My recent appt at MDACC

[Guest guest]

Dear Group,

 

Well the last couple days have been kinda a blur.  I got to the clinic (MDACC)

at 7:30. Had my research labs drawn, ECG, then to an appt with an awesome Breast

Cancer dr. to consult about the BRCA1 gene I carry. We had a nice visit and she

agrees that right now CML is my major priority, but after that is under control

she feels some preventative surgery should be in my future.

After that appt I had my lab review, which showed very low platelets at 10,000

so they set me up for a transfusion at noon.  That all went very smoothly -

until I was on my way back to the hotel. I started to feel nauseas, chilled,

trembly, convulsive, but never lost consciousness.  I didn't fall just shook

uncontrollably. I made it to my room and was laying down when the PA called to

check on me - I explained to her what I was experiencing. After talking to her

for several minutes, she decided it was best for me to be evaluated for a fever.

So I had the front desk phone for a Taxi and went to the ER. Myself along with

several others sat for 4 hours before they put me in a room by myself because of

my neutropenia (anc 0.14).  They did a CT scan of my head to rule out any

bleeding from the low platelets causing the seizure like symptons.  I was

feeling much better but they still wanted me to stay for observation. So I did. 

I started feeling some

pain in my left leg which was very uncomfortable but after some fluids through

IV it faded away.

Around 3:00 am they decided to give me more platelets so by 4:00 am I was

receiving a single donor of platelets.  (Thank you to whoever was kind to

donate!!!)

They substituted the benadryl with a hydrocozone ? premed. My PA thought maybe

it was a reaction from the benadryl that brought me there so they tried

something different.  However, after the transfusion I still experienced some

mild chills and trembling but nothing like the previous episode.  No fevers.

Around 9:00 am I was released back to my hotel but Dr Cortes wanted me to stay

another day and start taking 3 different types of antibiotics - for viral,

bacterial, and fungal - for at least 24 hours before I went home. So I called

the airline and it all worked out ok with some extra cost.

I took a nice long nap today and am feeling pretty good. My hemoglobin is also

low at 9 so am feeling a bit more tired but after the long night, it may take me

a couple days to get caught up again. 

 

Has anyone experienced anything like this from a platelet transfusion? I have

received red cells, but this was the first for platelets.

 

God Bless you all,

Jackie S.

 

P.S. I also met another lady who was Day 1 of cycle 1 for the AP24534 drug. She

was around 70 yrs old and has been in alot of bone pain since April. She was on

Sprycel. I wanted to spend more time talking to her but because of all my

unforeseen interruptions I wasn't ablt to reconnect with her. I had left my

email address, name, phone #, with her so I hope she gets in touch with me. I

was concerned about her overall health. Her daughter was with her who was taking

very good care of her. I'll let you know if she calls me.