ITP in an Adolescent Girl Changed Her Career Goal
I was diagnosed with ITP at the very start of my senior year of high school in August of 2004 by my pediatrician, after multiple platelet counts below 10,000 and an easy tendency toward bruising. As a seventeen year old girl, I honestly didn’t care that much that my meager platelet count of 7,000 put me at a significant risk for bleeding, including life-threatening possibilities like intracranial hemorrhaging. However, my doctors and my parents were plenty concerned. My pediatrician assumed upon my diagnosis that my ITP would behave like the pediatric version, so I was put on a course of light steroid treatment for a few weeks and told that my platelet count would rise of its own accord. My treatment came and went. A few days after my treatment had ended, my pediatrician called for a platelet count. When it came back normal, I was pronounced cured by the spontaneous remission that frequently accompanies the pediatric illness. However, my course with ITP did not end up being quite that simple. About a week or so later, I feel asleep with a bracelet on. The next morning I woke up with a wrist completely bruised, a far from normal occurrence in my daily life. My parents – highly worried about their little girl –immediately called my pediatrician at which time I was taken back to the doctor for a platelet count. That count turned out to be another low one, so I was referred to a pediatric hematologist, someone that could help me over the course of this disease since it seemed that it would not be going away on its own. As is common practice in the US, pediatric hematology is paired with oncology, so my pediatric hematologist’s main focus was cancer. Looking back, I don’t really see ITP or my physician as a scary experience. However, those were not my feelings the day my pediatrician sat me and my family down and told us that she was referring me to a cancer specialist. Nor was my fear helped by the ITP jargon found online that suggests treatment of ITP with various chemotherapies and cancer medications, without mentioning that these treatment methods are uncommon treatments for ITP.
My fears were soon quelled however when I went to my pediatric hematologist’s office for my first appointment. I was surrounded by my parents, all of us more scared than necessary, but the office was entirely calming. Somewhere between the hand-painted butterfly tiles that lined the ceiling and the extreme kindness of the staff, I lost the majority of my fears. That first appointment was long, as my doctor patiently described all of the possible scenarios that we might go through over the next few months or years. My doctor decided that the best course of treatment for me would be to restart my steroid treatment and give my body time to heal itself while bolstering my platelet count. My body responded admirably to steroid treatment and after only a short time on steroids my platelet count was back to normal. In high school, I was an avid dancer. I spent the mornings at practice for my school’s dance team and most of my evenings at a local studio. My agreement to steroid treatment was immediate; I would have done anything to keep dancing. For about a month, I really didn’t notice my ITP at all except for the weekly doctor appointments to check on my blood count. The doctor had warned me of side effects, but I was only mildly concerned with those possibilities. Being a senior in high school is a weird time. You are trying to figure out who you are, what’s important to you, and plan the best future for your evolving person. For me, that process was substantially more difficult with the addition of steroid treatment. After two months of treatment, the side effects of ITP and steroids started to shine through.
In order to keep me dancing, my doctor raised and lowered my steroid dosage according to my platelet count every week, sometimes compensating for extremely low platelet counts with rather hefty doses of prednisone reaching 120 milligrams per day. Steroids are known far and wide for their rather nasty side effects, a trait with which I would whole heartedly agree. I experienced numerous heart-wrenching side effects like uncontrollable weight gain, rampant acne, and extensive stretch marks, all drastic, mortal enemies for any teenage girl. I felt lost, helpless, and a bit crazy, like I had no control over what was happening to me physically or who I was becoming emotionally. Looking back, I can write about how I felt and it seems a little overdramatic or ridiculous, but in that moment, during that time, it was sincerely overwhelming. There were days when I remember feeling like I was never going to make it to the end of treatment, yet I did. I actually took my last day’s dose of prednisone on the same day as my eighteenth birthday. That is probably the best birthday present I will ever get.
One of the hardest things was the loneliness that I felt surrounded my diagnosis. My parents and friends, try as they might, just really didn’t understand what I was going through or the feelings associated with ITP and its treatment. My doctors, I feel that they knew what was happening, but they grossly underestimated the impact that the side effects of the medication were having on my daily life. I felt like there was this giant, awful component of my experience with ITP that my doctors dismissed nonchalantly. Now it has been almost three years since I finished taking prednisone, but those memories and feelings are with me and influence my decisions every single day. This statement, to you, may seem potent or unforgiving, and at first that’s how I felt about my whole ITP “ordeal.” However, I have to say, through the benefit of hindsight, this experience has probably afforded me much more of the good than the bad. It’s funny, because I’m pretty sure that if someone had told me I would say that while I was still on steroid treatment, my seventeen year old self would have thought they were crazy. My ultimate experience and the life-lessons that I learned along the way have presented me with so many opportunities and a fervent motivation and drive that I might not have otherwise.
