Hi my name is Tim and yes, I am a bleeder...

First, thank you to this community.

Second, a little backstory. After idiotically thinking that I had ITP permanently "beat", I recently found myself back in the ER for the last five days with a count of 1. Yes, 1. After much panic in the ER doc and staff, the staff gave me my "oil change" as I tell my little kids (IVIG and steroids) to get my levels back up to a level I am now typing from home.

For those of you who are new, scared or worried (just like this idiot was three years ago), may I offer you some advice from a man with 5 kids under 13, an angry Irish wife from New Jersey and a penchant to violently bleed all over keyboards at a moments notice.

1.) Read. Learn. Listen. Study. Ask Questions. Decide for your own damn self.

2.) Feel your body changing as a signal that something may be wrong.

3.) HAVE A POSITIVE ATTITUDE. When you are stuck in the oncology ward/floor with everyone who has cancer, think to yourself... "Some of these folks have drawn the Ace of Spades, I have just drawn the 4 of diamonds. I should be happy and live..."

4.) Humor saves the world. Smell the roses, hug your kids and tell your spouse (mom/dad, etc), that they rock and you love them very much

5.) Yes, you won't be able to juggle chainsaws anymore...

6.) Yes, you are going to live with this condition / disease (most likely) the rest of your life.

7.) DEAL WITH IT. NOW.

8.) Your friends, co-workers, local barber and Sal the pastry chef down the street will think you are sick and going to die when they first hear about this through the grapevine. The sad hushed tones. The wistful eyes. The hand on the back seeing if they can help.

TELL THEM TO F**K OFF. You are a bleeder. Just like Rocky Balboa (or Chuck Wepner, if you believe the stories). Guess what? You will be OK. Ask for support when you need it (and you will).

So, in conclusion...

You are a fabulous, marvelous individual with a loving family, long full life ahead of you who happens to bleed like a stuck pig.

While I have lurked for a while, I had to join this fantastic group of people. Listen. Learn Ask Questions. Your fears will subside as a new journey awaits you for the rest of your life.

Tim

Hello, Tim! I'm glad you decided to speak. You sure sound like you've been here a long time.

Do IVIG and steroids work well for you? What caused your last remission? I hope your counts respond well.

ITP isn't always for life. Many people go into remission and stay there. I had up and down counts for 7 years, then went into remission. It's been 11 years since I've had to treat. I don't expect to see ITP back again, but if it happens, I'm fine with it.

Hey Sandi !

Love your advice you have doled out here over the years.

To date, I am an IVIG / solumedrol in IV (hospital) and crap load of Presdnisone (100-140 mg initial dose thereafter dosing down to zero).

To date, I am an immune system "reboot" guy followed up with years of "remission" followed up with waking up one morning looking like I have been in a car crash. As my doc said..."Some are 3 days in remission, some are 3 months in remission, some are 3 years in remission, some are 30 years in remission..."

I truly hope your 11 years definitely extends to 30 or more.

Tim

How long is your expected taper?

Update:

Had to be readmitted after the platelets dropped to 1 (yes 1) again 3 platelet transfusions, 2 full nose packings, 5 days of IVIG, enough steroids to kill a small horse, 50mg of daily Promacta, one round of Rituxan and a partridge in a pear tree, the doctors finally released me back into the wild. Last count was 225.

Fast forward 4 days later. Count is 52. Second round of Rituxan, continued Promacta, 80mg Pred.

For those of you who are new (or just need some reassurances), reread Steve's comments in the sticky.

"Another good tool you will pick up as you walk this path is to learn the truth about counts: you will drive yourself crazy if you follow them too closely. I am not suggesting you ignore or skip counts. Counts are an important piece of the puzzle, but they are only one piece. Don't fixate on them too much. Learn the truth that there really isn't much difference between a count of 25 and 30, or 75 and 100, or 150 and 200. Learn that, for most of us, a count over 30, or maybe even 20, is just fine."

Let me leave you with a funny story:

As a calmly walked back into the ER at 6am after pre packing a bag, changes of clothes, the meds, a phone charger, etc., I told the staff I needed my platelets checked and my nose was bleeding. 22 HOURS later in the ER, I finally made it up to hematology at 4 AM to a bed...What was the LAST thing the ER doc did before sending me (finally) upstairs? He brought around three trainee med students to look at the guy with no platelets...As they are poking and prodding, I suddenly felt the urge to go all Brad Pitt from Fight Club

{ www.youtube.com/watch?v=vET7Ef3RNMA } Fast forward to 2:14....

I resisted the urge because...well...because spewing blood all over the ER staff would give us ITP'ers a bad name!

Smile! It could be worse...you could have bad hair!

Tim

Hey Tim, I'm smiling cos at this very moment I do have bad hair!
Thanks for your honesty & humour, I love your attitude. It must make it easier on your loved ones if you're not freaking out. Sounds pretty full on though, how are you now? Hope your levels are up and you've stopped bleeding on your keyboard
Erica