You Are Never Alone!

Do you remember how you felt when first diagnosed with ITP?

Were you afraid, confused and felt all alone?

Bobbie Scott was given the bad news when she went to the emergency room for an eye infection. A CBC showed a platelet count of 16 and she wound up staying in the hospital for three days getting IVIG infusions.

What a shock!!! I'll let Bobbie tell you the rest of the story....

After receiving the IVIG for 3 days my platelets increased to 344 on July 31st. That was the first time I went to see a hematologist in Owen Sound, and he was going to perform a bone marrow biopsy and aspiration on me, but decided against it since my platelet level was high, and in the normal range. I was told I had to get bloodwork done weekly, just to monitor my platelet level.. and they are as follows.

August 8 - 208 
August 15 - 88
August 22 - 92
August 28 - 137   

At this time, since my platelet count had decreased and had been all over the place, the hematologist decided to perform a bone marrow biopsy and aspiration on me. I was given about a 5 minutes notice about it, and I'm so thankful that my husband was with me. We were cramped into the smallest room ever, it was me, my husband, the doctor, his nurse, and the man who was collecting the specimens. The localization freezing needle was such a burning pain and since I was so nervous as well, I was crying and moaning in pain. The whole procedure was awful. The doctor tried to make me feel comfortable by talking to me about other topics but I was in pain.  My husband, Derek, held my hand the entire time, and when it was all over he nearly fainted and had to be sat down on the floor. Seeing a loved one in pain can be very upsetting, and I think that is what caused him to nearly faint. -- Thankfully , the results of the bone marrow and aspiration came back with normal results and no cancer in my bones. 

September 6 - 74
September 13 - 81
September 18 - 54   

The hematologist decided that he would now try me on prednisone. Normally it's a dosage of 1mg/kg that a person weighs, and I weigh 60 kg. However, he started me on half of the dose at 30mg prednisone for a week, and then decreasing by 5 mg each week following.

September 25 - 158
October 2 - 110
October 11 - 100 

 The hematologist decided that he wanted my platelets to stay in the normal range for multiple weeks in a row, so he increased my dosage back to 30 mg. He stated that he wanted me to take the 30 mg continuously for 3 weeks.

October 16 - 166
October 23 - 122
October 30 - 94  

Now, the hematologist has decided to increase my dosage to 50mg prednisone for 2 weeks, and then 40 mg for 2 weeks. When I went to see him on this date, I waited a total of 2.5 hours to see the doctor and only saw him for about 10 minutes. He stated that if I had come in originally with a platelet count of what I had at this time, he wouldn't have started me on prednisone. However, since my platelet count is all over the place, he needed to treat me.
 
The next day, October 31st,  I was at work when I got a phone call from the hematologist's nurse on my work phone line. She stated that she wanted to make sure I was up to date on my immunizations, especially streptococcus, haemophilus, and Neisseria, because they may perform a splenectomy on me eventually if needed. 

What a way to get news ! The hematologist did not once mention this to me when I saw him the day before! I was very upset to get news like that over the phone with no warning, and I cried in front of my boss and my co-workers. I don't want them to take my spleen. It is the one thing in my body that fights off illness, and I don't want to lose it. I said to the nurse on the phone "what if I don't want him to take it?" and the nurse said "there are plenty of people in this world walking around without a spleen". 

Yes, this may be, but I don't even know how long I was living with low platelets, and I felt FINE! I don't know when my platelets started going low. I have no idea. I'm so completely frustrated because I can't control what my blood is doing. Is there something I can do to change my diet? Exercise? I want to do everything I can to not let them take my spleen at this point in time. I'm struggling with getting advice from my sisters, and my mom, and my husband, and my dad. I just don't know what to do at this point. I've also stopped taking my birth control (since it was the only thing I was ingesting into my body that could affect my blood possibly) to see if that will help or not. 

If anyone has any advice for me, it would be greatly appreciated. My tear ducts have almost completely dried up, because there's nothing left there anymore. I just need a positive, uplifting thing to happen because I don't know if I can take reading on my bloodwork -- platelets (LO).

Since Bobbie sent me this email, she has joined an ITP support group on Facebook and has received wonderfully encouraging support from fellow ITPers. 

I was also able to connect her with Margie Doman who also lives in Owen Sound and Dale Paynter who heads a support group in that area. The amazing thing is that Bobbie works in the same office as Margie's doctor and Bobbie's mom and Margie were classmates in school!!!

Lesson learned.....No matter where you are, how you are diagnosed, or what you (don't) know about ITP.... Help is right around the corner. Maybe not in the same town but with the ITP Support Groups - you are never alone!

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.

Happy ITP Day!!!!!

