I hope everyone had a wonderful Christmas!

We are coming up on a new year now and my Christmas wish is for everyone to have love, good health, happiness and lots of platelets in 2013!

What is your Christmas wish? 

Comment below and let us know. If you do not have a google account, you can comment as anonymous. Thank you everyone for supporting our ITP blog and remember you are more than welcome to send a guest post any time you want!

Please share your Christmas wish....

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".

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....

Ros Bryan came up with our question for this week. She posted this in one of the ITP support groups on Facebook and got some very interesting responses...

 When you see your doc/specialist, do you listen to them and let them make the call or do you have ideas of your own, that you want followed, (so long as it is of no danger).  Opinions anyone???

  

 Here are some of the replies she received:

1. Keep that up! and be bossy. Polite but not reverent. Being your own advocate is the most important thing to be, you are the boss of you, ITP or not. And if your doctor doesn't like it, they can kiss your behind. Personally, I always come with a list of questions, observations about my symptoms, and when he recommends a medication I tell him not prescribe it until I get all of the information about it and then I'll approve it. I learned my lesson the hard way by taking prednisone without looking it up first. My innocence was gone fast!

My doctor LOVES it. his nurses hate it because it's quicker for them to just prescribe it, but they can kiss my @ss too!

2. At the start I used to listen because I was scared and knew nothing ..lol..In saying that I haven't been to my hemo in nearly a year! If my count is ever low enough for treatment, I will not be taken pred! so she can think of something else..other than that! I just listen..and agree and leave ..But I have no problem in asking..WHY is this what your giving me ..etc etc.

3.We are all guinea pigs. Most of our doctors don't have more than a few ITP patients and they are all different, respond to different meds, are symptomatic at different levels. Mostly I think it is a cooperative effort. The doctor has ideas. I have ideas. When necessary, we come up with a new plan.

4. I agree wholeheartedly that's it's a cooperative effort and input should come from both sides. You're both working together for a common solution that will enhance your quality of life. You're paying for medical knowledge and advice, and in order for that advice to be effective in your specific situation, the doctor needs to have your input

5. I am feeling like I need to be more bossy now. I just listen to the dr and do whatever she says. But now she is sending me to the neuro because of the fatigue. And I have already been there for it last time and they did an emg and there is nothing wrong. We thought it was just from the pred but now I have been off it since January. My count from Thursday is 53K. At this point she is just waiting for it to bottom out before I even go back to see her.

What do you think...Do you let the doctor make all the decisions or do you voice your ideas and suggestions? If so does you doctor listen?

Please leave a comment below and let us know what you think...

What Do You Think II

Anthony Heard came up with our ITP question of the week...

Despite what your doctor or specialist may have said WHAT DO YOU THINK MAY HAVE BEEN THE CAUSE OF YOUR ITP, WHAT DO YOU THINK MAY HAVE TRIGGERED IT ? 

Anthony commented, "I would just be interested to hear what other ITP folk think. I have my own theory about why my ITP started but my specialist says no. For the record I think my ITP started as a reaction I believe my immune system had to a bereavement (that is what I think but who knows, it's as good a theory as any). Would be interested to hear what other folk think.

Give us your thoughts by leaving a comment about this question. 

Greta Burroughs

I think mine was triggered by stress. My parents were both undergoing chemotherapy and I lived too far away to help them. At the same time, my husband had three stents implanted around his heart resulting in his aviation career coming to an end. I was worried sick, hyper and lost a bunch of weight. After a year of self-induced stress, I was diagnosed with ITP. 

How about you? What do you think triggered your ITP?

TO I.T.P. AND BEYOND

Ros and her daughter Calley in Perth.

Ros Bryan lives in Australia. She has had her ups and downs with ITP but support from her ITP friends and her family has kept her strong through it all. Here is her story.

Hi everyone, you are about to get a warts and all story from me, in fact, honestly I don’t even know if now is a good time to write it.  For all of you that have ITP, or know someone with it, you will know it can be a default line in your life. Right now for some reason, probably because it’s coming up to the one year anniversary, of the most dreadful time of my life, I’m going through a really big downer. This is where living in Australia, is not ideal, lol, because right now I’d kill for a hug from one of my ITP friends.

My story began maybe late Oct, early Nov 2011, I noticed I had a rash on my stomach. Being the laid back person I am, I didn't really care. I figured it may be washing powder, fleas from our animal’s, heat rash, there was a million things I put it down to. I did promise myself next time I went to the doctor I would ask. Meanwhile I was also spitting up and blowing blood from my nose, lol, still it didn't bother me.  A couple of weeks later when I did see the Doc, he immediately gave me a referral to a lung specialist, thinking maybe I had lung cancer.  I forgot about a rash, until I was on the way out, so I then ran back in to show him, he put it down to viral. So I was none the wiser, lung cancer did concern me, but not overly.

