… you just can’t differentiate between a robot and the very best of humans.
― Isaac Asimov, I, Robot
I am the very best of me. But I wasn’t always this way.
Lots of people have asked me lately: What is it like? What’s it like to have a mechanical heart?
I really only have one answer to that question: It is awesome!
This answer to many of you might seem strange. Strange because it is hard to imagine what it’s like to have a sick heart if you don’t have one. Because… well… Why would anyone have to imagine such a thing? Well, imagine it or no, it happened to me. And it has happened to countless others.
Medically speaking what made me the person I am today is called Idiopathic Cardiomyopathy. Which, literally, translates to unknown cause of heart muscle disease. This is the disease that has made me sick. VERY sick. So sick at times I couldn’t walk. So sick I was unable to lay down to sleep because I could not breathe without feeling like I was drowning. So sick it made me feel so tired that getting out of bed was a massive effort — yet I did. Every day. No matter what. I don’t say these things this way to elicit pity from you but simply to make you aware; to state the facts. Facts that had up until my LVAD surgery in March of this year had become part of my every day life. A life I have every reason to embrace, to celebrate. Here is why.
This July marks 9 years. Nine years since I have had this disease. A lot has happened. So much so that it almost seems impossible, improbable that this much could happen to one person. Yet, it did. It happened. Life happened.
Here I will lay it out for you and for me. Simply, painfully, joyfully.
WHAT? you say. WHAT? I say! Hard to believe, I know …. and I was THERE. I was witness. I was an active participant.
So much has come about that it is difficult for me to put into words. So difficult, in fact, it often takes me a long time to write it at all. Hence, the time between blog posts. Because writing it means re-living it. Re-living it means making sense of it. To do that AND be able to describe it in any meaningful way — the emotions and the events, the choices and the situations, is challenging. But I am ready. I am writing … Trying desperately to convey what it has been like. So that I can help you understand — No, help ME understand — what this all means.
If it means anything at all.
Perhaps words aren’t the best form of communicating my revolution evolution.
If one were to have before and after photos, or X-Rays (Naturally, lol), the change in my life would look like this:
Gasp! Here I am. Naked before you. Naked before the world.
What you see above is me — from the inside.
On the left is what I would have looked like, possibly, 10 years ago.
A nice small heart indicated by the white mass in the centre of the X-Ray, nestled neatly inside the chest in the centre, pointing slightly to the left, hugged by the lungs, wrapped by the ribcage. A neat little package, No?
On the right is what I am now.
A heart three or more times the size that it once was taking up ever-increasing space in the centre and left side of my chest. Squeezing my left lung up against my rib cage leaving it, and me, often screaming for air. #GoodTimes
In addition to this, what you also see in my X-Ray are all my different parts — all my acquired hardware — beautifully captured in all their mechanical glory.
On the top-right side of my X-Ray (taken some time in late March of this year) is my ICD – my Implantable cardioverter-defibrillator along with the lead wire connecting my ICD to the inner chamber of my right ventricle. This was my first foray into my new bionic life. I received this little gift in November of 2010 while I was at Harvard. My ICD was recommended first by my team at the Heart Centre in Vancouver and seconded by my cardiologist at the Brigham & Women’s Hospital/Harvard Medical School in Boston. So, I thought, When in Rome … err Boston. A nice souvenir of my Ivy League adventures wouldn’t you say? #WickedAwesome
Both of my teams recommended the ICD as ‘Primary Prevention.’ This basically means, We don’t know what’s going to happen but you are sick — very sick — and we want to protect you just in case. Those of us in the know with this disease, or members of Cirque-du-Soleil, call this a safety-net. Until March of this year I never needed my safety net. All I have to say is when you need it … you REALLY need it!
My second titanium gift came in October of 2013. If you look closely in the X-Ray and follow my spine downward you will see a small oval or oblong white object. This is my MitraClip or clips as I ended up getting two. Why have one when you can have TWO at twice the price? LOL. Upon being evaluated for transplant in late August / early September of last year my Heart Centre team along with my Victoria-based super hero Cardiologist presented me an option to try the MitraClip. Since my heart was so enlarged I also had a severely leaking mitral valve. This is problematic because the blood that is supposed to go out of the left side of my heart to the rest of my body was swishing back and forth between chambers. This caused all kinds of problems, most notably, extreme fatigue and shortness of breath.
The MitraClip is exactly as it sounds – a clip for your mitral valve. Think of a clothes pin cinching together two pieces of cloth on a clothes line. It’s that simple. Since I am special (I know, hard to believe) and there was NO DATA and very little research on people like me this procedure would be COMPLETELY experimental. Essentially, like a flip of a coin, I had a 50/50 chance of a change in my symptoms. Since the risk was only slight — a MitraClip is placed using a catheter through an incision in my groin, and is not unlike the heart muscle biopsies I had undergone before, Nick and I decided Why not? In the end, It didn’t really do much … I guess my symptoms were a little better but not by alot. Either way … there will be a research article about me in a forthcoming medical journal. If I can get a copy I will share it. #RockStarPatient
Now, for the Pièce de résistance, the star of the tragedy comedy show, my LVAD. In the X-Ray above, it is the T-Shaped object on the bottom right. What you can see is the actual pump housing inserted via the ‘stem’ of the T into the left ventricle of my heart. On the outside of my heart is the top of the T. You can also see a wire, my driveline, connecting the pump housing through a small hole in my stomach to the controller and batteries I carry on the outside of my body, in an awesome (not)Gucci-like bag. I think of my driveline as my lifeline – my umbillical cord – keeping me connected to life as I now know it. Also note here that, again, certain things transpired following my LVAD surgery to make me special … so … naturally there will be a second article coming out in another forthcoming medical journal. I don’t even have to try. #RockStarPatientPartDeux. #IShouldGetTenure
Since I have spoken of my dear Vlad before, I will not go into too much more detail here except to say that Vlad my LVAD is the little engine that could. He keeps going no matter what. I love him.
So this, in sum, is the mechanical me. This is my situation, my life.
Jon Paul Sartre states “if it’s true that [a wo]man is free in [any] given situation and that in and through that situation [s]he chooses what [s]he will be..” after 9 long years, I have made a choice. I acknowledge that the sum of my mechanical parts is not all of who I am. But, rather, it has made me who I am now and it will continue to power the change that defines my future.
I am free. I have choice. I am me.
I Robot. I Bionic. I Am.
July 16, 2014 @ 7:34 pm
You Jillianne, you Robotic, you Bionic,
Joyful. Radical, Blessed
August 29, 2014 @ 6:37 pm
Am humbled. You are a wonderous, joyous being and qualities we should never forget we have the choice of being. Thank you.