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