 

A couple of days later, the rash appeared on the back of my hands, this did freak me out. I decided to go to Mum’s doc, to get a second opinion. He immediately sent me for a blood test. This all happened on a Friday, since I had not seen him for goodness knows how long, he didn't have my contact details.  Being a Friday night about 7 pm we were just about to walk out the door to my daughter’s netball. I had a phone call from my Mum, the doc had contacted her, because he couldn't get me, to tell me to get to hospital immediately, I only had 2000 platelets. I remember telling her sure, I’ll go after netball, that’s when mum had to relay the message if I didn't get there immediately I may die, oh yeah, and don’t fall over or bump your head on the way!! 

I think my legs gave out from under me, and my head certainly spun, as I was hysterically   crying so much I couldn't see.  My son took my daughter to netball, and myself, my hubby, and Mum went to hospital.  I knew it must've been bad, no doc, ever rings at 7 pm over here.  A little detail I do remember is the nurse shoving, and I mean shoving a canula in, while coughing all over me, I was a bit calmer by then, but  besides babies, I had never been in hospital before, and I was certainly not staying there this time!! LOL, or so I thought. After me giving them a lecture about how I was going home, so hurry up and fix me, the Doc, had to tell me if I walked out that door now I would die (one of my greatest fears), so rest assured I wasn't going anywhere, Mum was with me, trying to small talk, gee, I was horrid, telling her to shut up etc. I was in over night before meeting a Hemo the next day, who told me I needed a transfusion because I had ITP. After asking questions, I still had no idea what it was. That day over 6 hours I had a hemoglobin transfusion, (I think, see I still don’t know)!!! My platelets came up very slowly and I was released about 5 days later, with 2700 platelets, and a 2 page brochure, about the blood disorder. One page, was actually pictures, that’s how well informed I was!!! I was a nightmare for my hubby, poor thing.

I had to go back for an outpatient 2 weeks later. I was on 130 mg of steroids so my platelets had gone up. I also not wanting to whinge mentioned to my doc that my arm I had the transfusion in  was still really sore, probably nothing, and I wasn't worried. She insisted on getting it checked, but forgot to give me a form for an ultrasound. Meh, I didn't care, I was sure it was nothing, but she posted one out, and told me to go. For that I went to a different closer hospital. Of course I had a blood clot in my arm, superficial, so it should be okay but it seemed every time I went to hospital I was taken into an emergency room and given more bad news, and was booked in too see a doctor there. That’s where the memory of the Nurse came back to me. I reported that to the doctor, I have never seen one so angry. Well I didn't make it because the blood clot had moved to my lungs. A PE man, I couldn't catch a break. 

You know when you go to a public hosp and report in, and they chuck you on a bed and rip off your clothing, that something is really wrong!! So I had to stay in the hospital for a couple of nights observation, as the Cat Scan had shown a lesion on my lungs. They had to be wary in case it was cancer!! I was a freaking mess, by this time. Home from hospital though, cry enough and they’ll let you go!! They started me on a needle called Clexane, a Warfarin type drug, but couldn't actually give me warfarin itself in case I needed a biopsy, and of course I would probably bleed out. So for about 6 weeks I was on needles given by nurses at home 2 times a day, a great service we are blessed with. I couldn't sleep in my bed, I was frightened to moved off the lounge, I love my daughter with all my heart, but didn't want her cuddles, I had just lost the plot!!

Anyway, now I can cut it short, the lesion came down in size with every fortnightly cat scan, so they were confident it was only a clot, not the dreaded “C” word. However my doc, told me he would continue to pray for me, man that totally freaked me out. I couldn't at the time see it as a nice gesture to me. It meant I had to be dying.

Eventually after 6 months I am off the warfarin, however I still have to have another cat scan, that I am putting off until I go back to the hemo on Nov 12, so I will arrange it then. I am being weaned off steroids, I think this is my 3^rd time. Of course, then I crash and go back on them. Thanks to all you out there, I am aware of different meds and treatments. Short term I have had no trouble with steroids, except extra sweating, and not being able to see 3 feet in front of me. I was told by my Hemo that steroids cause a thin watery lining over your pupils and basically seeing is really hard, and it is. I do know from previous experience it will go away though. 

I'm certainly going to inquire about the other drugs and treatments though, I think steroids is just the easy option. He must dread me coming, with my list of questions, that makes me sound really clever and knowledgeable.  Of course they are just stolen from all of you, but it keeps him on his toes. I do share care with my doctor though, because mine is fairly standard !! I’m hoping this time will be THE time, that it works, and ITP just disappears, I really don’t want it anymore.