       

Meredith Prescott and her best friends

Meredith Prescott has many reasons to celebrate today. She has taken her fight with ITP to a whole new level....

            Today is September 27^th,. For almost anybody, this day is another day or a date you look past once its over.  But to me this day is monumental and will continue to be remembered.  Today is ITP day, a day dedicated to spread awareness and honor the lives that have been taken due to a rare and cruel blood disorder.   Today marks the 10-month anniversary of when I was diagnosed.  Today marks one of the most crucial blood tests at the hospital that I will draw as I have been fortunate to be weaning off the medicine, but today’s test will determine which direction I will go.  The irony from day one of my journey still stands strong.

            As I look back over these past 10 months, I cannot believe how much has changed but how fortunate I am regardless of all the challenges I have had to overcome.

            While many of us at 22 would say their biggest accomplishments are graduating from college, getting their first job, or starting a graduate program, mine is far from that. While those are all great accomplishments and should never be underestimated for anyone, those mean an ounce to me compared to what was accomplished on August 11^th. 

            When I think about perspective and life, helping people and giving back to others are the most important values of mine. After writing my first blog post on a whim, which took off with over 6,000 views in just over a week, I knew I was capable of making a difference. I wrote it as a preface for the walk/fundraiser and wanted to utilize my energy into something positive.

           

The organizers of the walk/festival

This summer I organized with my two best friends and the organization a walk/festival for Platelet Disorder Support Association. PDSA is the sole organization that supports ITP by promoting advocacy, education, and research.  This organization has united many from all over the country who have ITP since it is not common and has amazing support groups for those who have it. Because ITP gets no awareness from the general public let alone no national funding, it was so important that others learn and know what ITP is so that someday there can be more treatment options and a cure.   This was the FIRST big event ever in the tri-state area and raised more money then any walk in the country totaling way above $40,000.

            I am grateful to have grown up in Livingston, NJ.  The community itself along with its residents were beyond incredible by supporting this walk in multiple capacities. 

The town along with many others showed up with over 200 people to walk and participated in the festival, which included the slides, eating, and the silent auction.  The town let us use the highschool’s oval for a few hours and provided security and police.  Local businesses were beyond generous by supplying food, prizes for the silent auction, and a slide.

            I gave my first real speech in my life, which I never thought I was capable of doing, since I wouldn’t even take communication class in college because I was so afraid of public speaking.  Strangers I had never met showed up to the walk and donated and were so excited to hear about something different and unique. It offered perspective to others and people with ITP were so thankful that this day happened and although many couldn’t make it because not many are from my area, they felt encouraged to start a fundraiser in there area.  Some patients came locally and were shocked and so excited to actually see something being done for ITP. Many from all over the country contacted me thanking me and were so happy that to see more being done.  My doctor, Dr. Bussel, a top doctor in the world, spoke along with the organization director.  He had never been to any walk or fundraiser for ITP before, as his office was beyond stunned that this actually happened.  The mayor of my town came and Livingston was a united community on August 11th.

Dr. Bussell, the Mayor of Livingston, Nancy (PDSA) and Alan Karpas

            I’ll leave you with one last story that shows the impact of the walk, being an advocate and speaking up about ITP.  One of my closest friends was wearing the purple sport bracelet this week that I handed out at the walk to give to all the participants.  She wears it everyday and often explains what it is when people ask. She was working for an oral surgeon at the office and decided to check the fax machine.  She never does that, but the secretary was ironically out so she figured she would. She picked up a blood result sheet and decided to look at the platelets.  They said 3. She immediately knew that that wasn’t the normal range because of me and ITP and this whole experience,.  She called the doctor who was at the hospital, and he immediately called the patient and sent him to the emergency room.  The patient originally came in for blood blisters in his mouth but had some bruising, thinking it was a dental related issue not realizing the severity of what was occurring.  Hours later my best friend was told she saved his life and the doctor thanked her.  Every minute matters, every choice matters matters, and every decision matters. I am grateful that my friends are so supportive, intelligent and realize how essential it is that people understand this so lives are not taken due to lack of knowledge by both the public and medical community. Sport purple forever.

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.

Amber Yard emailed this to me so I could share it with you all. Her story reflects the nightmare many of us have experienced...

This is something I will have to deal with for the rest of my life and my nightmare started March of 2012 with a trip to the ER on a Friday. We just lost our house and was in the processes of moving. So every time we went back to the house to get something more, bruises would pop up. My whole left arm was black and blue from moving the fish tank (75 gallons) and under my butt was the impression of a tailgate. 

I was in the ER with no insurance and with platelets at 7,000. I was covered in bruises all over (I looked like a punching bag with hematomas on my upper thighs).The ER did not give me platelets or IVIG's (since I have no insurance) and sent me home. I could have died that weekend, and that is my reality. Platelets are suppose to be at 150,000 to 400,000.

