ITP does not discrimate when it strikes its next victim. It affects the young and old, rich and poor all over the world. Dealing with this blood disorder is no easy task. The fear and frustration of not knowing where the roller coaster will take us next can be daunting.

This blog is for ITPers to express thoughts, feelings and lessons learned during their ride. Send your post to greta799@yahoo.com. We want to hear from you.

Thursday, August 22, 2013

Amber Yard emailed this to me so I could share it with you all. Her story reflects the nightmare many of us have experienced...

This is something I will have to deal with for the rest of my life and my nightmare started March of 2012 with a trip to the ER on a Friday. We just lost our house and was in the processes of moving. So every time we went back to the house to get something more, bruises would pop up. My whole left arm was black and blue from moving the fish tank (75 gallons) and under my butt was the impression of a tailgate. 

I was in the ER with no insurance and with platelets at 7,000. I was covered in bruises all over (I looked like a punching bag with hematomas on my upper thighs).The ER did not give me platelets or IVIG's (since I have no insurance) and sent me home. I could have died that weekend, and that is my reality. Platelets are suppose to be at 150,000 to 400,000.

I had 8 rounds of a chemo (which made my hair dead loss like crazy, so I had my husband shave it for me). It was a drug called Rituxan, and up to 100mg of Prednisone a day. My platelets last year topped out at 105,000. It is a roller coaster, up then down, I am at 32,000 as of last Wednesday.  I am with my 2nd Oncologist and I don't know what is next. My medical bills have topped out so far at $300,000 and that was due to all the chemo.

Went last Wednesday for a CBC and had a good feeling it was in the normal range. The next day I got the CBC back and I was not even near normal, under 50,000. Once again I am back in the danger zone. Since this all started I've been in pain and I work full-time and my husband is a full-time student (he keeps saying he will drop out and get a job (that is not an option, he is so close to finishing school). I worked, with the chemo, I really couldn't afford to take off. The stress of all of this is taking its toll on my husband and myself. I am keeping my fingers crossed, that is all I can do and not think to much about it.

I have been tested for everything under the sun and I feel like a pin cushion. We lost our house last year due to cut backs at work (at the same time I was diagnosed with I.T.P). We also sold almost everything and now we sleep on an air mattress. The only thing we have is each other and our 2 small dogs. They always helped when coming home from Chemo. But if it wasn't for the support of my husband I don't think I would have made it this far.

The end of May 2013, I was hospitalized with a count of 14k. I stayed the weekend and got IVIG's, that got my count up to 105k. A week later, I went for CBC and they had already dropped. I was put on Promacta for 32 months and my platelets never got above 40k. So now it’s August and trying N-Plate, I've had 4 injections so far and started at 14k and as of yesterday (8/15/13) I am at 35k. Every week when I get home from my injection, my 2 Chihuahuas comfort me with their warm little body's to soak up the stress. Like everyone has said, it is a roller coasted and you just have to hold on because the safety belt doesn't work.

It is still very hard to get up every morning knowing that I am the bread winner right now in my household. I wake up either in pain or more tired than I went to bed but I have to keep going. I am very lucky to have found Charity Programs in my area that have helped me with medical bills and medications. But it is still hard to live a normal life even though I try.  


Amber Yard
diagnosed 3/2012