I begin my story pre-diagnosis. In early 2018, end of January, I got the flu. Boy that was ROUGH, to say the least. It took me a good month to fully recover from it, but I still went to work (in childcare, probably where I caught it) as soon as I was cleared by the doc. I was in a shitty living situation and stressed out as well. The next few months I got through, but felt so exhausted all of the time. I was not sleeping well at night and so I attributed it to that and thought that I might possibly have chronic fatigue syndrome as a result of the flu. I was trying to get myself back into my usual workout routine but I lost all of my motivation and drive to continue. I would do workouts here and there, but I had lost a lot of weight from the flu and was having trouble with keeping up my diet (I also have Celiac disease). I had no appetite.
Cut to September of 2018.....since I am a grown woman, when that time of the month came, it was horrrrrrrrible. All of the sudden my period was super heavy. I started noticing petechiae on my legs and arms, but just thought it was from over-using coconut oil as my skin moisturizer.
October came and again a super heavy period. I had started a new job at the time, which was any easy walk from where I lived (super convenient). November came and again another super heavy period. I was super concerned at this point. I did not have any insurance, so going to the doctor was not my first thought because of cost. I made an appointment with Planned Parenthood for December.
In December, my now boyfriend decided that for X-mas he was going to drive to New York from Austin, Texas. He said that we could road trip together and he would drop me off in Virginia to surprise my family for the holidays. Before we left on the trip, I went to the Planned Parenthood appointment and nurse practitioner explained to me the possibility of having ITP after I told her all of my symptoms, which was the first time I had ever heard of it. So she had my blood tests sent out and said they would call with the results. Not long after that, we began our 1,000+ mile journey. We made it to Virginia, surprised my family and he continued his journey to NY to visit his family for the holidays.
The day after I got there, I got a message from Planned Parenthood saying it was urgent. After a few games of phone tag, I was able to speak to the nurse practitioner; she warned me that my blood platelet count was in the 24,000 range and that my symptoms had nothing to do with any gynecological issues and told me what the normal range was. I was concerned because I was far away from home in Texas. She said if I were to fall and get hurt that I was at increased risk for internal bleeding. I was scared to say the least.
For X-mas I got the best present of all, my period. It started out somewhat normal, but with each day that passed it got worse. The day after Xmas, my now bf was on his way to pick me up to make the long journey home. At this point, my period was out of control. I had blood clots coming out of me and had to change every hour and double up on pads along with the menstrual cup I used. I did not complain though. Whenever we made bathroom stops, I did what I had to do and we continued on our way home. When we got back home to Austin, Texas, I stayed with him and he helped ease my anxiety a bit. The day after we got back, that evening, I went to take a shower. While I was in the shower, I heard a loud thud and felt something slimy fall out of me. When I looked down, I watched a fetus sized bloody clump make its way down the drain. I was in shock. I didn’t really think anything more of it, but I had to go to the store to get more protection pads and whatnot. So we went to Walmart that night. I remember getting out of the car and walking into Walmart and I started feeling dizzy and lightheaded, so I just went to get what I needed while he went and got what he needed and he met back up with me in the feminine care section, where I told him that I really wasn’t feeling well. So he said lets hurry up and get to the checkout line so we could leave. Well he went to one self pay station in front of me I went to the one right behind him. I scanned my items and proceeded to swipe my card, but the dizziness took over me and before I knew it, I blacked out and was on floor with a bunch of people surrounding me saying I needed an ambulance. I was sooooooo confused, didn’t even realize that I had passed out. My bf helped me up and out to the car and got me a bottle of water to drink. He kept saying he should take me to the hospital, but I said no because I had no insurance.
We went to a New Year’s Eve party together where I continued to bleed profusely with blood clots and all, but just dealt with it because I didn’t want to ruin his fun. When he took me home on New Year’s Day, I continued to deal with my heavy blood clot filled period. The next morning I was supposed to go in to work, but I decided this was serious enough to take a trip to the hospital. I called my mom and told her what was happening and she said to go to the hospital. I called urgent care first and the girl suggested I just go to the hospital. So I prepared a bag in case I had to stay in the hospital overnight and called an uber. Well, little did I know, I would be there for days....my platelet count was down to 6,000 and by the time, I got a room it went down 4,000. The doctors knew it was serious. They started me on IVIG treatment the next day and also had to give me a blood transfusion because I was anemic from all of the days of heavy bleeding. Everything seemed fine that day until I woke up at 3:30am with a SMASHING headache. I mean one of the worst migraines I could think of to date. I started crying and vomiting even after I was given morphine. Nothing helped the pain in my head. I had to go for any emergency cat scan to makes sure I didn’t have any brain bleeds because of my count being so low. But luckily everything was fine, must have been a side effect from the two treatments earlier the day before. I had to stay for five days of IVIG treatment and released from the hospital with a plan to go to the hematologist who treated me at the hospital. I was so grateful for him because he was willing to take me on as a patient knowing that I didn't have any insurance. I started taking prednisone with the intention of tapering down off it. I went for weekly blood counts and monthly visits with the doc. I continued to get my period like twice a month, sometimes not so terribly heavy, but still worse than my normal.
In April, I had to be hospitalized again, when I went to my regular appointment the doc told me that my platelet count was down 6,000 again and I had to check myself into the hospital, which was right across the way. I ended up doing another 5-day IVIG treatment and was released. I continued my weekly appointments and in May, I started the rituximab treatment. I had those infusions once a week for four weeks and tolerated them very well. I had also started birth control to stop my period, which seemed to interfere with my counts.
By the time June and July came around, we had completely tapered me off the prednisone, but my counts were still yo-yoing up and down. We waited to see if the rituximab treatment had kicked in, but my platelets were still dropping. The next step was a splenectomy. I was so done with steroids, my anxiety was through the roof, and I had to be prescribed Ativan until I was able to deal with it better.
In September, I had the splenectomy, was a bit of a rough recovery those days in the hospital after, but I got through it. I came to stay with my parents to recover and get back to normal. Since I was able to get Medicaid here so easily, I started seeing a hematologist here and my counts are still going up and down but not as drastically as before. The splenectomy has not really done much in my opinion to help my counts go up a lot, but I guess without any treatment right now they are staying out of the danger-zone for the most part. I hope that the holidays this year will be less eventful!
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