Saturday, July 28, 2012

End Streak


I imagine this is as good of a time as ever for an update.  Picking up where I left off last time with a terrible Thursday:

Throughout the weekend, I continued to have pretty severe episodes of hemoptysis, culminating in me losing control of all bodily functions on Sunday. ;)  The plan was to get in touch with my doc on Monday if it happened again.  Unfortunately, a spontaneously-blocked port expedited this situation.  First I called my home healthcare company that was delivering my IV meds to see if they could send someone.  Believe it or not, despite being called "Visiting Nurses Association", they did not actually have any visiting nurses to send me.  I then I tried to contact my RN from Children's, who had given me her cell phone number a couple years ago since I "introduced her to technology".  Apparently, that number was outdated.  I proceeded to contact the clinic to try to get my doctor paged.  After nearly 3 hours of attempting to page on-call doctors and my own doctor, I finally got one to call me back, who really did nothing to help other than guide me to the ER.  I spent SIX hours in the ER that night, all for a simple 5-minute needle change.  It was something I could have easily rectified at home had my home healthcare company sent me a dressing change kit like they should.  I mentioned to several people throughout this process that I had been having hemoptysis all weekend, but they still seemed more concerned with the blocked port.  I finally got home at 2:30 AM, finished my late antibiotics, and got ready for three hours of sleep.  At this point, I hadn't had any hemoptysis episodes in almost 24 hours, so I was hopeful.

Wrong.  For the third straight night, I was awoken at 5 AM with the familiar bubbling in the chest cavity.  I contacted my RN once I got to work that morning, and she called back and told me I should get to the ICU immediately.  I tied up a few loose ends to make sure I could work remotely from my hospital bed, headed home to pick up a few things and make sure Ivan was taken care of, and headed to the hospital to be admitted to the ICU.  A poor decision was made when I decided I could walk from admitting to the ICU instead of accepting the offered transport services, and I started having hemo again on the journey there.  Luckily I had a half-empty Mountain Dew can in which to spew my essence of life.  I spent the next few hours being asked ridiculous questions, such as if I felt threatened in any way.  My parents came up immediately, as well as a couple family friends to keep them company.  A team of doctors came in and basically laid out the game plan: I'd have a CT scan that evening just to compare to my last CT scan from like 6 years ago.  I would then have a bronchoscopy to see if they could find the source of the bleeding.  Finally, I would have a Bronchial Artery Embolization to clot the bleeding.  The CT scan was taking forever to get setup, so they decided to do the bronchoscopy first.  They started to prep me for the bronchoscopy, and that was essentially the last coherent moment I had for the next 24 hours or so.

The bronchoscopy ended up causing more bleeding, which necessitated putting me on the ventilator.  I do recall how much this bugged me because of how uncomfortable it was to swallow.  I have absolutely no recollection of the BAE, but I know they did it because at some point, I woke up with tegaderm on my groin and a foley catheter.  There were three pretty serious tears in the bronchial artery, which they clotted up.  They did another bronchoscopy while I was vented to ensure the bleeding had stopped, and then devented me.  I recall very few moments after this.  I remember realizing that a lot of time had passed when I asked my mom where my dad was, and she told me they had gone home and she had come back again.  I recall group Skyping with some people and proclaiming that I was going to take a piss in front of them.  I recall being woken up four times on Wednesday night to remind me that I was going to be moved to a regular room.  And then they wheeled me down to a regular room in the middle of the night and I was set for recovery.  I spent the next day and a half on the computer, as always, working remotely and Facebooking.  My mom stayed overnight at my apartment to care for Ivan, and left on Thursday.  I basically just relaxed, and peed a whole lot.  It was my first time staying at that hospital as I haven't been inpatient since 2003 (RIP to the 9-year streak).  I actually enjoyed my stay for the most part, except for the fact that they wouldn't use my port (even despite the fact that it was already accessed) and instead opted for a peripheral IV to continue my antibiotics and keeping me hydrated.  I packed up my things and was discharged on Friday afternoon.

So I'm back home, blood-free with my PC back up and running [refer to last blog] and ready (or not) to go back to work on Monday.  Aside from a nuisance of a sore throat, I'd say I'm doing alright.

Friday, July 20, 2012

The Parting of the Red Sea

So it looks like I have quite a ways to go before I reach the elusive 2.0L.  At my appointment yesterday, I blew an all-time low of 0.68L (18%).  My gut feeling (pun intended) for my low numbers was because I was feeling rather bloated, which is ironic as I've been on a 2-month stretch of 100% enzyme compliance for the first time since I can remember.  The theory is that I'm constipated because I'm dehydrated, which makes sense as I've had dry mouth and hot spells lately, and I just generally drink at a snails pace.  Somehow, I manage to make a single can of Mountain Dew that I open at 9 AM when I get to work last all the way until the evening.  Hopefully this is an issue I can easily remedy.  I'm starting home IV antibiotics for probably a 3-week stint, which will most likely just result in getting my numbers back up a few points to their usual low.  But at least I'll feel better.

I finally replaced my fried treadmill this past weekend.  My parents came up from Illinois and my dad and I moved 400 lbs. worth of treadmills up and down the stairs of my apartment complex.  This also probably contributed to my dehydration.  But now I'm set to get started in some sort of workout routine, granted I have the motivation to workout after a long day at work.

Yesterday was not an enjoyable day. In addition to a poor doctor's appointment, a good CF friend passed way at the age of 19.  I've lost two close CF friends in the past three months now, the only two really close people I've lost in my entire life.  I also received a new power supply for my computer in the mail to replace my fried one.  After a lot of useless fiddling with it, it still didn't end up working, which added to my frustrations of the day.  Now I have the added stress of trying to get my computer working again.  While I sat there contemplating my next steps and breathing in dust that had accumulated inside my tower, I started to spew the 'red fountain'.  I spent a good 10 minutes in front of the bathroom sink parting the Red Sea from my lungs.  It was probably the most blood I've coughed up at any point in my life.  Naturally though, I played the wait and see game, and it subsided eventually.  So yea, yesterday can bite me.

And that's the end for now.