Welcome to Regina's Story
We like to ask all sorts of questions here, from the diagnosis story, to how patients with ITP sleep. How they deal with stress and how they feel when their platelets are falling, appetite, mood and how their life has changed since ITP – Funniest or worst injury and how they manage ‘being sick’… Every ITP story is different. Enjoy.
A little bit about me
I live in Pennsylvania and have always enjoyed an active lifestyle. I also enjoy reading, playing piano, singing, horseback riding, and animals of any kind. ☺ I was born in January 2002.
How I was diagnosed and my journey so far…
When I was about 6 or 7 years old I started getting big bruises all over my body for absolutely no reason at all. My mom then took me to the doctor and he did some bloodwork. We got the results back late that night and my count was at 8,000.
The doctor thought I might have leukemia and told us to go up to Hershey right away. When we got there they did a lot of testing and early the next morning they informed us that I had ITP. They gave me IVIG which made my platelet counts go up to about 100,000 but they went back down a few days later and the treatment made me very sick /nauseous /headache /exhausted. This was during my first year of school.
After that they pretty much watched and waited. I had weekly blood tests taken, and went up to Hershey Medical every few weeks or so. After about 4 months of this, my platelet counts started slowly rising… but they never went back up to a normal count (150,000-400,000). They rose up to a stable area though of 60,000 to 70,000 and stayed there for about 7 years. During this time that my platelet counts were stable I lived a totally normal life and was able to be active again.
However, about 3 months ago, I started getting the tell-tale bruising and other signs that my platelet count might be dropping. I got a blood test done on New Year’s Eve and the results later that evening showed that my platelet count was lower than it had ever been before, at 2000.
I again went to the emergency room at Hershey, this time with just my mother (my dad passed away last year), and they again gave me IVIG. This time, however, it did not work as well. My platelet count only went up to 19,000 but they let me go home with strict instructions to do no running/contact sports/physical activity. I again got sick from the treatment and missed about a week of school.
After that my platelet counts stayed above 10,000 for the most part until about a month later, when they dipped back down to 3,000. I again had IVIG and this time my platelet counts went up to only 17,000. They again released me but I was still not allowed to be active.
About 2 weeks later, in mid-February, my hematologist requested a bone marrow biopsy because some of my other cell counts were off. I had the biopsy done which revealed a totally normal bone marrow which was actually producing more platelets than normal. Soon after this, my hematologist proposed putting me on prednisone.
Me and the rest of my family all knew that this was not what we wanted so we began looking for other solutions. We found a nutritionist near us who specializes in auto-immune disorders. When we went to see him, he did extensive blood testing and discovered several different viruses. He put me on a strict diet and gave me a lot of supplements to strengthen my immune system. He also recommended another hematologist for his tendency to ‘think outside the box.’
I went to see this new hematologist and was very pleased with what I found out. He believed that my ITP was caused by these viruses and that the viruses were overwhelming my immune system. He put me on antibiotics to fight the viruses and give my immune system a break. My platelet count was at 4000 the first time I went to him. Two weeks later it was at 20,000 which was higher than it had been in 3 months! I am going back in 2 weeks and am hopeful that my platelet count will continue to rise.
How I felt before I was diagnosed?
I honestly don’t really remember as I was so young… I do remember feeling kind of ill before though and having a lot of weird bruises.
When my platelets drop…
I can’t actually feel them dropping, but I do start feeling ‘under the weather.’ I get headaches a lot when my count is low and often feel more tired than usual.
When I have the flu…
I have never actually had the flu, but a couple weeks before my platelet count slid down to 2000 I had a bad head cold/fever that took me about a week to get over.
I do not really get stressed out a lot, but when I have to skip school for appointments it can be hard and stressful to get caught up, especially when I have big projects to finish.
It helps that my teachers are really patient and try to be understanding. One of my biggest tips for people newly diagnosed with ITP is to educate yourself and be your own doctor. Take your time before you make a decision and make sure it’s right for you.
Heat – Most of the time, I am actually cold. I do like iced water though and sleep hot at night, although my feet still tend to get cold unless under the blanket.
Sleep – I am definitely a night person, and I don’t really start waking up until the early afternoon, even if I get up around 7. I dream a lot and apparently I talk, sing, and walk around in my sleep (according to my mom). Twice I even took my retainer out in my sleep. I try to get around 9 hours of sleep a night, although usually I end up with about 8 (it takes me a while to fall asleep).
Exercise – For exercise I enjoy running, walking my dog, horseback riding, volleyball, and soccer. At this point, though, my hematologist recommends that I only do the first two.
Appetite –My appetite never really changed, although my diet sure did.
Moods – I think my mood has more to do with being tired than low platelets. When I am tired, which is most of the time, I get irritated more easily than when I am feeling well-rested.
How has my life changed since my diagnosis? – Since my diagnosis, I think a lot more about my health. I have also changed my diet and am a lot more conscious of the impact that different foods have on my body. I also have to be a lot more cautious so that I don’t injure myself. I used to play sports and feel fit and active and now just a short run has me puffing. The best thing that I can hope for right now is that my platelet count stabilizes. I might always have ITP, but I have learned to live with it and to accept that fact. One of my biggest dreams is becoming a horse trainer. I guess I’ll just have to wait and see. ☺
My worst / funniest injury –In 2013 I was in a car accident. I was not strapped in and flew forward, hitting my head on the windshield and cracking the windshield. I was taken by ambulance to the hospital where they did a CT scan and informed me that I had a minor bruise on my brain. Luckily, I did not have any bleeding on the brain and after getting a platelet transfusion and staying the night, I got to go home.
Dealing with ‘being sick’ – It can be awkward and hard to explain to friends what you have, especially since it’s not a common thing and it’s not a physical thing that they can see. The main reason I wanted to share my story was so that other teenagers can know that they’re not alone, and that others understand what they are going through.
I want to thank everybody for taking the time to read my story and I hope it encouraged you.