29 May 2009

I am deteriorating...

in the platelet department. On Tuesday afternoon I got a transfusion of platelets at Vanderbilt. Back at home on Wednesday morning my count was 3000, so I got another unit of platelets then. This morning my count was down to 1000. (For those of you who don't know, platelets should range from 150,000 to 450,000.) I look like someone took a bright red fine point marker and literally made hundreds of dots all over my skin (petechiae or petikiai). Normally those show up on the lower legs, but I've got them all over. Now I love red, but this is a bit much! And then there are the various bruises that just appear while I'm looking at them.

A platelet transfusion was first thing on the agenda today after I saw my doc's PA. And I asked if I would be waiting till Monday to get more platelets or did I need to get them over the weekend. He said I would wait till Monday. I just have to be careful. Very careful. And you know, I am actually feeling better than I have in a long time. If I just had some energy (I'm getting 2 units of red cells today), I could do some stuff - like cooking! But I can't take any kind of chances, much less by wielding a knife at veggies and such.

Donna, my CRNP at Vanderbilt, called yesterday to check on me. When she found out about how much my platelets had dropped between Tuesday and Wednesday, she said we really need to get the transplant going as soon as possible. Now haven't I been telling people that since the beginning of March? I was ready to have it by the end of May. But bureaucracy and paperwork have added another month to the timeline.

I am trying very hard to keep with the thought that "the universe is unfolding as it should", but sometimes that gets a little hard. I have to think about all kinds of things I never had to consider before. Little things like rubbing my eyes. That's a no-no. Especially since I had the retinal hemorrhage last month. (Go back to get that checked this coming Tuesday.) And big things, like no cooking. Except for the MDS, I am very healthy. Hopefully that will help me get through the transplant and back to a normal life without any significant setbacks.

My doc here thinks I might have gotten to the point where what little immune system that I have identifies the platelets as invaders and is attacking them. I only need to be able to maintain a few more weeks. Any and all positive healing thoughts would be greatly appreciated!

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5 comments:

ChristopherM said...

It is coming your way, Becky!

Lizzy said...

You got 'em, Becky!!

You'll enjoy this story~when I was working on our heme-onc unit, a new (very green) resident got the labs back on one of our leukemia patients. I think his platelets were 5 or so and he wrote orders for every one hour neuro checks. Needless to say, the nurses set him straight, and this didn't happen. I am glad to hear you're staying away from the knives this weekend. And I can only imagine your poor mouth! Take care, and I'll say an extra prayer for you~~~

bakinbits said...

Healing thoughts and prayers from me to you.....

Becky said...

Thank you all so much!

Lizzie, I do really appreciate that story. My brother has ITP. A while back he called and told me his platelets were 40,000. I said, That's great! He said, NO! That's terrible! Then I told him mine were 8000. All things are relative, I guess. :-) I'm glad you all set the resident on the right path. LOL.

Lizzy said...

I bet you'd LOVE to see platelet count of 40! Take care, my friend.