Misery and Mirth

Oh No! My platelets are dropping

This morning I had my blood drawn again for my platelet count. Then waited around all afternoon for the Hematology office to call me, by 2:30 when I didn’t hear from them I called and informed them that my blood WAS drawn that morning and I was out of Prednisone, so I needed them to figure out what they wanted to do and call back.
Finally they called me back at 5:00 and told me they are reducing my prednisone to 30mg a day even though my platelets dropped to 123 x10^3/uL. They have to wean me off the prednisone because staying on it will make me ill in other ways. My platelets are below the “normal” range (245-445 x10^3/uL) but the hematologist said its still safe, that the normal range in typical people includes old and damaged platelets and because my body is destroying mine so fast all the ones I have are brand new, just made ones so they are very efficient and I don’t need to seriously worry unless I get below 60 x10^3/uL. But I still need to be careful to not engage in rough activity. So I had to pass up an invitation to Cedar Point:down:  , being banged around, high G-forces and all that are not advisable.

I had the Hematologist’s receptionist call my new Prednisone prescription into my pharmacy and I also called my pharmacy to have my Levothroid (thyroid medicine) refilled too. I will pick them both up tomorrow because I got my medical card in the mail today. I should only have to shell out co-pays on my medicines now, not pay full price anymore, YEAH!

Wednesday I will have my 2nd appointment with Dr.Winegarden, find out what further treatment options I am offered and what the results are from all the tests he did 2 weeks ago.  I’m trying not to get too worried that my platelets are dropping again, but it does scare me.   All the medications have such horrible side effects; periodic IVIg transfusions would be ok except my veins are so hard to get at that the technicians have trouble just to get the blood for my tests. But if I have to get frequent transfusions I could get an “implantable port” that would make things easier and less painful.

‘Ports are made of biocompatible material such as titanium, which does not cause the body to react. The hard case has a self-sealing opening, or septum-about the size and feel of a pencil eraser-on the side that faces the skin, through which a needle can be inserted. That opening gives easy access to the system that delivers medication to the veins.
A port appears as a small bump on the patient’s skin, on the chest or arm. Inside the body, a flexible tube or catheter reaches from the port into one of the patient’s larger blood vessels-giving the medication a route to the bloodstream.
Like so many advanced medical technologies, implantable ports not only improve care for patients, they also provide a more cost-effective way to access the veins than other methods. Experts estimate that the cost of an implanted port equals about ten intravenous (IV) sticks from the outside of a patient.’

http://www.advamed.org/publicdocs/implantable_ports.html

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