ITP does not discrimate when it strikes its next victim. It affects the young and old, rich and poor all over the world. Dealing with this blood disorder is no easy task. The fear and frustration of not knowing where the roller coaster will take us next can be daunting.

This blog is for ITPers to express thoughts, feelings and lessons learned during their ride. Send your post to We want to hear from you.

Friday, June 29, 2012

I Have What?

Hap Hapner has been a part of our ITP family for a while and has shared some of his experiences with us via the Facebook ITP support group pages.

Now, we get the rest of the story....

I Have What?

That was the question that kept running through my head over and over. The doctor standing at the door to the room in the E.R. was talking to my Lady saying something about removing my spleen. REMOVE WHAT? Wait a minute, what the heck is going on here. Things were moving way to fast. So where did this all start?

The Lady in my life had been suggesting that I should be getting all those 50+ year old test done while I had the time being unemployed. So off I go into the public health care system. It all started the way any new patient going to see his/her doctor for the first time. Fill out ALL the paperwork. Who had what, did you break that, bla bla bla. Off to lab to get blood drawn. I had an appointment set for 2 weeks to get all the follow-up stuff going. The next morning I receive a call from my doctor’s nurse asking for me to come in as soon as possible. Yes, ALL of the “BAD” thoughts came up. “Great Gods, am I going to be alive next week?” What would cause the doctor’s office to call first thing in the morning asking me to come in.

My doctor goes right past “Good Morning” straight to “You need to go to the E.R. and have a platelet infusion.” I do have to give Dr. Garcia proper respect, he said all of my blood work looked great except for 1 (one) very important part, platelets. He hands me a copy of the lab report and he is right. My blood looks fine, everything hitting almost mid point on any of the scales. All but platelets.

“OK Doc, what the heck causes that and is there a pill or something for it?” What Dr. Garcia said next floored me and still does today when I think about it. He said, “I have only read about it, but I believe you may have ITP.”

I have what!” He gives me a rundown as he understands it. Well, what he understands and what I heard are two very different things. So off I go to the house (not the ER) to look ITP up. There is a lot of stuff out there if you Google ITP.

My platelet count was 3,000, way to low to be doing anything other then lying down. Using the computer, I found that almost everything I had listed on that “how do you feel” part of the doc’s form was listed with ITP; bruises, nose bleeds, fatigue. That explained a lot, but now what to do about it. Again enter my Lady. I’m told (by her) we are going to the ER and that was it. So armed with my new knowledge I got into the car. More paperwork and another blood draw and waiting. Then after hours of waiting, the ER doctor comes to the room and all I heard was “set up to remove his spleen.” Being half a sleep I freaked out! Wait a minute, remove what! I got up and left the hospital.

Being a mechanic this made no sense to me. If a part is broke, you look at it, try to fix it, and if all else fails, remove and replace. Well, no one could say “Your spleen is broken.” They could not say it’s only working at 50%. NOTHING! It took an Assistant Professor of Clinical Medicine to help me understand just what my body was doing to itself. I’ve been told at times that I can be a bit “self destructive,” but this takes it to another level.

I have discovered that depending on which doctor you’re talking to, which treatment they believe works. There is not one kind of treatment or cure for ITP because it affects each person differently.

So after being reassured by Dr. Harrington that they would try all they could not to remove the spleen, I headed back to the ER to get a steroid injection to get my count to a safer level than where it was at 3,000. So they get the count up to 27,000 after 2 injections and set up LOTS of doctor follow-up appointments & blood draws and send me home.

I’m still learning something new about ITP every day. My body does something different or I read it here on the internet. So far Prednisone seems to be the only thing to keep my numbers up, but the price the body pays for that are HUGE! I’ve done IVIG and did get a nice boost (short term) in numbers. Right now I’m going thru Rituxan treatment, one treatment a week for 4 weeks. Then it will be weekly blood draws for 4 weeks, then twice a month and see where thing level out.

It’s all “Wait & See!”

Tuesday, June 12, 2012

I'm not ill, just a bit faulty!

Since I'm reaching another turning point with my ITP, I thought I'd contribute my story so far to this blog. My name is Caitlin, I'm 21 and a student from sunny Wales, UK. My ITP story goes back to the spring of 2007, when I was 15. My first symptoms were petechiae on my arms and chest, but I put it down to getting too hot in rehearsals for a musical I was in. I also trained 4 nights a week in karate and competed at a national level, so bruises on my arms and legs were normal to me, I didn't even notice them!
            That little pinprick rash soon turned into lots of big angry looking red spots all down my arms and across my back that didn't disappear when my Mum pressed a glass to them- cue panic! I was at the Dr's office that very day being poked and questioned and having blood taken, but feeling absolutely fine. I carried on with my day, went to my Saturday job as a waitress, and was looking forward to a party for a friends 16th birthday.
            Needless to say, my night didn't go as planned. My Dad picked me up from work an hour into my shift, I'd had to cancel on my friend and go straight to hospital for a whole load of tests. By midnight, I had the diagnosis- "You have ITP. It means your platelet count is low, so you bleed easily." My Dad lost a sister to leukaemia when she was a toddler, so my diagnosis was something of a relief to him, as, unhelpfully, all the phonecall had said was "Your daughter's blood counts are very abnormal." However, I was terrified. I knew what a platelet was, but getting a major diagnosis of a disease I'd never heard of at 15 years old was horrible. 
            Being a nosy, scientific type, I threw myself at the internet and tried to research the best I could, but all that achieved was convincing me that I was going to die of a brain bleed! Then we found the ITP Support Association, a UK charity who send out factsheets and newsletters to patients and families. I remember they had a leaflet for kids and teenagers that helped me with a lot of basic information and reassurance that though the condition is rare and scary sounding, it was by no means a death sentence. I also got some cute fluffy toy platelets!
            For that first 6 months, as I was still a child, we adopted a watch and wait approach, and hoped it would sort itself out, which was fine for the most part. I've never been bothered by needles, and apart from a huge nosebleed on an exam paper (oops!) I didn't have too much trouble and passed all my exams with flying colours. However, my ITP soon became more of a problem. With counts below 10k I was always tired, and had huge bruises, and I missed school a few times because my nosebleeds were so bad. It was around then I started on high dose Prednisolone. I'd taken it before for asthma, but never had it been so much (70mg, for those in the know) Teenagers can be cruel, and as if the huge weight gain didn't get me enough grief, my bruised arms and strange behaviour (the side effects manifested as mood swings, depression and sleep disruption) attracted the kind of whispers, pointing, glances and questions no one ever wants, never mind a 16 year old girl. No one wants to be asked "Is everything ok at home?" when you know full well you have the most wonderful family in the world who would never ever hurt you, but even when I'd tried to explain the condition people didn't believe me, and they talked. I found out who my friends were pretty quickly. That was some of the toughest stuff to deal with for me, even to this day.
            It became clear that I couldn't stay on the Prednisolone forever, even though it did help my counts. I had Rituximab treatment in January 2008. My counts began to climb after only a couple of weeks, and I was declared in remission in June 2008. I was still under the watchful eye of my haematologist, back in and out for check ups for most of the rest of my school life, but with counts of 200k+ all the time, it was hardly a chore. I finished high school in May 2009, got good grades and spent the summer saving money and hanging out with my friends before heading to university in September, just as any 18 year old should! But was this the end of my ITP story? On the advice of Greta (I'm a terrible editor and have a long story!) *tune in next time* to see what happened next!