In May 2006, I had a splenectomy, and I have had a normal platelet count since that time. However, I would encourage anyone considering a splenectomy to give it appropriate and serious consideration. After my surgery, I developed a blood clot in my portal vein, the large vein that goes from the stomach to the liver. This occurrence was not only very painful, it also landed me back in the hospital for another few weeks. Personally, I would do the splenectomy all over again. But, if I could pass on any advice to someone considering splenectomy, it would be to balance the pros and the cons equally and don’t presume a flawless fix. Now, I am not trying to imply that you shouldn’t wish for the best, by all means hope for perfection, just don’t anticipate it. My blood clot required treatment with a blood thinner called Coumadin, a rather ironic treatment plan for someone who once worried about bleeding too much. As any medical problem would be, my treatment with Coumadin felt like a complete hassle. After all, I was supposed to be better after my splenectomy, but that too passed and now I have been progressing along just fine, medication-free since December of 2006. Well, I do have to take antibiotics before I go to the dentist, but compared with my weekly doctor visits of the past, those bi-yearly prescriptions are a wonder
Listed above are the negatives of my ITP experience; however, I cannot honestly say that it was without benefit. My decisions have been shaded so differently through this experience and I genuinely believe that I am a better and stronger person because of it. Before ITP, I was planning on going into Public Relations, a field which I have minor enthusiasm for. Now, I just finished my junior in college at Oklahoma State University studying to go to medical school, so that one day I can be a pediatric hematologist and treat kids or teens like me. My path in life is infinitely unlike the course I would have chosen before my ITP diagnosis, but I view that as a blessing. Although, there were parts of the ITP and the treatment that honestly were horrible, there have been countless advantages, including an extraordinary research opportunity over the last year with Drs. Dee Terrell and James George.
Based on my own experiences, I designed a research project to assess the difference between patient and physician perspectives of the impact of the side effects associated with steroid treatment of ITP and the risks for bleeding. I developed a questionnaire which I sent to ITP patients in our Oklahoma Registry and 94 hematologists in the State of Oklahoma. It asks them about how seriously they rate all of the different side effects of steroids and also how seriously they rate the risk for bleeding. The results of my study are still trickling in, but my prediction is that patients will be much more affected by steroid treatment than their doctors, but that the doctors will be much more worried about the risk for serious bleeding than their patients are. When I first thought of my project, I contacted Dr. George, sometime last year, and asked him for help with an ITP-related research project. I hope that this will provide important new information for patients with ITP and their doctors.
Olivia Update: December 2010
The results of my research study are in! Our original hypotheses were validated by the patient and physician responses. Patients were less worried than physicians about their risk for bleeding and physicians were less worried than patients about the side effects of steroid treatment, such as acne and depression. The full results were published in the European Journal of Haematology in 2 articles (the link to the articles is in the Publications page on the ITP section of this website). The first article describes the study we planned and completed with the ITP patients and hematologists in Oklahoma. Then I had the great opportunity to attend the annual convention of the ITP Support Association in Edinburgh, Scotland in May, 2009. This was a thrilling experience to be both a speaker at the convention and a former ITP patient! I presented the results of our study, and I also gave the same survey about side effects of steroids and concern for bleeding to the patients who attended the convention. The results of this survey are in the second publication in the European Journal of Haematology, and they confirm the results of our survey of Oklahoma ITP patients. I hope that these publications will provide physicians with better insight about the impact of steroid treatment for patients with ITP. And I hope that these publications will stimulate physicians to have more discussions with their ITP patients about the side effects of steroids and concerns about the risk for bleeding. I believe that both the physicians and the patients could learn a lot from these discussions. My own experience with ITP has provided me with infinite knowledge about myself, including a previously uncovered dream to go to medical school. With the help of Drs. George and Terrell, I am now in my second year of medical school learning about the human body and various disease processes. At this point, it is hard to predict if I will end up as a hematologist, but I am certain that my experiences have made an unwavering stamp on my education and the way that I will interact with my future patients.
Comments by Dr. George:
I did not know Olivia as a patient. I first met her when she inquired about working with our research group on a project related to ITP. She was a college sophomore, and almost everyone who works with us on our research is in medical school or in their hematology training after graduating from medical school. Also Olivia was a college student some distance away from Oklahoma City, and could work with us only one afternoon each week. Everyone else works with us full-time, or nearly full-time during summers or for periods of several months during their school. So I was skeptical about whether this was a good idea and whether there was opportunity for a successful learning experience and project. My skepticism quickly disappeared when I and my colleague, Dr. Dee Terrell, visited with Olivia. She was motivated, she had initiative, and she had an excellent idea for a project that could easily be done with her limited time. Of course we learned then about her story with ITP. What we learned is the same story that she has written here. Now, more than a year later, everyone in our group is very enthusiastic about Olivia’s project and, more importantly, about her bright future as a physician.
We have all heard many anecdotes and “pearls of wisdom” about silver linings in dark clouds, about good things that follow bad things. Most of these anecdotes and stories seem superficial and trivial. However I am impressed by how Olivia’s life has changed as a result of her experience with ITP. What she describes was true suffering and agony, especially for an adolescent girl – a time that’s not easy in the best of times. Her description, now written in retrospect, does not have the anguish and pain that it would have at the time she was at the maximum of her steroid complications. Her story about the side effects of steroid treatment is similar to Rosie’s story, also on this website about ITP. What is most impressive is how Olivia interpreted not only her difficult experience but also that she had the insight to understand the doctor’s perspective. Doctors are always fearful about preventable patient problems and always concerned about providing enough treatment to avoid complications, even if the risk is slight. Therefore overtreatment is a common thing in medicine, as doctors focus on preventing any trouble. From a patient’s perspective, symptoms caused by treatments are often worse than the disease itself. This is very common in ITP, as patients may have little or no symptoms of bleeding but major difficulty coping with the treatments, especially steroid treatment. Olivia understood these different perspectives and the resulting dilemma. She undertook the project she described in her story to document the perceptions of ITP patients and hematologists, doctors who treat ITP. Of course we know what we expect. But the object of research is to gather objective data. Therefore we may be surprised by what we learn.
Olivia's story describes her continuing successes. As she describes, she hopes that physicians who care for patients with ITP can learn a lot from her research. But I know that no one will learn as much as Olivia did. Her perspective as a former patient and future physician is very special. She is now almost half finished with her medical school education. We will be able to follow her progress with updates to her story.