Sport Purple for Platelets!

Today is National Sport Purple for Platelets Day! Please put on your favorite purple apparel to help raise awareness for ITP.

If you are not familiar with Idiopathic Thrombocytopenia Purpura (ITP), it is a bleeding disorder that is not completely understood. It is sometimes called Immune Thrombocytopenia Purpura because they do know that it is an autoimmune disorder. In people that have ITP, the immune system attacks the platelets. Platelets are what allows blood to clot. Without enough platelets, you will experience bruising, spontaneous bleeding, and could even cause a brain bleed.

People who are diagnosed with ITP may need to make drastic changes to their life. I will never forget the first night the on-call doctor called me with my lab results. He told me that my platelet count was "dangerously low" and that I had to go to the ER right away. He also told me to be very careful not to bump into anything because I could have internal bleeding. So, obviously physical activity needs to be limited.

But, there are tons of other things that can cause your platelet count to decrease. Everything from medications, to certain foods, to natural herbs, and everything in between. It can be pretty frustrating.

As long as the count stays high enough, you can live a normal life, but on any given day, the count could come crashing down and every little bump ends up with a huge bruise and you wonder whether you should go to the ER or not.

There is no known cause or cure for ITP. There has not been a whole lot of research on it until recently. They are now beginning to understand ITP and have been able to develop some new treatments. This is why it is so important to bring awareness and to help educate not only the general public, but also health care professionals.

Please join me in Sporting your Purple in support of ITP and other platelet disorders!

To find out more information about ITP, I recommend going to pdsa.org.

Steroids Suck!

I've been taking prednisone for the past 3.5 weeks for my ITP. The first two weeks I took 50 mg and although my counts went up, the side effects were terrible. I was then dropped down to 30 mg. I still am experiencing the side effects. They are not quite as bad as before, but I am still shaky, I get headaches, I'm very irritable, and sleeping is impossible. I've been averaging less than two hours of sleep a night. I'm sure that some of the side effects are actually from the lack of sleep. GRRR. I just want to fall asleep but my body does not want to!

The worst thing is that I have a feeling that my platelet count has dropped. I don't think it is dangerously low, but I have a feeling that it is lower than it should be. It's just a guess though since I don't see the hematologist again until the 31st. I'm just guessing based off some bruises that have appeared on my legs and my gums bleeding when I brush my teeth. I just hope that I'm wrong because these side effects suck if they are not going to help! I hate prednisone!

Super Platelets!

I was diagnosed with ITP right after Christmas this year. At that time, my platelet count was EXTREMELY low and there was danger of internal bleeding if I hurt myself at all. I went to a hematologist and was put on 50 mg prednisone once a day.

While on the prednisone, my petechiae cleared up within a few days and almost all my bruises have faded away. I knew that the pred was working, but I did not like the side-effects at all! It made me very jittery, I could not sleep, my legs were twitchy, and I got really bad headaches. But, I just dealt with it because I knew it was important to get the platelet count up.

Today, I went in for my two week checkup. I knew my numbers had to have gone up, just based on the fact that most of my bruises were gone, but I did not expect to receive the news I got. My platelet count had gone from under 20,000 all the way up to 306,000 in just two weeks! I was very surprised, but very happy about it. I never expected to have that great of a response.

Apparently, the platelets that I have are a little bigger than what they really should be, but that is probably due to the fact that the platelets are brand new. So, at this time I am not concerned about that at all.

Anyway, the doctor dropped my prednisone down to 30 mg a day for two more weeks. So, that's a good thing. I really would like to get off of it completely, but we have to go down slowly or I could end up at the same point that I started. I'm hoping that the side effects will be lessened with the lowered dose.

Yea for my young, fat, happy platelets! If I was an artsy person, I would draw a happy, fat platelet with a super hero cape and mask because that's how I am imagining them inside me! :-)

ITP What?

