Not All the Wounded Have a Bullet Hole

I haven't touched on why Joe got his sick heart, maybe it's time.  

My husband was a Red Horse Engineer the latter part of his military career.  This means that his unit was "the first in"....They were the ones who built the runways, MASH units, tent cities, etc. for those that came to fight the good fight.  He was on a joint NATO mission in Bosnia, when he caught a virus.  There were no doctors for these guys (they came later), so when they were sick they laid in their cots until they got better - and then right back to work.  He did get his heart checked later and they knew that there was a problem. but it was just rolled under the carpet.  A few years after his retirement is when we found out that he had a bad case of cardiomyopathy (enlarged heart). Luckily the FDA had approved new medicine which was pretty effective with Heart Failure, and we got hooked up with a wonderful doctor at the VA who knew exactly what he needed.  The medicine kept CHF (Congestive Heart Failure) at bay and we were able to go on with our lives for quite awhile.  

12 great years passed where we were able to raise 4 of our children (Bobby is older and had already "left the nest"), and Joe was able to have his "second career" as a contractor, owning his own business. The blended family bit got a bit trying at times, but we muddled through knowing that eventually the children would be adults and it would be just the two of us.  Joe is the only "father figure" that my natural children knew and they all grew to love their "Daddy Joe" or "Papa Joe" very, very much.  I really could not have picked a better man than he to show them what a Dad was all about, even for Bobby.  We collected a lot more children along the way, by osmosis, Big Zach, Little Zach, Trina, Lindsey, Marisha, Brandon, Sarah, Candace, Jenell, Left Josh, Matt and more who love this man so very much.  They all know that they can count on him always.  

They are all adults now and we taught them the best way we knew how.  All we asked of them was for them to be responsible and follow the rules.  They have all had their stumbles along their path but we are proud of all of them and who they are becoming as they make there way through this world.

Do me a favor today, and thank a Veteran or a current member of the armed forces for their service.  

Thank you Joe.  Because of you and people like you our world is a safer place to be.  And darlin', you are my hero.

8 minutes

It is 8 minutes till 8:30 am - 8:30 the magic number when I can go back in the TICU and be back by my best friend's side.  We have been through so much, and here we are again - in crisis.  Have I said OMG yet?  Nope  - OMG what just went on?

In, then out again for them to do the TEE (Transesophageal echo).  The TEE showed a much worse situation than anyone here had imaged.  Before this we were looking at a pump replacement - or transplant - but all of a sudden I had two of our team doctors sitting in front of me and telling me that the game plan had drastically changed.  Instead of a pump replacement (not the whole LVAD) or the possibility of transplant with the next helicopters flying over us, to we are in "save his life today" mode - a complete new LVAD - cracking his chest AGAIN - and starting over again.  

2 hours - 2 hours so hard fought for and then gone.....2 hours where not one friggin helicopter dotted the sky.  It was a snowball's chance in hell - but still..................

I told him "Come back to me", just like 3 1/2 months ago, but this time he had tears in his eyes and he said "I'll try".... My world was spinning out of control.

I knew my place in that waiting room - watching the clock and pretending that I wasn't scared out of my wits....the first time was 7 hours - now 8 went by - 9 went by - 10 went by - followed by 11  - 


the surgeons finally joined me in the waiting room - they looked all done in.....found out they'd spent the last 4 hours stopping his bleeding - but they did - he's alive and we have a chance.....

Warning - If you're a waitress anywhere - never wait on us!!!

Haven't mentioned this before, but Joe and I are poker players and if not poker, then we amuse ourselves with slots.  :)  Heathens?  Oh probably!

When Joe was finally released from the hospital and they put a 2 hour away leash on us we explored and found a little town in Nevada that's only an hour and twenty minutes away.  Leave it to us.  

April 7, 2011:  We stopped at a Denny's  in Toole, UT  for breakfast on our way for a respite in West Wendover, NV.  For those of you who know my husband this won't be a new circumstance, and for those of you who are lucky enough to call him Dad you will love this chapter.  

