Tuesday, April 23, 2013


I saw Dr. Bibb today. He is NEVER on time and I HATE that!! However, he is a fantastic doctor so I guess he's worth the wait. I got to the office about 930am I got labs drawn and then the rest was an all too familiar waiting game. He FINALLY came in to see me about 1130am! He apologized countless times. Said I was the sweetest patient he has! Ha! Little does he know!! Ha ha I think he is buttering me up!! :)

I had my platelet transfusion on Thursday 04.18.13 @ Banner Good Sam. I was suppose to get labs at Bibb's office on Friday to see what my count was the day after my transfusion. Needless to say that didn't happen as Bibb's office dropped the ball! That's even AFTER I called his office twice! Whatever!!! just another reason to go to CTCA. I went in today to get labs and to see him. Here's the news I got...

A) My platelet count was 37,000 on Friday (I had labs drawn in Dr. Rubin's office)
B) My platelet count was 37,000 again today. When they were drawn in Bibb's office.
C) I have ITP...or he is 99% sure I do.

We now know I have ITP based off the labs. Since I got transfused on Thursday and my labs were 37,000 on friday. This tells us my body is destroying the platelets. Getting a unit of platelets normally my labs would be 140 or higher. Mine are not. All those platelets I got were destroyed in a matter of a day.

Where do we go from here? All of my doctors are fully aware I am going to CTCA on Sunday. Our plan for now is to put me on steroids. Prednisone to be specific. So the weight I'm trying to get OFF is going to be even harder. Bibb has me starting those today and I'll stay on them until I am back from Chicago. This is for one reason and only one reason...to make sure my platelets stay at least 37,000 or higher while I travel to Chicago and back.

Upon my return (whenever that may be) I am scheduled for IVIG infusions on Tuesday May 7th and Wednesday May 8th. I'll have more labs drawn on Tuesday May 7th as well. I'm currently scheduled for Thursday May 9th for a bone marrow biopsy (BMBX) at Banner Good Sam. In hopes the IVIG brings my platelets up enough to do a BMBX. We haven't yet scheduled the lung BX yet, we want to get my platelets up before we do so.

IVIG for for those of you that don't know what that is I'll explain it to you. IVIG=Intravenous Immunoglobulin. It's a blood product that is administered intravenously. It contains pooled, polyvalent, immunoglobulin (antibody g) extracted from the plasma of over 1,000 donors. IVIG effects last between two weeks and three months. Side effects include: headache, dermatitis (peeling of skin on palms and soles) infection (such as HIV or Viral Hepatitis) pulmonary edema, allergic reactions, acute kidney injury, venous thrombosis, and aseptic meningitis. WOW right!?

So that's the plan. We leave for Chicago on Sunday and I got the all clear to fly! So we are all set. :) There is a chance I won't be back for the relay for life on May 4th. In that event I hope you all will still attend and do me proud! :)

1 comment:

  1. Well goodness...i hope you have a safe flight and i hope CTCA can give you a better idea of where to go w treatment. LOVE YOU!