11, 2012

Be Positive!!!

Keith Hart has a magical way of adding humor and good cheer in conversations we have in our Facebook groups.
His positive attitude makes him a wonderful role model for all ITPers.
Here is his story.....

New Years Eve of ’03, I woke up with red spots on my hands. As the day went on, I noticed more and more spots on my hands and arms. I was able to stay awake to ring in the New Year, but felt unusually fatigued. Getting ready for bed, I noticed more red spots on my feet and some dark spots in my mouth. Not thinking it would be too serious, and being too tired to do anything about it anyways, I went to sleep. I woke up a few hours later very nauseous and vomiting blood. Trying to get the taste of blood out of my mouth, I brushed my teeth, only to make my gums bleed. By this time, I realized that this was getting more serious. But I didn’t want to wake anyone up to take me to the emergency room. And I was just so tired that I just went back to sleep.

The next morning, I was covered with red spots, and the spots in my mouth grew to about an inch in diameter; including one on my tongue. Happy New Year to me!! My mother was staying with us for New Year’s, and she had seen those same spots over 25 years earlier on my brother. With a look of horror on her face she said, “It’s ITP”. At the age of 12, my brother was diagnosed with ITP. After spending 3 months with critically low platelets his ITP went away just as quickly as it appeared. We never saw anything like it again, until now.

So off to the emergency room I went. My platelet count was below 10k (normal range: 150k to 450k). I found out that the red spots were petechiae. They sent me home, telling me to be very careful about… everything. I was to set up an appointment with my regular doctor. And if I had any more bleeding, I was to return to the ER immediately.

The day of my appointment (about a week later), I had blood in my urine and was hospitalized. The next few days were spent trying to control any and all bleeding: peeing blood, bloody nose, and coughing up blood. As bag after bag of platelets were being pumped into me, my platelet counts ranged from 7k to less than 1k.

After two weeks in the hospital and several treatment options (prednisone, dexamethasone, IVIG, Vincristine, WinRho), the bleeding was under control, but the counts were still down. I was told that the next step was a splenectomy. A CT scan showed that I had several accessory spleens. Apparently, it’s not uncommon for people to have one or two accessory spleens. As a joke, I requested that the surgeon get an accurate count of my spleens because I thought I had a record and wanted to submit a claim to Guinness.

As I woke up from surgery, my hematologist told me that I may have gotten my wish. At that time, he said I had “hundreds” of spleens. He also said that the surgeon was “stressed out” during the surgery and had to step away from the operating table for a bit. The best I can tell, besides the primary spleen, there were about two dozen small spleens scattered around, and at least 80 to 100 tiny spleens in my omentum. Guinness eventually determined that they could not confirm that I was born with any of my accessory spleens, so my claim was rejected. Apparently, splenosis clusters like this have been documented in accident victims whose spleens have ruptured. Splenic tissue can revascularize if it ends up somewhere it can attach and feed.

Within hours after my splenectomy, my counts started to climb. Three days later, I was at 420k. Another two weeks later, I was at 989k. Eventually, my counts settled back down to around 450k and stayed there for two and a half years.

Then one morning, after a couple years of blissful remission… I saw petechiae on my feet. The rollercoaster continued…

But like my blood type (B+), I choose to “Be Positive”.

Friday, October 5, 2012

Showing Off Our Purple Spirit

September was ITP Awareness Month

What a blast we had spreading the word about ITP and showing off our Purple Spirit on the 28th (US) and 30th (UK). But it was not limited to just the US and UK. Around the world, ITPers have shown their support in spreading the word. For example. support groups through PDSA are being set up in Canada. In Germany, there was a ITP Awareness Day and as you will see in Muhammad Tahir's picture, World Platelet Day reached all the corners of the world. Wow, what great bunch of people spreading the word!

Lynda VanderBilt is the captain of our cheer leading squad so she will take our show from here.

Give me a P.......
Give me a L.......
Give me an A.....
Give me a T........
Give me an E......
Give me a L........
Give me another E
Give me a T.........

Give me a P...O....W...E...R

What have you got?


 Amy Sellers Hudson and her football pro, Branden

 Arnold Schwartz at the Cardio

 Caroline Burkat Hall in her purple pajama top

 Dale Paynter got his whole office in on the fun

 Elaine Twohig Odriscoll is pretty in purple

 Emily McTyre wearing her favorite purple shirt and holding her favorite little boy, grandson Josh

 Genevieve Kilianek created this beautiful bow

 Grandma, Avery and Brandy DeWitt

 Hayley Shimanek's Labs Cocoa and Diesel sport purple for platelets

 Jackie Fiamengo-Sunara and Darla got dressed up too

 Jay Jacinto sporting his 'got platelets' hat

 Jenn Briggs and Sugar

 Samuel Lollman didn't need to buy a purple shirt!

 Katybeth Jimenez looks good in purple

 Linda McGuirl, purple from head to toe

 Linda Eschen even color co-ordinated the wall to match her purple spirit

 Lisa Cassella and granddaughter Sophia sporting their purple

The purple highlights look great with Margie Doman's red hair

 Jaxen Ford was supported by his whole school

 Ros Bryan, our sassy Aussie

 Muhammad Tahir is a fighter, ITP cannot stop him!

Larry Lee sporting his GOT PLATELETS bracelet from PDSA

Kim Barthels Purple Platelet Power "I have ITP, but it doesn't have me! 21 years!

There were many more of us sporting purple for platelets, sorry I could not include everyone.

Just wait til next year!!!