Hi everyone. I have been lurking in this forum for 3 years now, since my initial diagnosis of ITP. I'm so thankful for all the information I found here. I finally gained the courage to post. It took some time for me to come to grips with it all honestly. In my twisted mind, I thought by not putting words and thoughts out there for all to see, I wasn't truly a victim. If I didn't talk about it, it wasn't real. Now I realize that just because it is real, doesn't mean my life is over. It doesn't make me any less of a whole person, and I'm not damaged goods. Although, I would be lying if I said to you that I believe that every single day even now.
It all began with a couple of nosebleeds. Didnt' think too much of it at the time because I suffered from them frequently as a child, and during pregnancy. Then the bruises began to pop up; big ugly black and purple things. A black eye. I looked like I came out on the bad end of a bar fight, and I hadn't done a thing that would yield those results.
So, to my general practitioner I go, on valentine's day 2011. She does a CBC and tells me, the results will be in in a couple of days. Before I made it back to my office, my cell phone was ringing and her voice on the other end. She tells me my platelet count is very low, at 9k and I am to be at an oncologist's office first thing the next morning. She offered no further information, and at this point I am in a state of shock and disbelief. Like many others, that night I turned to Dr. Google to see if I could self diagnose. And every turn led me to Leukemia. Needless to say, I didn't sleep that night, or for several more right after that. The appointment the next morning was very stressful. There were a lot of needles and nurses. My platelets were 12k (oddly, an improvement) and I left there with Prednisone. By the end of the week, they were still less than 30k, so doc ordered IVIg. Which brought my count to the 40k range, but with horrible side effects; eventually labeled as aseptic meningitis. As my count dropped again the next week, we deferred to Rituxan infusions. I had the typical reaction that many others experience during the first infusion but it was fixed and I made it through just fine. My platelet count rose slowly, but steadily for the next 6 months. I've had them checked periodically over the past 2 years and in February of this year, I had 232k.
As the old saying goes though, all good things must come to an end. After a very stressful couple of months at work, my exhaustion level seemed to just get worse. I felt myself falling asleep driving home from work in May. All I wanted to do was go home and sleep. On May 14th, I noticed the petechiae on my legs and a black bruise covering the entire top of my foot - it wasn't there 2 hours before I noticed it. I went back to my hematologist the next afternoon for a platelet count and when the nurse came to tell me my number, she didn't give me a number - she said come with me please. She had already told my doctor and he met me in the hall and for the first time, I saw 'worry' in his eyes. He said my count was 2k. He asked had I been sick or had any fever lately, I said no, not in over a year. The only thing was the awful job stress. He made sure there was some Rituxan available, sent me home with Prednisone and I was to be back first thing in the morning for an infusion. He also mentioned a platelet transfusion.
However, my reaction during the infusion was a tad worse this time, I completely fainted 20 minutes into it. According to the nurse my blood pressure just dropped to 80/30. So we waited about 45 minutes and began again. 20 minutes in, the anaphylaxsis began. So again we waited and began again. Seven hours later I was done, and exhausted. I felt bad all weekend and by Monday was dealing with severe abdominal cramps (was still taking Prednisone at the time). Normally very tolerant of pain, I landed in the ER after 8 hours of knee buckling pain. It was really high and radiated to my chest; was not really in my stomach.
By the next morning I had had xrays, MRI's, and immeasurable amount of pain meds from Dilautid to Demerol, and was awaiting a time for an endoscopy. Gall bladder/pancreas/liver issues had been ruled out. EGD was not a pleasant experience, as I apparently woke up in the middle of it, fighting and extracting everything out of my mouth which led to a severe bite. Because my platelets were only 25k then he couldn't do much while he was in there. When I woke up again all I tasted was blood and my mouth looked like I had been in yet another bar fight that didn't end well. The picture from the internal surgeon guy showed what he called 'a giant bruise' within the layers of my stomach, right at the point where my spleen connects. There was no explanation for it, and we scheduled a follow up, which I just had last week. The bruise is now 98% gone. He saw three small spots that he biopsied, which I get results of today. We discontinued the Prednisone and moved forward with the Rituxan.
After each infusion my platelet count increased. It has been 7 weeks since I began the Rituxan and my platelets are up to 187k! A much quicker response than in 2011; I'm hoping that is a good sign and maybe I will have a longer remission this time. I am feeling much better, have more energy now and am sleeping somewhat better. I am by nature, a very anxious person, so mentally this last round has been quite challenging for me. I have begun the battle within myself again, of feeling like damaged goods. Add the stress of work (trying to change that situation) still, and the mounting bills and I don't think I'm doing myself any favors with all the worry. Someone in the billing area talked to me about some financial assistance from Genetech, the manufacturer of Rituxan. I have been waiting for an approval for a couple of weeks. She called me yesterday to tell me that I don't qualify because my diagnosis was not cancer. Genetech doesn't provide that assistance for ITP diagnosis.
So, that's my story. I have a good number now, but am still struggling emotionally, and financially. Thanks for listening and allowing me to share.
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