This is Jillianne. We have given her an LVAD. We usually give LVADs to patients who are unlikely to survive longer than 6 months.
— Nurse speaking to a resident
I will leave you with that thought for a second…..
Unlikely. To. Survive. Longer. Than. Six. Months.
Yep. You heard me.
Why is this happening? Why me? Blah blah blah.
Why not? I say. Why. Not.
How did I handle this news? How would YOU handle this news?
To illustrate, what follows is a story of a typical morning while I was in hospital following my LVAD surgery.
Imagine a hospital bed and a lonely black chair in a single occupancy room (I know — a SINGLE room! Membership has it’s privileges … ) in a 1950’s era brick building with pseudo white/gray walls, chipping paint, speckled ceiling tiles with a questionable splash of something on one, a Cross hanging on the wall (I was in a Catholic hospital), and a window that lets in lots of light but also looks out onto a terrace of concrete and garbage. Got it? OK. Here goes.
“Jillianne? Are you awake?” It was my surgeon.
This was a very good question. For the past couple of weeks I was sleeping ALL the time. I was so tired. So very VERY tired.
“Why are you in bed? You should be up! Sitting in the chair! Walking around!” He exclaims.
“I was just up, Doc. You missed it!” I say. Sigh. He always seems to miss it!
Getting out of bed was hard work! Physically and mentally. There was a constant internal negotiation between how much longer I could hold my bladder and how much energy I had. This negotiation took place every couple of hours, or as my bladder required. Since I was on diuretics … this was often. Once I made the decision to get out of bed this is how it went:
Adjust the bed so I could get myself to the sitting up position. NO HANDS! (open heart surgery patients are not allowed to use arms and hands to support themselves). Swivel body to the left so legs can hang over the side of the bed. Wait. Breathe through the pain. Shuffle forward on backside so feet touch the ground. Disconnect LVAD from the AC adapter plugged into the wall. Connect LVAD to second battery source. Grab IV pole. Slowly stand up at the side of the bed. NO HANDS! Walk the 3 feet to the bathroom. Open door. Close door. Do my business (this is harder than it sounds for various reasons). Wash hands. Open door. Close door. Walk to the bed. Sit on bed. Connect LVAD to AC adapter again. Shuffle my body backward to the centre of the bed. Twist legs up onto the bed. NO HANDS! Pull covers back over body. Adjust bed for comfort. Sigh.
“OK, Jillianne. But you need to make sure you are walking!”
“I’m still so tired, Doc.” I reply.
“I know, but you need to keep moving. The more you move the better you will feel and the faster you can go home.” He insists.
“I will get another walk in today, I promise.” I reply, sounding determined.
“Good. I think you may be able to go home this Week! Maybe Wednesday or Thursday!,” he says. He is so optimistic. I love this man.
I wonder, Are ALL surgeons always so optimistic?
Over the next 4 weeks that followed, I would have the great fortune of meeting at least 5 — Yes FIVE — surgeons! Based on the data that I collected, all qualitative of course, I can easily say that optimism is in fact a trait all surgeons seem to share. In fact they radiate hope and optimism. If you think about it, it makes perfect sense that this is the case. Surgeons are people whose job it is to look at a patient — a problem — and say ‘I can fix that’ or ‘I know how to help’. It is their job to look for possibilities in the bleakest of circumstances. This was my surgeon. MY guy.
“Why do you have that cloth on your head? I don’t like that cloth…” He says, his voice raising.
“I’m so hot! And nauseous. I am always nauseous.” I reply.
“Hm. Let’s see what we can do.” He states. “Well, make sure you get up and walk today!” He flashes me a big smile, turns and leaves my room.
I smile in return. It’s hard not to smile at him. Even though I feel sicker than I have ever imagined possible, I smile. It could be the drugs because I am nauseous yet … happy. Yes. It’s probably the drugs.
In walks my nurse. Red hair on fire, blue eyes alight, and a big smile.
“I hear you aren’t feeling well? Still nauseous?” She asks, as she pumps the hand sanitizer dispenser on the wall and rubs her hands together.
