I’ve Got What????

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

One.

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

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

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

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

Elaine Twohig Odriscoll shared a beautiful poem she wrote in the Facebook group,
ITP and Me.

She gave me permission to post here on our blog so everyone can read and appreciate the feeling she shares.

Today I will wake up into the unknown,

Everyday's a blessing but everyday I feel alone,

I wonder what tomorrow will bring

I pray it will be good,

Will I be bruise free or will there be Blood?                  

I know I have I.T.P but what will others think,

Even though I stand so tall

I feel so ready to sink,

I'm really tired now

I think I will lie down,

But as I look in the mirror

All I see is my Hospital Gown.

The Dream is over, I'm not free as a Bird

I'm hooked to my life saver Bottle after Bottle

And this is now my Third,

I'm in my second home, now a hospital suite for me

All the people in and out as busy as can be,

But I have things to do, my home, my job, my kids,

Doesn't I.T.P know that I have no time for this?

My treatment is over and I'm drained from day to day

I will feel much better in time or so the doctors say.

I want to run around and come and go as i please,

But I.T.P has other plans and it has me on my knees.

I can pray for a cure or a magic wand if so

I can always pray for strength and let ITP go.

So if you ever see me, don't ask me how I feel

Just know my battle is very Hard and very, very Real.

It's Movie Day

Thanks to Arnold Schwartz for this picture

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

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

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


Today is movie day.....

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

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

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

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

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

 http://www.youtube.com/user/PDSAorg

2013 - What will it bring....
           More bleeding, bruising,                   treatments or remission? 

Have you come to terms with ITP? Has it become just a part of your life now and not so scary anymore or do you still worry about your platelet count? 

Can we ever come to terms with ITP? Do you have days when dealing with ITP, family, friends, work, etc. seem to overwhelm you
like it did with this person.....

It is such a harsh reality to see how our families just don't get it. They see it all....the vomiting, the headaches, all of it and yet some of them just don't understand. My sisters and brother don't even call anymore because they think all I want is money. I am expected to listen to all of their complaints and problems and pray for them but where are they now? Where are they when I need them? I think it is harder on my kids because my husband and I both are dealing with illness. The difference with my husband is his basically controlled with pills. He had the stroke because he didn't listen and yet I did nothing to get this crap and somehow I am over reacting when my teeth are bleeding or I have bruising everywhere. Both of us can't get private insurance because they don't cover ITP (unless you had prior coverage and were diagnosed while covered), so we have to rely on medicaid share of cost (you have to prove that you need medical care). I was told today that when my son turns 18 we will lose that coverage too. I have my husband telling me that I am worrying over nothing. NOTHING!!! Maybe to him it's nothing but to me my life now depends on getting these shots. I missed three weeks and went down to 19,000. I think it hurts more when your husband and children don't seem to understand. Four years of this....I think it is getting to be too much for them. I think they just want it to stop but it does not look like that is going to happen. I have faith and I pray and I push myself to believe but today, I am just having a bad day. We can't be strong 24/7/365 like everyone expects us to.

What are your thoughts? Leave a comment and let us know how you feel. Is it possible to ever come to terms with ITP?

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...

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!!

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.

Zane's Story

           Ronda Green is sharing the story of her young son, Zane with us today. In the picture to the left, the youngster jumped off his bunk bed and hit the frame of his brother's bed. That led to his first ambulance ride and CAT scan. Zane has had a rough road with ITP but he still has a beautiful smile on his face...

        Zane was born May 10, 2007, in Lawrence, Kansas. Thinking he was a just a normal active 2 ½ year old, we thought nothing of his bruising.  In November of 2009 after noticing bruising on his legs he was taken to the doctor, and had a CBC done. 

            The next day I (Ronda) received a phone call from the doctor and was told Zane needed to be taken to the Cotton O'Neil Cancer Center to be seen by a specialist because his platelets were critical at 12,000.  A normal range is 120,000 to 400,000.  Dr. Jakica Tancabelic, M.D. diagnosed Zane with Idiopathic Thrombocytopenic Purpura (ITP).   The symptoms of ITP are similar to the symptoms of other diseases that can cause platelet counts to drop.  ITP symptoms can include, small red dots on the skin caused by broken blood vessels (petechiae), purple spots on the skin (purpura), large bruises, especially on the arms and legs, resulting from seemingly minor bumps (ecchymosis) and bleeding from the gums (gingival bleeding). If a person with ITP has very low platelet counts, it is possible to have internal bleeding or, in rare cases, bleeding in the brain. 



Zane's first stay in the hospital for
IVIG and steroid treatment.



         He was sent directly to Stormount Vail for intravenous immunoglobulin (IVIG) treatment.  That was the first of many 3 day stays at the hospital.  The first day consisted of the IVIG treatment and his first shot of IV steroids, very harsh and very hard on his little body.  The second and third day in the hospital was to watch for dehydration, and the 2^nd and 3^rd shot of IV steroids.  This picture was the harsh reality that he may never be able to be a “normal boy”.

            After several IVIG treatments, Zane's body quit responding to the IVIG.  Therefore we decided to use the predisone treatment.  After 9 months of predisone, Dr. T (as we call her) decided it was time to take more proactive step.  In November of 2010, Dr. T sent Zane to a specialist to consult for a splenectomy, which is a treatment as well for Chronic ITP. One of the spleen functions is to remove old red blood cells. In most patients with ITP, it is the main site of platelet destruction.  In chronic ITP, surgery to remove the spleen is an option if the platelet count remains too low or doesn't respond to treatment. Only about 10 per cent of children with acute ITP have the operation.  The surgeon said that Zane had a spleen and mini-spleens, therefore we were excited this would “cure” him!  Zane also has to  take a lifelong antibiotic to prevent infections.  Zane came through the surgery with flying colors, but after a week his platelets went back down.

