The Waiting

Just an update:

  • April 25 was the last day of antibiotics, for now.
  • May 2 – Blood cultures.
  • May 19 – Chest CT
  • The following week – the infectious disease doctor, the pulmonologist and of course, Dr. Tsai.

I have been on various antibiotics since the beginning of the year.  From Levofloxacin pills to Vancomycin by IV and Daptomycin by IV push, it is good to get off them.  I think.  I worry that the infections I had aren’t gone and will flare up and set things back even farther.  Is the cellulitis around the apheresis catheter healed enough?  Is the crud in my lungs, whatever it is, gone?  Will I ever get this damned transplant?

My white counts and neutrophils have been up and stable since I started Granix injections.  As Tony the Tiger says, “They’re grrrrrreat!”  That’s not quite right.  Maybe I could get Tony the Tiger to say, “That’s grrrrrreat!”  Maybe I can fight off potential infections now.

My platelet counts (18 on 4/25, up from 2 or 3) have been creeping up since I started getting Nplate injections.  Getting platelets wasn’t doing anything but wasting someone’s platelets and putting me at risk.  I keep hoping that the numbers keep going up with the injections.  I sometimes find that it is best to not read the literature about the drugs.  Scary stuff.

My hemoglobin counts – well, they go up and they go down.  Under 8 means a couple of units of blood.  This has been a once/week ordeal lately.  Still, better than multiple days in the week.  I wish Loyola had better TV station selections.  You can only read so much.  Loyola’s wi-fi and cell phone service suck too.  They know it, just don’t do anything about it.  Money, I guess, is the issue.

Me – doing okay.  Some days better than others.  Tire too easily. Trying to do more even when I don’t want to so I can bring up my endurance, which I think seems to be decreasing.  That’s a little troublesome; no, worrisome.  I don’t like it.  Cyndi doesn’t either.  All she can do is encourage me and it helps a lot.  She worries too, but keeps a lot to herself, which isn’t good.  We talk about it, which helps.

The day I stopped the Daptomycin, we went to Graue Mill.

at Graue MIll-2

Salt Creek

It was a short walk from the parking lot.  Sitting on the rocks was quite pleasant.  I just wish I could have done a bit more walking without tiring.  I need to do more to build up my endurance.

Enough grumbling.  This creature wasn’t grumbling, but taking life as it Graue MIll


3 thoughts on “The Waiting

  1. Ray – Just wanted to let you know that I’m thinking about you. Wishing and praying that things start to turn around for the better for you very soon. If there is anything I can do, please let me know. Feel free to call me anytime to talk, vent, or just pass the time. I want to help, but just don’t know how. Know that I’m here for you, in any capacity that you need. Linda Newlin


    • Thanks Linda. I appreciate the offer for help, etc. and have no good answer for now. Maybe later, after the transplant, help may be needed. My wife will need to be with me 24/7 for about 100 days. She may need a break or two during that time.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s