“Nope, still feeling bad. Not so much that I am going to throw up. But pretty nauseous. And sweaty. That’s why I use the cloth.” As I point to my head, white cloth draped over my brow, “It helps. For a while… But then I get cold. Can’t win, really.” I answer.
She proceeds to take my Vitals.
“Well, I can give you some Gravol.” My nurse offers. Always an offer. Anything to make this easier. I love nurses. ALL nurses. I do not discriminate.
“We should do it now so you can eat.” There it was. The bribe. Nurses like to bribe.
Blech. Eating. Blech. Hospital food. Blech.
Hm. Maybe that was a threat?
Good thing my meal time wasn’t for another hour or so.
“Sounds like a plan!” I respond.
“After that we will go for a walk.” She floats out of my room.
In walks my cardiologist.
I am beginning to think they take numbers.
I imagine this is what celebrities feel like when they are promoting movies. You know, the ‘Press Junket’? Every time the door opens there are questions, answers, exclamations — every one of the ‘press’ waiting for that sound bite, that moment they can quote over and over on their entertainment news programs. Personally, I think only of the write-up I will get in Variety Magazine, also known as my medical chart, because that is the one that will effect my future. Boy, I hope I get a good review! You know, the one that details how incredible I am as an
patient actor, the one that provides critical praise about my illness capabilities?
What movie am I promoting today? You ask.
The Wizard of OZ. NO. Wait. Alice in Wonderland. That’s it! Alice in Wonderland. Only this isn’t the fluffy Disney one. Oh no, it’s not, uh uh. #ShakesMyHead. This is the hardcore Tim Burton adaptation. The acid-tripping live action one that is both awesome and creepy at the same time. AND Johnny Depp’s The Mad Hatter is my Cardiologist. LOL. Seriously. This is kinda true.
Yep. My cardiologist walks in. Throws some daggers (at my disease … not at me). Takes out the bad guy. Takes down the Queen of Hearts. Saves the day. And then does a crazy dance. Yep. This is pretty accurate. The only difference is I have as many cardiologists as the Mad Hatter has personalities — or cups of tea. BUT I still think this works.
One thing that I have discovered is that crazy optimism is something every one on my team shares. Surgeons, cardiologists, nurses, nurse educators, technicians — even the
vampires phlebotomists that sneak in under cover of darkness to steal my blood — every single person I have met along this journey has always been looking to help me and leave me with a sense of hope no matter what. No matter how bad the news or how big the bomb. Everyone on my team seems to share a sixth sense, an ability to know when I was at my weakest, my most vulnerable, even when I didn’t know it myself — especially when I was ‘acting’ following my surgery — because they seemed to come on stronger then. They always came in and provided…
An Ass kicking.
An Ass kicking.
I have come to believe that one way or another, life always turns out the way it should. It is not a sense of pre-destiny, or that it is necessarily pre-determined or pre-ordained in the cosmos somehow that whatever this life has to offer will happen. It believe it will just happen. That is all. There isn’t more to it than that.
Or is there?
I spent my formative graduate years, and my subsequent dissertation research, exploring how agency develops. Agency — our own sense of power to act on and change the conditions of our lives. I could go on … but the key here is choosing to change.
Change? But… What if we cannot change the conditions of our lives?
I have heart failure. I have an LVAD. I need a transplant …. I am just sick and don’t have a choice. These are facts that cannot be changed.
Hmmm. There seems to be a paradox here. There is no possible way that I can change these facts! Reality is reality.
Without my LVAD — my beloved Vlad — I would not be alive.
I would not be a wife, a daughter, a sister, a friend.
I would not be a professor, a teacher, a colleague.
I would not breathe. My heart would not beat. I would cease to exist.
(I would also not be sitting here writing this blog lamenting the fact that I forgot my headphones at home because it is louder in this Starbucks than I would like).
But, such is life. It does not turn out how we want, think, or believe it will. But it does turn out the way it should.
When I found out that without my LVAD I would, in all probability, not be alive today, I did the only thing I could do.
I chose to live.
I accepted help.
And most importantly — I got out of bed.