Last Friday, I was diagnosed with ITP - idiopathic thrombocytopenic purpura. This was something I had never heard of, yet I have found out does affect lots of people.

I have always bruised very easily, so when a new bruise pops up, I think nothing of it. I just assume that I bumped into something. I am an incredible klutz, so bumping into the corners of tables and things like that, happen all the time. The past few months I have noticed more bruises than normal and the some of them were HUGE, very ugly, and took forever to go away. But, I still just assumed that I knocked into something.

Then a couple weeks ago, I started to notice red and purple dots on my lower legs. It kind of looked like a rash. It was not itchy at all. They did not hurt and there were no bumps. They really just looked like lots of red freckles. I thought maybe I was having a reaction to the laundry soap or something like that. I tried googling the rash, but I didn't find anything that really fit my situation. Anything that came close always had other symptoms and I felt perfectly fine. Well, the dots started spreading. Now they were all the way up my legs, feet, arms, belly,  and back. It was not solid, but patches of them here and there. I still continued to ignore them. If it was summer and I saw them all the time, it might have bothered me, but it's winter in Michigan, so I am in long pants and long sleeved shirts all the time. Out-of-sight, out-of-mind. I wish I would've taken a picture to post, but I didn't think anything was really wrong.

Then Christmas Eve rolled around. I woke up around 6:00 with what I thought was a stuffy nose. I have allergies, so this is a common occurrence. I got up, blew my nose and went back to bed. I did not turn the lights on at all. When I got back into bed, my nose was still running. This time, I walked into the bathroom and I noticed that I actually had a bloody nose. My house does get dry in the winter, so I do get bloody noses on occasion. I turned on the shower and sat down in the bathroom to apply pressure to my nose and to breathe in the steam. In the past, my nose bleeds have always stopped within 5-10 minutes. But this one kept going strong. I realized that I had blood on my pajama top, so I changed my clothes. Of course, in the process of changing I had to let go of my nose and I proceeded to get more blood on the floor, the couch, the clean shirt, etc. I stripped the bed, as there was blood on the pillow and the sheets. Apparently, the bleed had started before I woke up. So, I threw everything in the wash, the entire time holding tissues to my nose.

By this time, the dog was up and wanted to go outside. The cats wanted food and I was trying to do my normal morning stuff. Luckily, I was off of work this day, or it would have been even worse. I am not someone who will just sit and do nothing, so I was trying to take care of everything and hold my nose and it kept bleeding and bleeding. I'm not talking about a trickle. It would start dripping every time I let go of it. I knew that moving around was probably making it worse, so I resigned myself to just sit down.

I decided to search the Internet for ways to stop nose bleeds, because everything I had tried to this point was not working. Of course I started clicking around and I found all these health issues that can be associated with nose bleeds. I try not to take the advice of Dr. Google, but it was in the back of my mind that something with this nose bleed was not right. I eventually googled something about a nose bleed that would not stop and rash. If the nosebleed would have stopped sooner I would probably have never looked it up, but it took 5 hours before I finally got it to stop, so I had lots of time to play on the Internet. Anyway, in the process I found a picture of petechiae. This looked just like the "rash" that had now spread all over my body. At that point I realized that the petechiae and the nose bleed were definitely related and could potentially be a problem. The websites listed the causes of these symptoms from things that were very minor, like a virus or could be something serious like leukemia. Other than these two symptoms, I felt perfectly fine, so I didn't think it was anything serious.

However, I did think about making a doctor's appointment. But it was Christmas Eve, I still had some shopping to do and some things to get done so I just stopped by the fast care inside my local Shopko. They were backed up and after I read the list of things that they did at that location, I did not think they would be able to help me. So, I just continued on with my day. I did not think this was an emergency, so I didn't even consider going into the ER. I just carried on with my day. I was terrified to sneeze or even blow my nose all day long, but the nose bleed did not start up again.