Our waitress complained the whole time about her job, hours, boyfriend, etc.  What is it about us that makes strangers talk?  Joe had been bantering with her through our whole meal, she was giving as much as he gave - typical smart as* stuff...then he played his ace in the hole......

He said, "You know I could drop dead right here, right now."  She starts to comeback, but had no idea she was up against "The Master".  He said, "No, I'm serious.  You see this (as he shows her his bag that holds the batteries to his LVAD".  (I'm thinking "I am so, so sorry") She looks, and he says, "It's my artificial heart".  She looks at me with great big eyes and serious face and says "Is that true?"  I said just one word, "Yep".  I believe we both had to pick her up off the floor, and we were very lucky she didn't pee her pants.

Joe seems to have no fear of female incontinence - Lucky for him, because I was laughing so hard I thought I might pee too!

You just gotta love him.

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.

The Red Undies

If, by any chance, you have lead time to heart "procedures",  our warning would be: Do not wear red undies. Under these circumstances it's the humorous moments that keep us sane.

Joe's nurse (the one from previous post :) ) came in to check on him the day after the life flight.  He was checking his leads and iv's and he had to check the sites from the two procedures Joe had in Boise.  One of those procedures was a cardiocath.  If you don't know this procedure it is done by inserting a cathetor into the groin area and guiding it to the heart.  So said nurse pulled up Joe's sheet and said, "Oh My God, you're bleeding" ... 

Needless to say this gave us a real start ... and then everyone in the room (Nurse, Joe and I) realized that he had on his red boxer briefs. 

You just have to imagine the laughter outbreak after we all came to this realization.  It will be a story that will live in our funny-bones forever...Lesson learned.  :)

Hearts Across America - For Joe

Mom and her McD gang - WA

Toots -ID

Trying to figure out something I could do, that would have meaning , stewed around in my brain, I thought, Why can't I have everyone wear an heart on their chest for my Joe.  I went and fashioned one for myself. A heart with the tin man that had been the icon for our whole odyssey through the cardiomyopathy and beyond.  That little tin man had been with us for a decade or more.

Mine - Ut

Everyone always asks, "What can I do?", I figured everyone could do this.....and they did.  From the west coast to the east coast and all points in between.  Friends in Canada and Friends who happened to be in London at the time.

All day long they wore their hearts.....and they worked.  Thanks to all the wearers who sent all of those positive thoughts Joe's way....And keep those hearts handy because we have one more to go........

Best Friend's Grandchildren in Washington

Adopted Daughter's (Trina) Family in Georgia

I Don't Think We're in Kansas, anymore Toto!!!

Well here we are, NOW WHAT:  The next week was an amazing time, personally I was just so grateful that we still had a chance.  Luckily, our cardiologist in Boise had prepared us for the possibility of getting an LVAD (left ventricular assist device) before all heck broke lose during surgery there, so we weren't total neophytes with the lingo.  Joe had been fighting cardiomyopathy (enlarged heart) for a lot of years so not a lot surprised us - death however, yeah that would have been shocking - I don't care how prepared you are for possibilities - when the possibilities become realities it is shocking. 

Note to anyone who faces this and has any lead time:  Get together a notebook put anything and everything you have for what has happened up to this point.  Put in a list of medications, Doctors names and numbers, what happened when, when it comes to tests, and anything else you feel might be significant; and then glue it to your thigh.  

When we got here, I just assumed that everyone would be talking to each other - but I had the latest medication list, and they were very grateful that I had it.  They told me that I was the best prepared they'd ever seen and that shocked me.  I gave them my notebook and they took it to copy anything they might need in his file here in Salt Lake.  

They had Joe on IV medications that were helping his heart do the pumping.  It was what was keeping him alive now.  If you don't know my husband personally this is typical Joe:  He just kept telling them he felt fine now and he didn't see why he couldn't leave...It was humorous for the gazillion members of the Heart Team that were in and out of his room regularly (little did they know - he really meant it). 

We had so many staff members coming in and out it was hard to keep track of their names - I finally started taking notes...It was important who was a member of the LVAD Team and who was a member of the transplant team so you  could be on top of what they were referring to.  It can be horribly confusing if you don't know transplant vs artificial heart conversation.  We knew that he was getting the LVAD to save his life, but we were also being worked up for the elusive heart transplant.  

