The walls are clean, they have been painted, they have been repaired to hide the damage to that part of me that will remain broken. I wake up everyday and see the evidence of my battles, the angry red scar that runs down the middle of my chest that seems to part me into two halves. Is this is who I now am? Two halves of a whole? The me before and the me after shaping a new identity that is sometimes certain but at other times shattered? I sometimes think that there lies within me another character, another part of myself, that only knows fear and anxiety. Perhaps it is a small monkey (or gorilla?) sitting on my shoulder, ever-present, ever-waiting to push me back into the reality that is my life.
In the week after I was released from hospital I was still a shadow. Alive, yes, but very weak, extremely anxious, and afraid of all these new sensations in my body. I had a new heart! Woah. My new heart, a thundering roar inside my chest, simultaneously giving me life while it took my breath away with the sheer power it, of the gift I could never be thankful enough for. I was in a new territory in the country formerly known as Jilli. I was in an undiscovered part of life that few have ever known, and fewer still are able to understand. My mind was a shambles, my stomach in knots, my medication making me sick. So, naturally, my body decided to continue it’s rebellion and my hair decided to leave all together. Thanks for having my back, hair.
Allopecia, The dermatologist said.
Will it grow back? I asked. Because, you know, vanity my name is thee, I thought.
Don’t worry. It might grow back in 6 months to a year. Likely caused by stress, anxiety, and the medications. You have been through a lot, Jillianne. He said.
Here’s some cream. He offered.
Seriously? A CREAM? Why is it always a cream that cures all?
OK. Let it go, Jilli. Let it go. I thought, with thanks Idina Menzel.
I laugh at myself about this now because, in all seriousness, my body and my mind were in COMPLETE shock. Ofcourse there are going to be ‘side effects’ to this trauma — the mind-body connection is definitely a strong one in me. OB1 taught me well. There is little by way of preparation that I, or anyone, could have done to prepare for my heart transplant and the 3 weeks that followed. Most of what I did in the 7 months between my LVAD and transplant was figure out how to live in limbo. I tried mostly not to think about the physicality of what was to come. I only focused on getting through it – I learned in those 7 months that I could get through anything if I knew I would – if I believed I would. I will not go into too much detail, as I think that probably warrants another post, but I can easily say that along with my steadfast belief that I would get better I had delirium (which, I don’t think is related to said belief), vomiting, nausea, confusion, pain, weakness, exhaustion (did I say nausea?) all in full force – they are the best of friends, actually.
Back to my original story… It was one week after my release from hospital. It was the morning of my first post-hospital biopsy. The first biopsy while I was in the hospital didn’t go so well. It came back with 0 rejection, which is what everyone wants, but the experience was quite difficult. It was not the fault of My Mad Hatter doctor, I was just a plain old mess. One big technical difficulty. So, I was completely nervous and anxious for this particular biopsy.
Upon checking into radiology they shoo you down a corridor, with inspiring hope-related prints and sayings on the wall, to one of a series of change rooms, complete with old-school lockers, and fashionable blue gowns. Picking the bluest of blue gowns from the shelf, I changed into said gown and opened the change room door and looked in a mirror.
Hello old friend, I muttered. Nice style you have today.
Sniff. I smile. Trying to hide the nervousness I know is showing on my face.
I walked out into the hall where I saw a row of blue-gowned fashionistas sitting in chairs waiting for their biopsy. I think there were 6 of us on this day.
When was your transplant? I heard one person say.
Almost two years ago. Another replied.
One thing you need to know about transplant patients. We have been through so much so there is nothing we love more than sharing our stories. There is often very little that is off limits. After all, there is a high probability that most people in the hospital have already seen you at your worst.
You having your annual biopsy today? The other patient said.
No, he replied. I am in rejection.
Hi. I said. I’m Jillianne. As I moved to shake his hand.
I know. He said. You were admitted for your surgery the same day I came in with rejection. I’m Mark. He smiled.
One thing you need to know about Mark is that his smile altered his face in such a way that you thought for sure he was truly happy to see you … or that he was hiding a secret.
It’s nice to meet you! I smiled in return. How did you know I was in surgery for my transplant? I asked.
I know everything about when transplants happen. I make it my business to know. He smiled mischievously. Us recipients have to stick together. I was sad that I missed you, but I heard you had a difficult time after the surgery.
Yes, It was very difficult! I went into complete organ failure and was in a coma for 8 days. I replied.
Mark nods. Then smiles and asks, When you woke up, what did you see? He pauses, and with complete enthusiasm says, Because I saw dogs and cats running around the ICU! He laughs.
Seriously? I said. I saw yellow vines crawling on the walls and I thought the nurses were out to get me!!
