Traveling up the east coast- Savannah, Hilton Head, Myrtle Beach, DC, Vermont, then inland-PA- with the ultimate destination- a visit for my Cal 101 clinic with Ohio State University... Home scheduled for today...back to Quincy and the granddaughters. We left July 9th...
oops.
Seems I may have something called PCP pneumonia. I am a guest at the St James Resort (James Cancer Clinic-OSU)with an oxygen hose draped around my head, IV's full of antibiotics chugging into my chest, and an O2 monitor clipped to my toe- typing with it clipped to my finger was not working.
Best laid plans. Denise and I had a great time- I felt great, up until several days ago- developing a cough and chest congestion. I had my CT Scan, and saw my coordinator on Friday for my two month supply of the drugs. I wound up admitted which strangely enough was a good thing. I had several bouts of 102,7 degree temperature, and until today felt pretty lousy. I would hate to have that happen on the first night of our two day trip home, roughly around Cleveland Tennessee.
My main Doc, my Guru, was on vacation last week- I emailed him last night and he emailed me immediately and came in to see me today... why I come to OSU- world renowned Doc- dropping in to see how I am doing in jeans and a golf shirt...
I am feeling pretty good today- still having some occasional coughing, but things could be worse.
Well that's the update...more when I hear it.
God Bless,
Sorry to hear about your "change in plans" but glad everything worked out okay. Hope to hear you're on your way home very soon!
ReplyDeleteThanks Sally- I would like to be on my way as soon as possible.
ReplyDeleteRandy,
ReplyDeletePCP is beatable. I am on Septra DS M-W-F to prevent it due to my suppressed immunity from CLL and cyclosporin for ITP. I know people with CLL who have had PCP and are just fine now though they take some sort of prophylaxis to prevent reoccurrence.
CAL101 is not supposed to suppress the immunity like most chemo used to treat CLL so it is a good choice in these circumstances
I think OSU is one of the best places in the world for anyone with CLL
Stay strong. We are in this together
Brian-bkoffman.blogspot.com
Thanks Brian. The PCP ruling may have been premature- the cultures have not shown evidence yet, I had one drawn 72 hours ago, and another nearly 48 hours-a fever spike necessitated the second look. I have had a cople of chest xrays- and I am doing another test to determine if it is a blood clot.
ReplyDeleteI hope to get back on the CAL 101 trial as soon as we get control of this... it has done wonders for me.
Having this occur here was a mixed blessing. Dr.Byrd and the staff at OSU are my heroes. I am confident we will get to the bottom of this...
Keep on the battle Brian... I think a cure is right around the corner...
God Bless
Praying for you Randy.May God and Dr. Byrd work together to get you back to Cal-101 soon.Hoping those lungs clear ver quickly!
ReplyDeleteGod Bless,
Deb
www.cllcfriends.com
Well they have ruled out a blood clot- I had a PQ Scan...The suspected culprit is now Klebsiella Pneumonia. Very treatable- but may take a week or so.
ReplyDeleteI have not seen any improvement off the Oxygen, so I remain tethered to an oxygen mask and a warning clip on my finger. They set the flow to 13... They started me at 6.
Thanks Deb...
ReplyDeleteRandy...Praying for you. I very much enjoy your blog.
ReplyDeleteTrisha 52
Thanks Trish...if I am stuck in here for a couple weeks maybe I will post more. Thinking about flying Denise home. The grandaughters are having massive Gramma withdrawals.
ReplyDeleteSorry to hear about your latest setback. Hope it is only a small step backward.
ReplyDeleteThanks for the update. I am thinking seriously about a consult at OSU, so I appreciate you writing about your experiences there.
I highly recommend this place/Dr. Byrd. I can email you the telephone number for Doris- who schedules Dr. Byrd's appointments.
ReplyDelete