I had 8 rounds of a chemo (which made my hair dead loss like crazy, so I had my husband shave it for me). It was a drug called Rituxan, and up to 100mg of Prednisone a day. My platelets last year topped out at 105,000. It is a roller coaster, up then down, I am at 32,000 as of last Wednesday.  I am with my 2nd Oncologist and I don't know what is next. My medical bills have topped out so far at $300,000 and that was due to all the chemo.

Went last Wednesday for a CBC and had a good feeling it was in the normal range. The next day I got the CBC back and I was not even near normal, under 50,000. Once again I am back in the danger zone. Since this all started I've been in pain and I work full-time and my husband is a full-time student (he keeps saying he will drop out and get a job (that is not an option, he is so close to finishing school). I worked, with the chemo, I really couldn't afford to take off. The stress of all of this is taking its toll on my husband and myself. I am keeping my fingers crossed, that is all I can do and not think to much about it.

I have been tested for everything under the sun and I feel like a pin cushion. We lost our house last year due to cut backs at work (at the same time I was diagnosed with I.T.P). We also sold almost everything and now we sleep on an air mattress. The only thing we have is each other and our 2 small dogs. They always helped when coming home from Chemo. But if it wasn't for the support of my husband I don't think I would have made it this far.

The end of May 2013, I was hospitalized with a count of 14k. I stayed the weekend and got IVIG's, that got my count up to 105k. A week later, I went for CBC and they had already dropped. I was put on Promacta for 32 months and my platelets never got above 40k. So now it’s August and trying N-Plate, I've had 4 injections so far and started at 14k and as of yesterday (8/15/13) I am at 35k. Every week when I get home from my injection, my 2 Chihuahuas comfort me with their warm little body's to soak up the stress. Like everyone has said, it is a roller coasted and you just have to hold on because the safety belt doesn't work.

It is still very hard to get up every morning knowing that I am the bread winner right now in my household. I wake up either in pain or more tired than I went to bed but I have to keep going. I am very lucky to have found Charity Programs in my area that have helped me with medical bills and medications. But it is still hard to live a normal life even though I try.  

Amber Yard

diagnosed 3/2012

 http://theyardson.blogspot.com/

Samuel Lollman has to be one of the most cheerful kids around. He has had ITP since he was a wee lad but that beautiful smile never disappears from his adorable face.

His mom, Julie shared their story of bruising, hospitals, treatments and determination to live a full happy life in spite of ITP....

We jokingly refer to Samuel as our million dollar baby. Being a preemie and spending a month in ICU will earn you that title.

A year after he was born there was little sign that his life started out fierce and fighting. Cruddy ventilator lungs was the only lasting sign. Samuel was  your average 3yr old who loved life and left nothing unexplored. 

The first bruising we noticed was in 2009. I remember telling my older son that he needed to not be so rough while they are playing. ( awful, I know) It was winter and the boys had been playing in some unexpected OK. snow. Later that day he developed huge bruises across his lower back that seem to get worse and spread out by the day. I was at one point even worried the school would think we were beating our child! I still never had any alarms in my head going off and chalked it up to great outside fun and a clumsy boy. 

A couple months later, I watched Samuel lean over to pick something up and barely hit the corner of his eye. He didn't even flinch and I thought nothing of it. Moments later, I look at him and there is a huge ball on the side of his eye that is black and blue. Bleeding inside his eye and blackened the other side of his face and corner of his other eye. Then the blood looked almost like it was slowly moving down his face. I had never seen anything like it! 

Finally some alarms went off. His brother was going to pediatrician the next day for a followup and I decided I should probably take him with me and just

let him take a look at his face. Our awesome pediatrician did bloodwork just to be safe and when he came back he said that Samuel had only 5k platelets and normal was 150k and above. He then proceeded to tell us that he is at risk for inter-cranial hemorrhage and that he could not rule out leukemia. He told us to head to the hospital and that they would be waiting for us. Ugh. In my head I am thinking, ok, what is a platelet? What did they do? How did a followup appt. end up with us going to the hospital fearing for our child's future? We head home to pack a quick bag and drop off our older son.

At the hospital we waited half the day and night. They gave us a diagnoses and said they were pretty sure it was not leukemia. I've never been so relieved. Samuel began his first of what would be 30 plus infusions of IVIG. The infusion lasted 8 hrs and nasty side effects followed with fever, vomiting and migraine.  

We were given all the odds and percentages for ITP and we were hopeful as the remission rates for his age were great. Only 4% will go on to be chronic as children. 

A week later his numbers were in the 400k range and our hemoc. told us she thought he was in remission. Yeah!

