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.
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.
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
Amber,
ReplyDeleteThanks for sharing your story. It is so aggravating to see a fellow ITPer suffering like you are. Are you in any of the Facebook ITP groups? They are a big help and let you know you are not alone...
Also the PDSA has a great website with a forum where you an get a wealth of information. www.pdsa.org
Yes, I'm on most of the FB ITP groups, they are a big help.
DeleteHi Amber I to have ITP and understand your story all to clear,The ER should have sent you home with at least steriods and an Appt..to see a Hemo, to get you on a treatment plan and maybe you would have time to understand ITP a bit better and get insurance ! or find a way..to help with the medical bills.a lot of my friends do Ritx. and find it works after a few months ..some weeks others it takes a lot longer to kick in ..Im sorry you have Lost your hair?..I have never heard of that!..... I guess the one thing we have with ITP is its unpredictable. But get to learn your symptoms..and signs the way you feel it will make your Journey a little easier..to know you really are not alone!! Theres a lot of us out there:).
ReplyDeleteRitx has been know to have dead hair loss and mine was every where, so I went ahead and shaved it. Got my counts today and was at 22k last week 35k. It was my 5th N-Plate injection today. I sure hope this works!
DeleteAre you taking Steriods with Nplate!.......seems a bit low..but ..I havent tried Nplate......counts can Jump up and down:(..Hope you find whats going to work best for you..soon
ReplyDeleteNo steriods. Hope I find something soon that works also.
ReplyDeleteWhere you Offered a Spleencetomy?..
ReplyDeleteFirst doctor talked about it but I'm very attached to my spleen. So it is not even an option in my book. The odds of it working are not good, I've talked to a lot of people that have done it and did not work.
ReplyDeleteThis week 15k so I am dropping on N-Plate. Seeing the doctor next week and going to talk to him about getting off the N-Plate and doing the Rituxan again. It lasted 6-8 months and I didn't have any of the side effect like I'm having with the N-Plate. I would rather do 4 weeks in a row and last for a couple of months then going in weekly for CBC and injection. I filled out some paper work online to speed up the process of getting approved for the Rituxan. My plan is to stop the N-Plate and start the Rituxan and I don't know if I can start not next week but the week after on Wednesday am. And I don't know if they will do it in house or at the hospital, either way it doesn't matter with me. I'm sure I'll have to do another round of Dex to get me to that Wednesday.
ReplyDeleteCounts today 105k, I do great with dex. The doctor talked about taking my spleen out, this is my second doctor. The first one jumped the gun and talked about it the 5 appointment. I have seen this doctor since the first of the year. We have tried lots of medications. So I am getting counts re checked next Wednesday and starting Rituxan (again) the following Wednesday. Doctor said he doesn't like the autoimmune suppressants drugs.
ReplyDeleteSo here is my problem, right now I am approved at 100% with the hospital. So they will cover everything but the expense of the surgeon ($1000-2000) which I can cover. The charity program end 1/26/14 and if I have insurance by then the co-pay will be more than the cost of the surgeon. And I am sure I will have to wait 6 months after getting insurance to have the surgery.
I can re apply for the charity program, but the only way is to go to the ER again. So that mean I would have to let my counts drop and go to ER. Then they will put me in the hospital and get my counts up then send me home. It takes time to get approved and that is if I get approved. My husband has found a job, it is not much money but it helps. So I don't know if I will every be able to get the 100& again.??
What to do!?!?!??
Ugh..... my heart goes out to you. I have seen a lot of fundraising for ITP for research etc. However, it seems to me lately that because of the cost of medication, the inability for people who want to work but can't work because of their condition, I would one day like to see fundraising that goes directly to patients who are in financial hardships because of medical cost. Just a thought
ReplyDeleteThanks for your site
I agree Beckie. Without insurance many Americans are stuck between a rock and a hard place. We do need fundraising for patients.
ReplyDeleteVery true! I was in the hospital again for the second time this year. Counts at 1k got IVIG's and platelets. More talk about taken my spleen out again. Finally got my count to 29 & 30 getting round two of Rituxan on 9/18 and re count. Hoping for good numbers, I would hope so with all the steroids and IVIG'S.
ReplyDeleteHi, I've had 3 ITP attacks wherein my platelet levels have dropped below 5k everytime. Its important you try to figure the cause while your undergoing treatment. Was it some drug that you took? Or a viral infection? Or were you very stressed? ITP can be triggered by these 3 causes mainly.
ReplyDeleteI know it may sound gros to most but what worked for me the last time was Urine Therapy and Naturopathy which is combination of diet, homeopathy and mind healing. Having potato skins and apple soup can really help besides. If you wish u can contact an excellent doctor called Dr. Mayank - +912224168130 from Freedom clinic. Under his guidance and diet I have been under remission for long.
Hope u heal. May god bless you always.