Ummmm Hello Higher Powers - We're Still Here and I Can't Begin to Thank You

I cannot possibly begin to explain the comings and goings of the last 6 weeks.  It seems so impossible to me that it has been so long since the mind numbing, world collapsing times of May. 

By the grace of whatever powers of the Universe my husband and I are still a couple.  Absolutely freaking amazing.  To defy all the odds, to stay one step ahead of complete disaster, fate....I just cannot tell you what a feeling that is.  

Joe, thankfully does not remember anything past being in the parking lot on our way in to the Heart Failure Clinic, here in Salt Lake City on May 10th.  I have always told the clinic that they needed to change their name, because it sounded so "fatalistic", but that day we were the epitome of that name.  Joe's wonderful, life-saving HeartMate II had failed us, failed our family, failed the doctors, had failed the staff, had failed our friends.  I heard phrases like "unprecedented", and thought words like "why us"? 

I have kept my blog going with facts, figures and pictures that hopefully will help LVAD families, because it was the only thing I could think of to do.  And now, here it is 6 weeks later and I am finally climbing out of my fog - one rung at a time. 

Last weekend our youngest daughter and her friends came to visit and this weekend (Father's Day weekend) our middle son, daughter-in-law and 5 month old grandson graced us with their presence.  Seeing them has afforded me the opportunity to start my climb back.  It made me realize that Joe and I still have a life other than the one we have been forced to occupy in the last six weeks.

You know how people talk about how "your stars align" when good things happen?  Well, I've been thinking about that a lot lately.  I think how if just one breath, one step, one anything had happened differently, I would not have the opportunity to be writing this particular blog chapter.  The fact that we decided that staying close to the hospital was the "right thing to do", which put us only 5 minutes away when our crisis began, the fact that Dr. C happened to be here in the hospital and could start operating on Joe, because Dr. R was already in surgery saving another patient, the fact that that particular day when we walked in, that (the other) Dr. R. and the rest of the staff in the clinic, although they had never seen "hemolysis" (red blood cells bursting) knew exactly what was happening - everything, absolutely everything went as perfectly as it possibly could, the fact that Dr. C. stayed in the OR when Dr. R. finally was able to get there (having two top notch cardiac genius surgeons working together), the two of them working so carefully and diligently to get that humongous blood clot (the size of an Italian sausage) out without letting any of it break off and travel somewhere that could have killed Joe.  I could go on and on - but you get the gist, "our stars were aligned".  

So instead of going through anymore of the horror story - let's concentrate on the miracle of our ordeal.  Because of the hemolysis, Joe's kidneys went on a "vacation" - it could have been a permanent vacation - but 6 weeks later they're back in working condition.  The miracles just keep on coming.  He suffered a few strokes during the crisis - but they were not debilitating - just minor inconveniences - lost some hearing, a bit of weakness in the right arm, worries about aspirating and not knowing it kept him on tube feedings for 5 weeks - but we're back to food again.  Are you amazed yet?  I certainly am. 

So now we work on getting a bit stronger and then, hopefully, we get back on that road to transplant.  

So what is our LVAD lesson here (?), because we are all for letting our experiences help the other LVAD families of the world - Never, ever, ever give up hope.  AND to the LVAD pioneers that have come and gone before us - thank you so much for getting us to where we are today.

Three more observations:  First, sometimes people that received LVADs check out for a while, in our case they had Joe in a medically induced coma for a few weeks, and they can have some very scary things happen inside their subconscious - Joe relayed to me, just this last week, that while he was in his head having these "scary times" he could hear my voice telling him that "every thing's ok", "I'm right here", "Don't worry - We got this" - "I love you".  He said it's what he held onto and that I kept bringing him back from his hallucinations - so remember - THEY CAN HEAR YOU - talk to them.

And second, these were times that I have no idea how I, personally, made it through sane.  Through the toughest times of this, besides my immediate family and a few lifelong friends, I had the support and love of fellow LVAD "Caregivers" that I have met through Facebook.  These ladies, "my ladies", are not even close to my geographic location but they got me through - they were tireless, amazing and the most awesome people in the world - so to Jamie, Tracy, Lisa and Rebecca - my lifelong love and allegiance.  My advice to others - use us, use others, make those networks that will keep you going. 

And third, to Joe, my Joe, you are an amazing human being - thank you for picking me to live your life with, and thank you for fighting so hard to come back to me.