Our son Josh had come down to Salt Lake (from Boise) as soon as he could start driving while we were being life flighted (Josh and wife Sarah had just had a son, their first, one week prior), and son Jeremy had picked up my car (which I had thrown clothes and things into the trunk) and started driving it here so that I would have something to get around in.  Son Bobby and daughters Molly, Kimmy and Elizabeth were in constant contact with us by phone in the week before surgery.

The endless parade of people

 

"The White Light Experience":  Joe's doctors in Boise had basically thrown his ICD (internal defibulator) into him before he left Boise and the normal testing, etc. was not done.  When they got Joe up for a walk he got to the door of his room and zzzzzaaaapppp his defibulator went off.  They got him back to bed asap and Joe told them that "was a shocking" experience (he just kept them laughing).  They got the pertinent people in to set the ICD to a better level, and he told me that all he saw was white - I found that interesting, he found it shocking :)  

Swan-Ganz Catheter

They took him away and inserted a Swan-Ganz catheter in his neck so they could insert the medicine directly to his heart.  The doctors thought that as long as he was doing all right on the IV medication they would hold off on the surgery. - The stronger the better.  He posed for a picture for the boys, which includes an interesting finger.  It will live in infamy, but not on this blog.  It was an entertaining week because Joe's memory was shot due to the slowness of his blood getting where it needed to - what he was told he wouldn't remember in 5 minutes.  He had to be told over and over.  Josh and Jeremy had left Sunday, and Joe's best friend Charlie was beatfeeting to get here for the surgery - so I wouldn't be alone.  Thanks Charles.  Surgery had been set for the 27th of January.

 

The 6 minute walk

The famous 6 minute walk:  The tests kept coming all week.  Joe's favorite was the "6 minute walk".  He was to walk as much as he could for 6 minutes and the MCS (LVAD) team would record his  results.  He is proud that he made it all 6 minutes and told them he could do more.  On his last trip up the hall he started to break out in a jig - our MCS nurse told him "it's not a race", Joe just laughed. To me he said, "See I don't need their surgery". 

The night before surgery:  One of the doctors arrived and Joe told him that he thought their machines were off kilter and that they should believe that he is okay and doesn't need their artificial heart.  This particular doctor is a bit stoic and he told Joe, "I've known my machines longer than I've known you - so I'm going to believe them".  I swear he was smiling as he turned his back and left the room.  Joe's nurse that night was a wonderful young man who had become an endeared character in our lives that week.  He came to get Joe for his shower and "shave".  I couldn't help giggling, because they both decided that they would know each other "much better" after this.  They both came back very sheepish....but I must say my husband's legs looked better than mine, smooth and shiny LOL.  The jokes were flying for awhile, but I know it was Joe's way of getting through the memory of a very uncomfortable situation.  I do thank goodness often that he doesn't remember much of that week - or the one to come, but I think the "shave" is emblazoned in his memory banks forever :) 

He had a very restless night, so many thoughts running through his head.  Mine was no better for the same reason.  We talked little, and held hands lots.  

And now for D-Day:  Around 5 am his nurse (yes folks, that nurse) brought him some medicine to dope him up before they took him to the OR (surgery was scheduled for 7 am).  He had to take off his wedding band at this point - he didn't want to, but they made him.  I took it and promised him I'd give it back as soon as I was allowed.  The medicine worked fast and he soon nodded off.  He would startle awake, smile when he saw me and closed his baby blues again.  Then they came to take him away - I stayed by his side until they got where I couldn't go any further.  I kissed him with tears in my eyes.  He smiled, and as they wheeled him away I yelled at him as I was sinking down the wall to my knees, "Come back to me.  For God's sake come back."  He raised his fist as if in triumph and yelled back "I will, I promise".  And then he was gone, and I started the longest vigil of my life..........my mind would whirl, then go dead, then whirl again.  I heard my mom's voice a lot that day, "Breathe Jenny, just breathe.............I must have been a sight.....and then.............