One thing that I do know for absolute certainty, that without my ITP GROUP, that I accidentally found, I would be nowhere. Further, I have gained so much knowledge, love in abundance, and friends that will last forever. I'd love to name you, but you know who you are!!!  My hope is to start something like this in Australia. Without my group, I wouldn't have had the confidence or support I need to be even able to think that. I don’t have a rash, I don’t bruise, I just don’t have platelets, so I guess really it doesn't or shouldn't effect my life the way I let it. I don’t all the time, just sometimes like now!! 

Somewhere in between this, we have moved state for my husbands job, I know absolutely no one in our new State, but it’s kinda cool. I don’t have to meet someone and say, "Hi I’m Ros, and I have ITP." I have 3 children and one has gone back to our old state, because he is at the end of schooling and the curriculum is just too different between states. He is happy and living with my parent’s. I try to tell myself its just like boarding school, but just thinking about him not being here makes me cry, I need him, lol. My hubby has been fab, taking me to my appointments etc, but truthfully I think he may be sick of hearing about it.  I think maybe I am suffering a little from PTSD, maybe, but I will cruise through it,(reading what I've just written, I guess I'm entitled though). Well that is my plan, but I'm not silly. I will get help if I need it. Like I mentioned earlier though, I really would give my right teeth, to have a hug and cuddle with Greta right now. xxx

Ros, here's a big hug from me and all the other ITPers reading your story. Thanks for sharing!!

What Do You Think?

For the past several months, we have had posts written by ITPers telling his/her experiences with ITP.

This week is going to be different....

Below is a question that I'd like to have everyone comment on. Just click the comment icon and tell us what you think.


How does ITP affect your relationships with your family and friends? Have you discovered that some of the people in your life have "disappeared" or have they been supportive and try to understand?

Do you have a question you want addressed? Please leave it in the comments. Thanks for supporting our blog!

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 https://www.facebook.com/groups/504238456262511/?ref=ts&fref=ts

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!

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

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”.

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?

PLATELET POWER!!!! 

 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!!!

How My Body Tried to Kill Me

This article is from the Feeling Fit supplement in the August 9 edition of the Charlotte Sun newspaper published in Port Charlotte, Florida.

The article was found by Tom Schilling's sister who lives in that community. She passed it on to him and he passed it to me. Bob Massey graciously gave his permission to share his story with all of you.

ITP is everywhere and it is great to see information being passed along to raise awareness....

A blood disorder started as a nosebleed – and almost ended in death

By BOB MASSEY

Feeling Fit Correspondent

       Three years ago, for reasons I (or the doctors) could not fathom, my body tried to kill itself. Not intentionally, mind you – but I came very close to being dead all the same.

       Here’s how it could have went down: Sunday morning. My then-10-year-old boy wakes up to spend another father-son day with dad. What he finds is me, unconscious or – more likely – dead, lying in a pool of blood.

       And it started with a nosebleed.

Seeing red

       I didn’t think much of it when I blew my nose into a tissue and noticed some blood. After all, it wasn’t running or dripping. But as the morning progressed, it was getting thicker, which turned out to be from blood drying on this inside of my nostrils.

       At lunch time, I happened to glance at the back of my hand, only to see a red striated rash, under the skin. My son, Patrick (who even then wanted to be a neurologist and often corrects me on medical points) was worried. He told me a clot could be causing my symptoms, and was no longer enjoying our day together. He wanted me to go to a hospital. For goodness’ sake, I reasoned, it’s a nosebleed and a rash. How bad could it be?

       I was about to find out.

When blood doesn’t count

       It took a fair amount of convincing to get me to the emergency room at Charlotte Regional Medical Center in Punta Gorda. It’s a good thing I went when I did. The staff got hold of infectious disease specialist Dr. Mark Asperilla – who raced to the ER when he heard the results of my blood work.

       The platelets in human blood are what allow it to clot. A normal platelet count is 150,000 to 400,000. Mine was 3,000. What I had mistaken for a rash was actually a series of tiny bruises called petechiae, caused by blood leaking from my capillaries.

       I was slowly bleeding to death.

       Asperilla later confessed that when he realized what my platelet count was that Saturday night, he was doubtful I would live. He said few people in that condition actually make it.

       I was supposed to be given transfusions of platelets – five units all together – but the hospital didn’t have any.  Some were sent from Orlando, which only had three. It took another day to receive the final two.

       The question Asperilla needed to answer was: Was my bone marrow failing to produce platelets, or were they being produced but destroyed before they could function?

       But he had already suspected it was the latter. He had actually diagnosed the illness immediately, but waited for test results to make it official.

       It’s called ITP. (More completely, it’s idiopathic thrombocytopenic purpura – which is why I went right for the acronym.) The name means an abnormally low platelet count (thrombocytopenia) marked by bruising (purpura) due to an unknown cause (idiopathy).

