In a couple of weeks it will be my ONE YEAR anniversary with the AF Huntsman Cancer Center satellite office. Yes, one year! I have been going there EVERY week for ONE YEAR getting my arm stabbed and my blood sucked.
Why you ask? Low Platelets. What the heck are platelets you ask? I've learned a lot - I can help with that question. Platelets are created in the bone marrow. Platelets clot your blood so you don't bleed to death. Each of us damage our bodies every day by merely leaning on a table but because we have 100s of thousands of platelets which rush to our rescue we are free from harm. My problem is that my autoimmune system seems to think that my platelets are the bad guys....so it started to destroy them. This has been happening since 1993 - yep! But 2009 became the true year of the platelets.
(2 platelets - purple next to red blood cells)
To cure me... I've had two WinRho IVs - which is a 10 minute "push" or injection into your arm. The astounding cost of this procedure was $19,000 x 2. Oh.. this didn't work. Then I had (after Rusty's wedding when my count was 4) One 3 day IV of gamma which lasted 5 hours each day... AND I got very sick the third day. Cost - $17,000. This too, did not work. I was then put back on high doses of prednizone... didn't work. And what was suppose to be THE LAST resort... removing of the spleen - Cost $9,000 - did not work either. One month after this surgery my count dropped once again to 1 and I was told that I could "spontanteously bleed to death". 120mg of prednizone were given to get me through the holidays. We're done with the holidays and my count has crashed again. I went from an all time high of 256 two weeks ago to 29 today. All I've got from prednizone is a jolly round face and belly with 10 new pounds.
I've done some research and not to be morbid or anything BUT... hey no surprise here.. people DIE when they can't clot. I'm starting to have this claustrophobic desperate feeling. There are no answers out there and no one knows what to do.
PARTY ANYONE?
Friday, January 29, 2010
Happy Anniversary - NOT!
Posted by Lucky 7s at 8:49 PM
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5 comments:
This blog was truly insightful. How come your platelets go up and down so much? They need like a boot-camp or something, you should probably send them to one of those wilderness camps. I heard they really work wonders. But seriously... how come they keep going back to being so low? I always love a party, but not a platelet part. I'll keep you in my thoughts, well even more than usual.
ugh, I hate it. Sorry momma! They will find something that will work for you!!
Randy told me the news last night and I'm so sorry. I can only imagine your level of frustration at this point. I think finding a new doctor may be the next step. Maybe not, I don't know, I just want you to be better. I'm so worried about you. I love you and hang in there. You are one tough chick!
Aunt jer,
yuck. i'm so sorry to hear this! thanks for explaining & trying to keep a positive attitude. you will be fine. i will keep you & your platelets in my prayers :) hang in there! xo-hay
I'm with Annie, I think it's time to find a new doctor! A second opinion never hurt anybody...and sometimes a thrid or fourth can be helpful too! Feel better soon. You are a tough cookie, so you will get through this!! Hang in there and I'll put you in my prayers!
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