The next day was Christmas and I made up my mind that I would go to the doctor the next day. Again, I did not view this as an emergency. So, the morning of the 26th rolled around. I called the doctor's office. My normal doctor was on vacation for the Holiday. Her back up was also on vacation and the other doctor had no available appointments. But they told me that if I had a nose bleed for that long, I definitely needed to come in. So they made an appointment for me at an after-hours clinic.

At my appointment, the doctor confirmed that the "rash" was petechiae and explained that it was basically bleeding under the skin, but that there were many possible causes. So, she ordered a ton of blood tests to try to figure out what the cause was. I left the office not really knowing anything besides the fact that I was bleeding under my skin and she told me that if I got another nosebleed, I should go back there or to the ER.

At 9:30 that evening, I received a phone call from the on-call doctor. I was told that the lab had contacted him because my platelet count was "dangerously low". He told me that I needed to go to the ER right away.

I went into the ER, still not really knowing much about what was going on. When they asked me why I was there, I told them that the on-call doctor told me I had to come in because of my lab results. But, I still felt absolutely fine. They did an exam and documented the location of the patches of petechiae and purpura (that's the big, ugly bruises). They took more blood and told me that they were calling a hematologist. They eventually diagnosed me with thrombocytopenia, released me and told me to call the hematologist's office in the morning. I still didn't know anything other than I had a low platelet count. When I looked at the doctor's contact information, I noticed that his office was located in the Cancer Care Unit of the hospital, which made me a little nervous, but I figured that since I felt fine, there was nothing to worry about.

The next morning, the doctor's office actually called me before I even had a chance to call them. It was literally at 8:02 am. They told me that I needed to come in right away. So, I drove over to the hospital and found the Cancer Care Unit. When I entered, it was actually the nicest waiting room I have ever been in. I am used to the standard waiting rooms with a bunch of sick people staring at a TV or reading old magazines that hundreds of other sick people had already touched and spread their germs on. But this waiting room had coffee, juice, water, snacks, etc. I was greeted right away. The people there were all talking to each other and laughing. It just seemed very comfortable. However, as I looked around, all the magazines that were in there were geared toward cancer. It made sense because I was in the Cancer Care Unit, but at the same time it made me wonder what I was doing there.

After a short period of time, I was called. I had to do the whole weight, blood pressure, temp, etc. thing and then the doctor came in. After introducing himself, the first thing he told me was this was not cancer, so I should not be worried about that. He then just sat and talked to me for almost an hour. He went on to explain the findings of my labs. A normal platelet count is between 150,000 and 450,000. The day before, I had only 25,000. This is not terrible, but it is not good either. He said that chances are, my count was much lower on the day that I had the nosebleed (3 days prior). Everything else that they had tested for came back fine. He still wanted to test me for some additional things that were not yet tested for, just to ensure nothing was missed, but he was fairly certain that it was ITP. This diagnosis is given when they rule out all the other causes of this. He explained how it was treated, what I could expect in the future, complications, and things to avoid doing.

I, ultimately, was given a prescription for 50 mg prednisone for a month. Then depending on the platelet count, it would be adjusted. I had some more blood drawn to rule out the last of the possible causes and I made an appointment for a two-week follow-up. Then, I finally got to go back home to digest it all.

So, far things are going well on the steroids. The petechiae is all cleared up and the purpura looks much better. I still have a bunch of bruises, but I think I am doing better. It's kind of hard to really judge since I never felt sick. The one side effect of the steroids that bothers me is that I cannot sleep, so that makes me a little crazy, but I figure I can live with that for a month if necessary.

So, I guess I just have to wait and see what happens at the next appointment. Until then, I am not supposed to do anything that could potentially injure me or cause straining. And if I do happen to get hurt or get another nosebleed, I am supposed to go to the ER.

In the meantime, I have been able to learn quite a bit about this condition. The most useful site I have found is www.pdsa.org. I strongly suggest checking it out if you want to find out more.