Wow… from when I checked into the hospital on Friday night until now seems like a lifetime!  Really, time just wouldn’t move.

I guess I don’t have to say (again) that I am less than thrilled to be here.  I guess that is why I haven’t written until now, I’ve been down and didn’t want to spread those negative vibes.  This time around is tough because unlike when I was traveling to Cleveland, excited for answers and “ready for battle”, this time I am just BURNT OUT.  Burnt out because by now I thought I would be feeling good, burnt out from doctors and tests and doctors and tests; I don’t even know how I still have blood left in me they take so much!

It’s also a very hard thing to deal with from a mental perspective.  Talking about heart transplant certainly puts a certain kind of stress cloud over your day.  I could have never imagined I would be talking about a heart transplant… for me…. ever!  But here I am, in the hospital being evaluated for just that.  Tons of tests: x rays, cat scans, lung tests, right heart cathertization, left heart cathertization (those are especially awesome), esophagus tests, and evaluations by social workers, pyschologists, and a lot more.  It’s draining, I tell my story a lot and each time, instead of it getting easier it gets harder.  I’m to this point where I tell my story and I am thinking of what could have been done differently. Or if we “only caught it sooner”?  What If’s fill my head constantly.  Even while I sleep it’s what if, what if, what if, it’s exhausting!  I’ve always been really good at calming myself down.  This time around I find it near impossible.  Yoga breathing, relaxing visualization therapy, even writing… I can’t get my mind to stop racing!

Despite it all, I am keep positive.  I have this thing that I tell myself all the time.  I repeat it over and over again like a chant.  It seems to be the only thing that gets me through the worst time, when I’m left here alone with my thoughts in my hospital bed after I’ve just had an evaluation with a doctor.  I’ve just told my story and I am reeling, all these feelings of anger and sadness fill me but I can’t cry anymore I don’t have any tears left for this. I don’t even feel like screaming. Nothing. It’s a numb, alone feeling, and I just want this all to be over. I just want to be able to get back to my healing routine, my quest to get my ticker back in shape.  So, I start in my head and then sometimes I say it out loud “I am strong, I am healthy, everything is going to be alright”.  My cell mate here in the hospital definitely thinks I’m crazy. But whatev…

One thing is for sure, I am motivated more than ever to try everything and anything out there to get better!  I really believe I will. I have to.  Have to have to.

My hopes are that this great team at Columbia will fix my plethora of problems of late  (stomach, weakness, fainting) so that my heart can stop working double time and finally have some time to heal!  The poor thing, she’s all scarred and yet she’s been working so hard to keep me going despite the terrible colitis and other hits my body has taken.  I love my ticker, she’s tough and she’s done a great job despite the patchy scars all over her.  My ticker will sparkle again. I know it will.

So, back to my chanting.  It’s day 3 and on this day you start to accept the space you’re in but at the same time I long for my home and the great man in it, my comfy couch, my back yard, my freedom.

I am getting the breathing test today. I just got the Kicker checked out and turns out it could have been adjusted a lot better, it wasn’t pacing as it should have been.  So I am a little pissed about that.  I mean, if I have it in why would my doctor set it to a point where it’s practically useless?  So, we just made the voltage higher on the third wire that goes into my left ventricle.  Now it is truly bi-ventricular pacing.  I have decided I am not seeing my old Kicker doc anymore and I’ll use this one now.  This was strike 3 for her.

On tomorrow’s menu: scary cathertization tests: they stick a tiny catheter in through my neck to test the pressure on both sides of my heart.  Yes, it’s as scary as it sounds. 

Ok, I’ll be checking in.  Hope everyone has a good Monday!  Enjoy the fact that you are out and about, walk around and go outside for lunch!  Be grateful for your bodies and use them a lot!  That’s what I’m gonna do when I’m outta here.