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!!!