04 February 2009

Wednesday Medical Update

Yesterday I went to get labs and go to see my doc's PA. When I get a printout of my blood count levels, any counts that are OK are on a white line. Counts that are out of the norm are on a grey line. Unfortunately most of my printout was grey. Reds, platelets, whites and neutrophils are all low, as well as a bunch of other stuff. I knew the platelets were low because my gums and nose were bleeding all Monday night. I got a transfusion of those yesterday. Reds had dropped a lot. I was afraid of that because I didn't have much energy and it was kind of a struggle to breathe if I tried to do much.

The whites and neutrophils are all at rock bottom. Not even any tiny percentage of neutrophils. 0.0. actual count. 0.0 percentage. and my white count overall was 1.0. They don't let sit out in the waiting room. I go from getting my labs immediately back to a room where I won't be exposed to anyone. They clean all the equipment, including things like the blood pressure cuff, before using it on me. And of course I have to wear the mask.

I have now been neutropenic for nearly 2 months. Yesterday they also decided I need to take Neupogen shots again. These are daily shots that are supposed to help boost the white count by stimulating the bone marrow. Stimulating the bone marrow causes bone pain. (This is where you ache like you have a really bad case of the flu.) I also have some other side effects including bad chills.

I got home around noon from getting the platelet transfusion and immediately went to sleep on the sofa (housekeeper was changing my bed and cleaning my room) and wound up sleeping till Mike got home. I was having nightmares and he woke me up. The nightmares were actually one of those rounds of chills. He helped me get back to our bed and brought me tomato soup and cheese toast for dinner. Then I immediately went back to sleep. At 3:30a I am wide awake.

Today I have to go get transfusions of two units of red cells and a Neupogen shot. My appointment isn't until 9:30, but the blood lab people told me I could come early. It will take 4-5 hours there today. Tomorrow I get labs, Neupogen shot and see the doc. Will likely need platelets again on Friday, in addition to a Neupogen shot. I really don't like the side effects of these shots. Right now I'm not having chills, but I'm pretty achy. But hopefully they will work and my counts will go up. I can live with the side effects and I'm visualising Neutrophils like crazy.

The Exjade was supposed to arrive by FedEx yesterday, but did not. Perhaps it will come today. Tomorrow I am scheduled to have a ferritin test again. Ferritin is one of the few things where my blood counts are out of whack by having too much.

Thanks again to all of you who donate platelets and blood. I really appreciate it.

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Linda said...

Becky...I am visualizing like crazy...hang in there girl and try to conserve your strength...
L (((((hug)))))

maryann a.k.a lauren said...

Hi Becky:

My prayers are with you.

Things will get better I'm sure.

Please drop me a line when you get some time. I need to ask you something and don't have your email address. Here is mine:NYSEMD@yahoo.com

Make it a great day!

Ms. Val said...

Becky, I can't even to imagine what you're going though. And you are doing it with such a positive attitude. You're an inspiration to us all.

Becky said...

Thanks so much for your care and concern. I really appreciate it.

It seems that on the days I get a Neupogen shot in the morning that I have one really bad round of chills in the late afternoon, and maybe a few others that are not so bad. Today I only had the one bad round. And only two more shots to go this week. I can do it.

Linda, thank you for visualising with me. I'm feeling a little stronger after the red cell transfusions today.
Maryann, I just sent you an e-mail. Thanks for the prayers.
Val, I use the dishes for escaping. Hopefully tomorrow I will feel like making some tablescape photos with that tablecloth Chris and Marilyn are anxious to see.