I just don't know

Hey everyone my name is Amanda. I was diagnosed with ITP when I was 17 and it was pretty scary for me. I found out I had it when I was menstruating, the bleeding just wouldn't stop. I ended up having my period for 11 days and it was on the 11th day that I finally had my mother take me to the emergency room to see what was going on. Upon having blood taken, my count was 9k and I realize now how serious the situation could get if I ignored it. I am now 22 and I haven't had any problems with bleeding since a couple months after I was diagnosed. Even though I haven't had any problems, I wonder everyday if I am a ticking time bomb ready to go off at any moment. Everyday I have to think about I do because it's not like I can I have a blood test before I make a decision. I live in fear.

Amanda:

Stick with us and read. You will find that most people live just fine with ITP and lives go on normally. You are not a ticking time bomb! Even if counts are very low, that does not mean that you will die. Many of us have been under 5 and still went to work, shopped, drove....kept going.

When was the last time you had your counts checked? How were they?

My last blood test was a year ago and my count was 100k which is really good. I am very happy that they were as high as they were, I know that I am not going to die. My hematologist told me to go about life as normal as possible but also to be vigilant to my symptoms. Lately, I have been seeing the red dots again on my body, bruises I can't explain, my gums bleed, and on top of it my periods are so heavy they take 7 days to stop and I use overnight pads even in the daytime. What scares me the most is that it's uncertain when the low counts will come and go and I'm anemic as well. I definitely don't want to spend a few days in the hospital again, it sucked.

There are a lot more treatments now than ten years ago. You need to get a count done. I bet your count will bounce right back like it did last time.

You don't have to be hospitalized for low counts if you aren't having serious bleeding. Go to a hematologist who is familiar with ITP. Sometimes regular doctors and even ER doctors freak out with low counts, only because they are ignorant about this condition.
Erica

Yes, you're right I should go get a count done and see where I'm at. I'm hoping they didn't go that low, I will let you know how they are. Thanks for the advice Erica, it helped a lot! It's not easy being try only one in my family with this.

If you monitor your counts and use treatments when you need to, there's no reason to be afraid. Get a count done and do what you have to do. You'll be okay.

You should probably go to the doctor Amanda. Sounds like the ITP is back. At such a young age, there is a chance that it will go away for a long time again or forever. Since you have only had one incident before there are ALOT of non-invasive treatments to try. I know it is scary, but it will be such a relief than those red dots, bruises, and blood go away.

It is scary at first, but trust us, it will be OK!! Stressing about it day after day does not help, Mentally or Physically. I would have your counts checked with the symptoms you describe. Personally, I do not agree with the keep going comment with counts in the 5k range. I do not mean that one has to lock themselves in a closet with this count, but I do feel one should be a little more careful. At 4k I was told to stay put. That is just my opinion with that low of a count.

I will be getting my counts done later this week. I hope they aren't too low.

Dean - I was just trying to calm her down. It wasn't my decision to keep going....my doctor told me to. There are plenty of others who got the same advice from their doctors. Of course Amanda will most likely do what her doctor suggests, but low counts do not always mean that life stops. It all depends on the doctor, the patient and the symptoms.

Hey there Amanda! I am the WORST patient and went around with petechia and echymoses(the red dots and big bruises) for about 4 months before finally going to get checked out. My reasoning? I didn't want to be told I had something wrong with me. Be honest with yourself here- you know, deep down you need to go. I will say that my platelets counts tend to be lowest at the beginning, middle, then end of my period then they jump back up. So just because they are little lower than typical does not mean they will always be low. I will also say, on the more negative side that my platelets were less than 1000 for about 3 or 4 months while we tried to find ways to give them a boost. My doctor lovingly and jokingly told me not to ride a motorcycle without a helmet and I would be fine. I'm pretty sure her point was that not everything is in our control. My point is that you need to find out for sure so we can get you fixed up!

I think part of the reason why I get so bothered is because I don't want to hear that there's something wrong with me, I'm stubborn, and I'm also a medical professional so it's not like what they talk about is gibberish to me. Everything I learned while training to become an EMT has taken a toll on me and I can't help but try and go over and over in my head about things I could possibly do to help myself and think of the outcomes. I really wonder why getting itp just had to happen to me. I've had so many medical since I was born including bacterial meningitis, tonsillitis, colitis, pneumonia, like shit I can't get a break. Now I have itp and this is something I can't get rid of, it's with me for the rest my life. It was nice for the past couple years to go about my daily routine and not think about it, but now that I believe I may be having fluctuations in my counts, it definitely screws with my head.

Amanda:

ITP sometimes remits...you may not have it for the rest of your life. I thought the same thing, but I've had 7 years of remission after dealing with it for 8 years. You never know.

Sometimes you have to also spin the perspective and realize that things could be worse. There are so many things that can go wrong with the human body, and ITP is not one of the worst. It amazes me that nearly everyone I know has some sort of medical issue, young and old. It can happen to anyone.

I hope your counts are okay - did you have it done yet?

How you doing Amanda?

Sandi wrote: Dean - I was just trying to calm her down. It wasn't my decision to keep going....my doctor told me to. There are plenty of others who got the same advice from their doctors. Of course Amanda will most likely do what her doctor suggests, but low counts do not always mean that life stops. It all depends on the doctor, the patient and the symptoms.

I agree Sandi. Low counts does not mean life has to stop, but I feel with counts in the single k's, one should be a little more careful. That is just my opinion with my experiece and Dr's advice.

I felt the same way Amanda. I did not want to hear something was wrong with me. I was a healthy person and not knowing what was causing my Platelets to drop was stressful. When diagnosed with ITP I was relieved that it was not something more serious, but the diagnosis of ITP, meaning unknown cause, was not the best news either. It has gotten much easier over the years.