Monday, January 4, 2010

Oue CF Year in Review 2009

Okay, there is no other way to put it...2009 sucked in CF land!! I just looked over Gess's (extensive) list of EOBs from our insurance company to see the damage and it looks like he was either in the hospital or on IV abx more than he wasn't. Hospitalizations were in the double digits. He had lots of hemoptysis and two embolizations (one they were able to embolize, the other was an attempt but they couldn't find anything to nuke). He has his first (and hopefully last) seizure. Add abx-related hearing loss, and you have our CF year in a nutshell.

Interestingly, his PFTs have remained pretty constant during this I guess that is the upside. The sheer number of hospitalizations and exacerbations has me very concerned though. I am really not sure what to think about all of this, and quite frankly it freaks me out.

In addition to the physical difficulties, this has been a very trying year emotionally/mentally. Gess is trying to process through a lot of stuff, and I see that it is really wearing on him. I won't get into details since it is so personal to him, but it has been rough on both of us.

So yeah...add to that me losing my job, my dad getting dx with cancer, too many friends with CF dying...and 2009 was a really difficult year! And somehow, "difficult" does even seem remotely adequate.

I find that I am exhausted, physically, emotionally, and mentally. Gess is sick right now and on abx, so the trend is continuing. There are times when he seems ready to give up and it is hard for me to know what to do in those instances. Right now I just hug him and hold him and let him talk if he wants. still seems like it is not enough. I don't know what else to do.

I am also finding that I am really angry (and when I saw "really angry" I mean wanting-to-punch-someone-anyone-rage). I hate feeling this way, but it doesn't seem to be going way. I had a huge breakdown the other night (think uncontrollable sobbing followed by yelling and wanting to punch something) and that seemed to relief the anger for a bit, but I find it coming back. The only thing that I can think of is that I feel like I have lost myself somewhere in all of this. I am sure that my job situation is a big part of this...but that is a whole other ball of wax for another long blog.

So, to end...2009 was not good...and I demand that 2010 be better :)

Words I hate to hear first thing in the morning...

or anytime really..."Lisa, wake up, I need to go to the hospital." That's what I heard around 6:00 am this morning. Gess woke up because his heart was pounding. He checked his pulse at in was in the 140s, which caused the alarm and the wake up call. It's kind of funny how I can go from a dead sleep to action mode in mere seconds. Gess checked his pulse again and it was a bit lower, 129. His 02 sats were low...around 90/91% on room air (when he is usually 97%). Then he started to vomit. After that his stats came up a bit and his pulse slowed some. BP is high. He decided to go back to sleep for a bit and then reevaluate. I really hope that this was just some weird 10-minute episode and that we do not end up in the ER/hospital today.