Two weeks later we went for a followup. I noticed bruising coming back and after a CBC, his body had already chewed through most of the 400k platelets and was down to 60.  This became a pattern over the next year. Every two-three weeks he was in hospital getting IVIG infusions. It was definitely a lifestyle change. Weekly blood draws and missing out on fun things because he was in the danger zone. As a Mom and friend, I became the most unreliable person. We could never truly make plans at school or otherwise because we simply did not know what our week would entail. 

After a year, we realized that Samuel is part of the 4% who's ITP is chronic. We explored another treatment option called mercaptopurine . This was an oral chemotherapy  pill given  to leukemia patients as a maintenance drug. Scary, but it was shown to have good results with long remissions. It would be the first time Samuel learned how to swallow a pill and he did it like a champ. He took it at night at certain specific  times. He did not have many side effects, mostly a nauseated stomach. After 4-5 months I began researching the drug and found many disturbing facts about secondary leukemia risks while taking this drug. It was not helping his numbers and his doctor took him off. 

We began discussing splenectomy and vaccinated him and prepared. We decided on doing a bone marrow biopsy to be sure prior to surgery to make sure we were not missing anything. That was tough and glad it was done. During this time we started noticing bruising and bleeding with higher counts. I would assume he was low, take him in for labs and numbers would not match the symptoms. This began a whole series of testing putting splenectomy on hold. Aggregation testing and platelet function testing were coming back abnormal. So not only did his body fight off his platelets, the ones he did have were not functioning. Many, many tests were done for months, specialized tests sending as far as as Wisconsin with no real answers.

 

In Feb. of 2012 I was getting Samuel's bath ready and I could hear him commenting on how his pee looked funny. I turned and looked and there was a stream of dark brown. It didn't even register what it was at first. You get that familiar pit in your stomach and I knew we were in for a long night. I called our doctor and she said to head to children's and they would be waiting to admit him. This began the scramble of packing bags for the hospital and getting our son Ethan somewhere. We are good at not panicking at this point, but the unknown of "what now" is what can drive you crazy.  He was in the hospital 3 days until the bleeding stopped. He had CT scans, MRI and ultrasounds. His platelet count? 80k! Samuel for sure got everyone's attention. The bleeding was from the kidney so a nephrologist was called in. Due to the bleeding, he could not do a kidney biopsy. He did other testing for kidney function that was normal. The hematologist blamed the kidneys and the nephrologist blamed ITP. At this point we were scared that we did not have a clue at what we were dealing with nor did anyone else. 

We decided to try Rituxan. IV chemotherapy was given once a week for a month. This also unfortunately did not nothing for his counts and was a very long month and rebuilding of his immune system and side effects.  I had already been researching, trying to find a platelet specialist. Boston kept coming up and before long we were headed there for a second opinion.  They were super excited to meet Samuel and the first conversation was spent discussing our approval on putting Samuel on their new study for testing. Although very insightful, our options were still limited. Both Boston and his local doctor are concerned with the possibility that there is something underlying going on that has not surfaced even though he has been tested for everything under the sun. He is an awesome doctor who I am thankful we were lead to. He has discussed Samuel's case with rooms full of oncologist / hematologist around the world who met at oncology conferences for their opinions. How awesome is that! 

So now we are in somewhat of a holding pattern. We have had to stop using the IVIG because of the chemical induced meningitis he was having. The most recent treatment he had is Winrho. It was nothing short of a nightmare. He was a very

sick little man and we had some scary moments with this treatment. 

This brings us to our current date. We will be going to consult about starting NPlate. There is positive information regarding this drug. Although I am very skeptical to keep experimenting with these new drugs. It was shortly after stopping the 6mp that he began the weird bleeding symptoms. Coincidence? I am ready to pull out his spleen and be finished but his doctors are still worried there are other issues. There is actually a test that can help determine whether it is spleen or liver that destroys the platelets. Of course this test is only offered outside of the U.S.  Why? Well there are two thoughts:

1. Not enough need for the test and the isotope that is used in the test is very hard to get and the lab has to be certified to get it which is very expensive and hard. This was concluded from a Red Cross research facility that used to perform the test but can no longer because of the isotope. We had an interesting conversation for sure. 

2. The test just is not a good tool. 

That brings us up to date! 

Who is Samuel? He is not the poor 6yr old that has ITP. He is the most happiest, energetic, kindhearted child. He takes every needle and treatment in stride and can be sick as a dog and wake up smiling. We are not dramatic in speaking with him about his disease and after three years he does not really know any different. We find something fun out of every hospital stay and doctor visit. ITP  is not who he is and to speak to and see Samuel, you would not even know he is sick and that's our goal everyday. God gives his toughest battles to his strongest soldiers and Samuel is a survivor and a fighter. 

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

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....

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!!