That sounds about right, Mark laughs. I also thought the nurses were out to get me. I had a rough time too after my transplant. Similar to yours. It’s coming off the anaesthetic that makes you see things. Those poor nurses!
Is this your first biopsy? He asks.
First one since I was released, yes. I reply. I’m pretty nervous. The first one didn’t go so well.
I’ve had a lot. I started out in level 2 rejection but got better. You will get used to it. They get easier and easier. He states. A shadow passes over his face then he smiles at me.
Are you afraid? I say.
Yes, he says. But you can’t live that way. The team knows what they are doing. There are still options if you go into rejection. That’s why I am here. I hope it comes back 0 rejection. That’s why I was in hospital. They infuse you with 1000 mg/day of prednisone for three days in hopes to reverse the rejection.
What does rejection feel like? I ask.
It feels like it felt before the transplant. Like it did when you were in heart failure. I am hopeful though because I feel great today! He replies.
I hope so too. I say.
The Mad Hatter appears at the door of the
tea room radiology lab and waves to Mark. You’re up Mark! He says. Mark smiles at me and says, Here we go!
See you on the other side! I say.
Fifteen minutes later Mark emerges, laughing and smiling as the The Mad Hatter raps him on the back and says OK, Jillianne, your turn! My stomach drops.
Taking a page out of Mark’s book, I hide my dread and smile, OK boss. I’m ready!
Not one to be easy, my body decides to challenge Dr. Hatter to a duel and I emerge not 15 but 40 minutes later. Due to scar tissue and a blood clot the first attempt at a biopsy through the right side of my neck had to be aborted and instead done through the left side.
Sorry, Jillianne. My doctor says. He wraps his arm around my shoulder.
Oh, you know my sole purpose in life is to make you a better doctor, I smile in return.
I emerge from the lab to see Mark, still in his blue gown smiling at me.
How did it go? He says.
It wasn’t as bad as the first time, I say.
See? I told you! He states.
Did you wait for me? I ask.
Of course! He says. That’s what I’m here for! Like I said, us patients have to stick together.
From that moment on we were fast friends. We changed and made our way upstairs. I introduced Mark to Nick when we arrived upstairs for our clinic appointment. They too became friends.
Mark’s biopsy that day did come back 0 rejection. Nick and I were so relieved for him. Mark went on with his life, even went to see a hard rock concert and twisted his knee dancing. Lord does that guy know how to live it! In the weeks that followed, however, Mark would be re-admitted to hospital with acute rejection. He would continue with several rounds of 3000 mg of predisone followed by plasmaphoresis (where they hook you up to a machine that replaces your blood plasma in hopes of reducing your antibody level). He also had to start dialysis treatment because all of this is hard on the kidneys. There were other treatments but this is all I know of. Since I was at the hospital twice weekly for cardiac rehab I would stop in and see Mark as often as I could. He only ever had one request: 70% organic dark chocolate. I would bring it whether he asked or not. I was always rewarded with an incredible smile.
Nick and I stopped in to see Mark on Christmas eve. He was in amazing spirits. He was finally on the ‘step-down’ ward which was a sign that he was well enough and we were all hopeful he would be released soon. In case you didn’t know. This is what a warrior looks like. A true hero. A mentor, a friend. This is Mark Wilson:
In that smile, in the sparkle of those eyes, lived such an undying hope and optimism.
On January 1, 2015 Mark passed away.
Knowing Mark has changed me. He made me realize that although I was in an undiscovered part of life that few have ever known, and fewer still are able to understand, he was one who did and he gave everything he had to make sure you knew it – that you knew you were never alone and there was always reason to hope and to smile.
I have discovered that my monkey isn’t made of fear and anxiety. I have discovered that my monkey is actually an Eagle made of hope and light and his name is Mark.
He is the only person I know who received a standing ovation and cheers of gratitude amongst tears at his memorial.
I only knew Mark for 2 short months, but I miss him. He was my heart brother — My Brother in arms.
Brothers in Arms – Dire Straits
These mist covered mountains
Are a home now for me
But my home is the lowlands
And always will be
Someday you’ll return to
Your valleys and your farms
And you’ll no longer burn to be
Brothers in arms
Through these fields of destruction
Baptisms of fire
I’ve witnessed your suffering
As the battle raged higher
And though they did hurt me so bad
In the fear and alarm
You did not desert me
My brothers in arms
There’s so many different worlds
So many different suns
And we have just one world
But we live in different ones
Now the sun’s gone to hell and
The moon’s riding high
Let me bid you farewell
Every man has to die
But it’s written in the starlight
And every line in your palm
We are fools to make war
On our brothers in arms