Thursday, October 3, 2013

...does discharge equal cured?

I am SO happy to be home. But I still have pneumonia and I will for awhile. But right now - I'm just happy to recover at home. 

Thanks Reed family for decorating

home with Tate, snuggled up in a blanket from Rachel

Unless you've spent an extended amount of time in the hospital, then I can honestly tell you that you have no idea what it is like. 

Being in the hospital, you lose all sense of privacy and independence. This stay, I have 10 leads (stickers with wires) attached to my chest monitoring my heart. One was attached to a box that stayed in the bed (and I could unhook), and one I had to carry around with me (if I got up to go to the bathroom). This stay, I also had a pulse ox hooked to my finger or toe (which measures the oxygen in your blood). Plus, I had a picc line** attached to an IV pole which was then plugged into the wall.

So, I'm in the hospital and in pain - as in seriously spasms in my back, hooked up to a pain pump that administers constant medicine, plus I can push a button for extra. Every time I want to go to the bathroom, I have to call a nurse, get everything that can be unhooked, unhooked, and then roll myself out of bed. 

Luckily, my pain was under control after a few days - but due to the machinery I was hooked up to (to monitor my heart and oxygen, etc), I required assistance EVERY TIME I wanted to get up. Not to mention when I dropped my IPhone under the bed... can't reach that- had to buzz for Erin. It feels crippling. 

**A PICC line is a peripherally inserted central line - it's a small line inserted into my arm, tunneled into a larger vein by my heart. When getting high dose antibiotics or a lot of blood draws, this helps save my smaller veins (which are already pretty shot from chemo).

They diagnosed me with nocardia pneumonia, which is fairly rare (Columbia sees about two cases a year) - but not uncommon for someone like myself who is immunosuppressed. We've been told that this type of pneumonia can take a long time to get over - I could be on antibiotics for months to a year. One of the main issues is right now I am on three antibiotics (two are IV and one is by mouth). 

a fridge on drugs

You must be thinking - you're doing IV antibiotics at home? Well that's an advantage of the PICC - it can stay in and open for a longer time than a normal IV. We have a visiting nurse who comes once a week to check the line. Mom learned how to administer the drugs and we got set up on a schedule which is four times a day (and does unfortunately include one round at 2 am and one at 7 - but it's the best we can do for now). Eventually, a lab in CO that is working on my case, will figure out the exact amount of which of the antibiotics (or exact combination) will fight the nocardia the quickest. For now, we blast my body with all of them. When we know the exact amount, the hope is I can take them all by mouth.

IV drugs in the family room

To answer some questions I've been getting:

  • It feels great to be home. 
  • I'm still sick - it still hurts to do lots of normal things, like bend down and climb stairs
  • I'm going to be sick with pneumonia for a long time, potentially a very long time (months-year)
  • The lines coming out of my arm are not the same as the port I had, but are similar
Ultimately though, it's pneumonia and we'll beat it. And we'll figure how how to beat it while fighting the cancer - something I am sure my team is hard at work on. 

And I've gotta say, if you're stuck in the hospital - Columbia is the place to be. I've got all my friends (cough, cough, nurses there) who take care of me, bring me special food, give me back massages and are members of the 'hair tie' club. 

And if you've gotta be home, well nothing is better than company like this...

my little man


Scott said...


Glad to hear you made it home.Sometimes it seems like when you're in the hospital, other things make you more sick, and slow down getting you well. I had a picc line for 7 weeks a few years ago when I had an infection from a hip replacement. It sucks, but when you think about it, being able to take care of it yourself is good. You just can't take a proper shower, and boy was I ready for one. In my case, the infectious disease doctor used an antibiotic that caused me to have a seizure, which really sucked. I had had a few in the last year due to my brain tumor, but we thought they were under control until then. Keep fighting hard and smiling, and I'll check on you again soon.


ernest said...

Glad to see you're home and feeling better! Dr. Tolani