I am so hoping you can get some rest, Laura. What an ordeal. Unimaginable.

Plts again tomorrow....so about every 4 days needing platelets.
HGB in 9 range

Much more rib pain today.

So sorry, Laura. I really hope you get some relief soon!

Today I was so very, very tired. I basically slept the ENTIRE day except for the drive to the hospital and back and when the nurses needed to wake me up for this or that. Otherwise I was asleep the entire time. I woke up not too long ago.

I forgot to mention yesterday that I also got 40 meq of Potassium iv, which took four hours.

I didn't write my labs down today because I was too tired...after the red transfusion yesterday my HGB came up to 10.something. I needed plts today (like clockwork every four days). White count remains good but I am also on Prednisone....

Potassium was still a little low but going to keep an eye on it and just try and take oral (20 meq) three times a day.

The frustrating thing is I keep getting a different story in regards to the infection but I think I finally got it all sorted out today.
The gram negative infection was in my RED lumen and bloodstream (NOT purple lumen). The original cultures did not grow gram positive so they stopped the vanco, which is so nice because it means no 50 mg of iv Benadryl prior and 2 hours less I need to sit there (twice a day). So I just get the Cefepime twice a day through the red lumen and they push that so unless I need transfusions or whatever, it is a very fast apt. The cultures they redrew yesterday showed the red lumen still growing the gram negative. But so far no growth in the purple or bloodstream.

Something always comes up to push other things aside....so the skin stuff has been pushed aside for now....

The main worry is how my counts are not recovering but worse.

I think today was the 7th plt transfusion since April 2nd....to tired to really figure it out fully right now.
And yesterday was red blood cell transfusion one.

I was supposed to see my primary today but as I was leaving station 94 to head there my nose started bleeding so they wanted me to stay for the plts instead. So I will see her in the morning after my station 94 apt.

I took the lazy way out again and copied my caringbridge post below.


I guess I am at a loss to my labs and what it means....they obviously aren't recovering. I see the main BMT at Mayo on Wednesday. For now, it seems station 94 (outpatient BMT) refrains from commenting too much. I want to know what it means....another transplant?....what?....

Does anyone rememeber the name/author of the book in regards to taking long term prednisone?

Still getting plts every four days....

Laura

I'm so sorry to hear this, I'm at a loss.

Hopefully someone here will know the details of the study/book...

You may be thinking of "Coping with Prednisone" by Eugenia Zuckerman and Julie Ingelfinger, MD. It's excellent.

I hope you find answers soon!

Yes!!! Thanks!!! Laura