       There is little information about ITP because it’s still such a mystery – although there is a push for more research in the United States and in the United Kingdom, since the disease can affect children. Fortunately, it was mine alone, and can’t be passed from one person to another.

The treatment roller coaster

       Asperilla called in a hematologist and oncologist, Dr. Antonio Gabarda, who prescribed a bone marrow aspiration, in which a 2mm cylinder of bone is extracted and examined. It is rumored to be one of the most painful procedures you can have, and I won’t argue.

       As it turned out, my spleen was destroying my platelets – treating them as foreign invaders and sending antibodies with express instructions to annihilate them.

       True to its idiopathic nature, the cause – how I got ITP in the first place – is something the physicians were never able to figure out. The usual suspects were being an alcoholic or an illegal drug user, or suffering some kind of body trauma (such as would occur in a car wreck). I failed in all of those. That left only two other possibilities: a virus – or cancer.

       Now 28,000 platelets strong, Gabarda put me on a regimen of steroids, which were supposed to bond with the platelets to protect them. Except the next day’s count had gone down again to 24,000 platelets.

       Not only that, the meds shot my blood sugar sky high, making me semi-diabetic. I was getting my finger pricked for a blood glucose test every hour for two days, then before every meal. Another doctor put me on medication for blood pressure – which had been on the high end of normal before going into the hospital – in order to keep me from losing my vision.

       I was beginning to feel that whatever cosmic warranty I had on my body was beginning to run out.

       There was good news, however: Tests for cancer came back negative. The best Asperilla could figure is the ITP was triggered by a virus. That was his best guess, anyway.

A costly cure

       Short of having my spleen removed (which was the next step), Gabarda prescribed a medication called WinRho. I had a dose and a half over the course of two days. For about 10 minutes after the first dose, I had a reaction – violent chills and teeth-jarring shaking as well as radiating aches. But that was nothing compared to my reaction to the price of the medication: $8,000 a dose.

       But my platelet count went up to 26,000 – so the WinRho did the trick.

       I had been admitted on Saturday and was discharged on Thursday. Things could only get better. Or so I thought.

       My first post-hospital blood test was glorious – a platelet count of 260,000! The original plan was to wean me off the steroids in two weeks, but Asperilla decided to keep me on it for another two months. It puffed up my cheeks and caused to live as if I were diabetic: blood glucose tests, insulin shots if necessary, 2,000-calorie diet, the works. I also had to watch out for illness, since the steroids were suppressing my immune system, making me vulnerable to a host of problems. If I developed an infection, for instance, my body would probably not have responded in a predictable manner. It might have bypassed warning signs such as a fever, and I wouldn’t know I was even sick until I was really sick.

       As it turned out, Asperilla’s decision to keep me on steroids was a wise one. A blood test taken two weeks after my discharge showed a platelet count of 134,000 – slightly below normal, though not dangerous. Unless it became normal, the spleen removal strategy was still on the table.

       Eventually, it did – my blood has remained normal, and the symptoms never returned. And I’m grateful to Asperilla and Gabarda for saving my life, not to mention the wonderful care I received at the hands of the other medical professionals who attended to me.

       Perhaps one day we’ll understand more about it. As a near-victim myself, I’d like to know.

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.

September is ITP Awareness Month

September is ITP Awareness Month. Many of the members of the ITP and Me support group are truly in the spirit of showing off our purple for this month.

What can you do to help spread awareness? 

These suggestions are from PDSA website. (Platelet Disorder Support Association.) http://www.pdsa.org

• Write a letter to your congress person. A template is provided here.

• Contact your local media to be interviewed about ITP. A press release is provided here.

• Distribute PDSA Brochures to doctors' offices, pharmacies, hospitals, libraries.

• Attend a local support group meeting – bring a family member or friend. 
  See a list of support groups and meeting dates by clicking here.

• Participate in our 3rd National Walk/Run: Pump it up for Platelets ~ for a world free of ITP.
  See a list of participating sites by clicking here.

• Organize a walk or other fundraising event. For ideas, check out our “50 Ways to Fundraise”.

• Contact local civic clubs and offer to speak about your personal experience with ITP.

• Coordinate a display at a health fair, store, or hospital.

• Ask your city government to publicly acknowledge ITP Awareness MonthSM.

• Share information about ITP Awareness MonthSM with your contacts on Facebook, Twitter and other online sites.

• Download the ITP Awareness Ribbon and share on your pages or make your profile picture.

• Join PDSA or give a gift membership.  More information can be found by clicking here.

• Make a donation.

PDSA has done so much for ITP awareness, research and recognition. They worked very hard to get ITP Awareness Month recognized.

Their website has invaluable information for ITPers, caregivers and anyone who wants to know what ITP is. 

Thank you PDSA for all you have done and continue to do for us!!