            In May of 2011, Dr. T thought it might be a good idea to get his tonisles removed because of infection.  Well, the surgeon took out infected tonsiles and the night of his surgery we had to rush him to the ER because his throat was swelling shut.  He spent 3 days in the hospital for a simple tonsillectomy. 

            Since May of 2011 we have tried to keep Zane out of the hospital and continue bi-weekly blood draws.  If Zane gets a simple cold or infection his platelets drop, which caused him another hospital stay in February, which consisted of IVIG and steroids.  This instance Zane's gums started bleeding, which is not a good sign for ITP patients.  It is kind of like a few months ago when Zane bit his tongue and it bleed for 24 hours.  His platelets were 87,000 when he left the hospital and were back down to 20,000 one week later.  

          Dr. T has now determined that since Zane cannot stay out of the “critical range” that we should consider the treatment “Nplate” (http://www.nplate.com/).  Nplate® is a man-made protein medicine used to treat low blood platelet counts in adults with chronic immune thrombocytopenia (ITP), when certain other medicines, or surgery to remove your spleen, have not worked well enough.   We have to wait 30-days to see what the insurance company is going to say about the Nplate treatment, because of the cost.  We have been told that the Nplate treatment will run approximately $3,000 a week.  The Nplate treatment requires weekly CBC and the Nplate injection for an unknown amount of time, it all depends on Zane and his reaction to it.

Zane's biggest dream right now is to play baseball, he talks about it everyday, but the only way Dr. T will let him play is for his platelets to be above 50,000. 

Pure happiness.... Zane's platelets rose high enough to go for a ride
with his brother, Wyatt.

What a couragous kid! I'm looking forward to seeing Zane on TV playing professional baseball.

Greta :)

Is it the ITP or A-Fib?

Lisa Cassella has 3 daughters, 2 grandkids, a dog, a cat, rides a motorcycle and lives in Middletown CT. She was diagnosed with ITP in February, 2012. Lisa works with special needs teens (autism & asperger's syndrome), has a cracked sense of humor and is a bit of a hockey fanatic (go Bruins!).  Her favorite quote: "Courage does not always roar, sometimes it is the little voice at the end of the day that says "I will try again tomorrow."

My name is Lisa and I live in central CT.  I’m a 42-year-old mom of three daughters and grandma to a beautiful 2 year old boy and a gorgeous 11 month old girl.

 I have ITP and Atrial Fibrillation.   The A-Fib has been an issue for the past couple of years and I was put on heart meds and a blood thinner.  On the morning of February 24, 2012, I woke up with a weird “rash” on my lower legs and feet.  It wasn’t raised or itchy but I had red “spots” all over me.  I made an appointment with my GP to find out what was going on.  I had to see someone different because my regular doc wasn’t in that day.  By the time I was seen, the “rash” had spread to my hands and forearms. 

The doctor I saw argued with me at first, telling me that it was an allergic reaction to fish.  I told him, “I don’t eat fish and I’m like a 3 year-old if I get some in my mouth – I spit it right out!  It is not a fish allergy!”  He really did continue on with the allergy thing until he finally gave in and said “Fine!  I’ll order a Lyme test and bloodwork – will that make you happy?” 

 I did the bloodwork and waited 4 hours for a phone call – meanwhile the “rash” was still spreading and I was starting to panic.  I called the office and was told they didn’t have the results and that I should call Monday for an appointment with my regular doctor.  Three hours later I received a phone call from the on-call doctor.  “Ummmm Ms. Cassella?  We need you to come to the emergency room immediately.  Your bloodwork results show a platelet count of less than 1.  By the way, don’t bump anything, especially your head, on your way in.” 

That was the start of a terrifying road.  The scary part of ITP is the Idiopathic – is it Latin for “We have no idea where this came from”?  I was given four bags of platelets during my eight-day hospital stay.  I received multiple infusions and massive doses of steroids.  I was bleeding from everywhere (and I mean everywhere!) but no doctor was willing to come anywhere near me for diagnosis until my platelets were above 1000.  It was determined that I was severely anemic, elevated liver levels and all my numbers were askew.  I had a number of related gastric issues including H-Pylori and an ulcer.

That was the start of my journey of ITP and A-Fib.  It is an awkward combination to treat.  The treatment for ITP is to increase my platelets so I can clot if needed.  The treatment for A-Fib is to thin the blood so I don’t clot and have a stroke.  I have blood tests every ten days or so.  More if I find a lot of bruises or petechiae.  My platelet counts have been hovering at the bottom of the normal range once I’ve weaned off the steroids and I have my fingers crossed that I will be one of the lucky ones who don’t have to struggle with constantly tanking numbers. 

It has been almost 6 months and I am trying to be optimistic.  The drawbacks are that I am constantly exhausted.  I’ve packed on 30 pounds with the help of the steroids and am just too tired at the end of the day to do anything about them.  My daughters don’t understand that I can’t do the things I used to.  My friends don’t understand why I don’t go out.  My co-workers assume that if I’m at my desk, all is well.  How many times have I heard “But you don’t look sick!”?

Is it the ITP or A-Fib?  Could be both, can’t find a cure for either