Hello Everyone,
I am a 21 year old female, currently in college and playing golf on a NCAA Division 1 team. I have always been a very active, healthy girl with never any health concerns. This past summer, I was working 5 days a week at a country club and stayed very busy (my days consisted of work from 9-5 and after work I would spend the rest of the day practicing until 930pm.) I would workout at least 3 days a week, and play golf at least 4 times a week if I wasn't practicing. Physically, I was not that drained from my summer, because mentally I would push myself to keep going, so I never really noticed if I was tired or not. I have always been extremely active and busy being a student athlete as well, we have a non-stop schedule with school, workouts, and practice. This past summer I noticed something a little unusual with bruising, i was getting big bruises for no reason and little blood dots around my body. I thought it was a bit strange but I didn't do anything about it. When school started last semester, our team went in for our physicals and i informed our school doctor about the weird bruising, he told me to go in for a blood test because i might have a vitamin deficiency. The following week i went in for a blood test and the got my results with all three of my counts being low. my platelets were the most extreme with it being 14. Let me note that this all happened beginning of september 2011. The next day i went in to see a hematologist who told me i either had HIV, Leukemia, aplastic anemia, or ITP. i was then tested for hiv and it came out negative and did a bone marrow biopsy where it showed that my marrow was normal. The doctor then prescribed me prednizone, (i believe 40mg) to start off with. The medication helped slightly but my platelet levels were just hanging around the 20 mark. On September 19 2011, i was in a major freak golf cart accident where I was in the hospital for a week. I had several abrasions all over my body, including torn acl to my left knee, torn ligament in my right foot, 15 staples to the back of my leg, huge bruises everywhere, and 15 staples to my head. The doctors decided to give me a platelet transfusion while I was in the hospital, but my body did not take it, my counts dropped once I had the transfusion and had gotten a rash. It was a crazy month I must say. I was in recovery and still am to this day. I dropped out of school and it was time to slow things down and start focusing on my health. In October, my hematologist referred me to stanford, which is where I am at now. When I first arrived they decided to have me a do another bone marrow biopsy because they said the first sample done was not a good sample. My counts at this time had been hovering around the mid twenties and after the accident they put me on 100 mg of prednizone twice a day. The doctors told me after doing the second biopsy that if you looked at it as a whole, my marrow looks normal, but if you at it in sections the ratios of my blood counts were off. They said that they did not believe it was ITP, and I had a bone marrow disorder. I go to stanford every week for blood tests where they monitor my counts and medication levels. They put me on Cyclosporine in the end of October and since then, my platelet counts have increased to 46, which is the highest they have been and my white counts are normal. I am also anemic as well. I see my doctors once a month for check ups, and it has been 5 months and I still have not been diagnosed. I am going to ask for another bone marrow biopsy my next appointment. I think the scarriest part for me is the fact that the doctors do not know what I have, they are leaning towards the beginnings of aplastic anemia, and found a PNH Clone in my marrow.They do not want to call it aplastic anemia however, because it is not showing itself in its normal fashion. I am currently on 175 mg of cyclosporine twice a day and 12.5 mg of prednizone once a day, and they just put me on a antibiotic. I have just started going back to school again and on a medical redshirt for golf. I recently started playing golf again, even though I still have the torn ACL and ankle problems. The doctors don't really want me playing, but I cant help it, golf is my life. I love it. I am trying to live my life as normally as I can. I just want some answers. THe doctors said if my counts don't start increasing more rapidly, then he going to consider ATG, which I have no idea what that is. And if that doesn't work, then its going to be transplant time (which thank god my brother is a match to be my donor), BUT i do NOT want to do a transplant if the doctors cannot even diagnose me yet. AND the side effects of all these medications suck! Would cyclosporine and Prednizone cure me or is just stabilizing me for a short time? Its crazy how I thought I was so healthy and fit to find out that I might have such a rare disease. Any help or advice would be great! thank you!
