Hovel away from home

Room, Sweet Room

I can't remember the last time I slept somewhere without my husband, and here I was alone in the Great Salt Lake Area.  I had no idea how long I would be alone so I decided to hang out at the Extended Stay in Midvale, UT.  It was only 15 minutes from the hospital so I could get back in a big hurry, if I had to.  I could put things in the fridge to eat on my weird schedule and if I could get anything down (Eating was not something I remembered to do very frequently).  My folks would make me send them pictures over the phone of what I was forcing down, because logic kept telling me to eat something.  I basically existed on their hospital yogurt (very very yummy) and veggie sandwiches - but it was something to keep me fueled.  I felt as if my mind wasn't my own during this part of it - kind of an out of body experience. 

I've been a bit leery about publishing a post of the actual day of surgery.  I'm sure everyone's story is different.  Personally, I'm pretty good in an emergency - It's afterwards that I fall apart, but this was a unique experience.  In my life I guess I've been pretty lucky.  I have never had to face fear - or this kind of fear, the all consuming - everything that you are - kind of fear.  I know, someday soon, I'll have to face this all out fear again...but maybe because of the first experience my insides will be able to handle it better.

This is how I survived:  A few days before I had set up a group on my facebook page that including almost all of the people who would be waiting for updates, about my much loved husband. Not everyone had a facebook page so I also made a group of email addresses.  I had told them all that this is the way I would communicate with them during this ordeal.  If everyone tried to call me for updates I would have been frantically answering all their questions one at a time and I wouldn't be able to concentrate on the almost zenlike approach that  I needed to get through it. 

So me and my computer sat at one end of the waiting room and Charlie (Joe's best friend) sat at the other.  He knew I needed to be alone with my thoughts to get through this and he gave me exactly that.  And then came the next 8 hours - the longest 8 hours of my life.  We would get periodic updates and I would frantically type them out to send to the groups that I had set up.  I could almost physically feel the prayers and positive thoughts for Joe coming through my computer.  The first update was that they had started and so far so good, I believe the second was that they were ready to implant and would start the bypass, then when the implant was started and finally when surgery was done.  The first 5 hours were the quietest longest hours (seemed like 24) but the last ones seemed to go quickly.  Before I knew it Joe's surgeon came to talk to us - he took us to a private room, but I knew everything was okay because the surgeon had on the exact same pair of athletic socks that I had on - black adidas...It was a sign and I smiled.  He told us how successful the surgery was - it could not have been better news.  He told us that someone would come get us to go see him as soon as he was settled into recovery, but we could only stay for 5 minutes.  We were warned ahead of time of what we would see, which made us a bit apprehensive, but C'se la vie.   The walk to the recovery room seemed totally ominous, I felt like I was shrinking into a tiny mouse shape.  And then there he was...he did not look as bad as they warned us - matter of fact he looked just like Joe, except for the respirator.  They slowly woke him up, which was the reason they wanted us there - they feel that the patient will fight the respirator less if they see what they want when they open their eyes.  We smiled and he was calm - for about 15 seconds.  The reality of the respirator hit him and he panicked....it seemed like only seconds before they had him sleeping peacefully again, and we were ushered out.  Through the grapevine we heard that when they woke him up the second time that he didn't panic and could follow their orders....which was a very good thing.  Charlie hung around long enough to be able to see him and talk to him after the respirator was removed, then he left for Boise.  I sat with him for as long as they would let me - they told me he couldn't have his wedding ring back yet and a slight tear appeared in the corner of his eye (Yes, Joe dear - it was probably just the pain you were in).  My tear was bigger (I'm a sap) and I promised him it would be right in my pocket for when they would let him wear it again.

I spent a lot of time in the waiting room for the next 24 hours  -  I wanted to be there for every second they would allow me to be with him - no matter how short.  The Administration person came in and gave me the key to the LVAD commune at the apartments that are right next door to the hospital and told me I could move in anytime now.  I told her it would probably take me few days as I was alone there and was pretty out of it to move things right now.

This was just one area 8 in. x 5

This is when my own body betrayed me - two days after the surgery I broke out in an awful rash around my ribs on my left side and continued around to my backbone - it became quite painful.  It turned out that I had broken out in "shingles".  I had heard of it before because a few years earlier my mother had an outbreak on her face.  At the time she told me how painful it was.  I believed her then, but now I REALLY believe her.  The stress that I wasn't showing on the outside was sure yelling on my insides.  I didn't know what shingles were, so being the ever vigilant researcher I found out quickly - If you had chicken pox as a child it lays dormant at the base of your nerve endings - if it awakens it travels up the nerve ending and explodes on your skin.  It also makes you sicker than a dog - so two days after surgery my left torso blows up on me - and insult to injury, because Joe's in the CICU I cannot visit him until they went into scab mode - Alone in a foreign city, husband undergoing life saving procedures and me not being able to go anywhere near the hospital.  I had by this time moved to the commune.  I had to rest and get better - that was an ordeal.  Do you realize what a lily butt I felt like even saying the word "sick" and "pain"?  It made me feel so guilty.  Joe had just had the ultimate surgery and I was a pantywaist.  I was able to call the hospital for a few minutes twice a day to check up on him but that was it.  Talk about a helpless feeling.  I, to this day, bare the scars of shingles and if I get stressed they hurt.  And another grateful time that he didn't remember much of my not being there.

My image of myself

My head was doing weird things and I kept seeing situations in a comic or cartoon like mode - so, I broke out the sketch book: 

So here's my painful lesson learned for all you significant others:  if you have lead time get the shingles vaccine - a bit costly, but I will attest, well worth the money.