On December 26, 2017 I had a heart attack. Yes. You heard me right. A F@%$ing heart attack.
On December 27, 2017 I was told I needed a new heart. My first transplanted heart was rejecting and full of coronary allograft vasculopathy (CAV) a kind of plaque unique to transplants that builds up for unknown reasons.
In that moment my life shattered.
Again.
My next thought then was: *WHAT?? How did this happen?*
So I am reasonably certain, dear reader, that you are thinking the exact. Same. Thing.
![\"\"](\"http://heartfailuretoharvard.com/wp-content/uploads/2015/08/break.png\")
It has been a long time since my last post, A Mind of My Own and a Heart of Another, where I told you I was having chest pain. Well, the pain never stopped.
It got worse, more frequent, and lasted all of 2017.
But I was OK. We had a diagnosis, right? I had coronary vasospasm, where my coronary arteries would spontaneously collapse and restrict blood flow to my heart muscle causing pain (I should note here that heart transplant patients don\’t normally feel their hearts, and if they do they\’ve had them for a long time – I was just over 2 years out at the time), since many people need a heart transplant after having issues with their heart, sometimes because of weight problems that could cause this, so learning about medical treatments that can help prevent these issues in the future could really help.
Yes, we did. But….
Even Dr. Toma, whom I have frequently referred to as the \”Mad Hatter\” was stumped – as was my entire medical team (a.k.a the tea party). Nobody had any answers. Only band-aids, tea, and lumps of sugar.
So much has happened it\’s hard to believe (indeed even academic publishers rejected a case study write-up of my condition, not believing my team that this was even possible – more to come on that).
It’s easiest if I just lay it out in a timeline, before I follow-up and explain more over the coming weeks with a series of posts.
So, that\’s what I\’ve been up to. I am amazed that I am even alive to tell you this sequence of events.
What should you take away from this, besides the obvious?
Things happen for a reason? No, they don\’t
What doesn’t kill you makes me stronger? (a la Friedrich Nietzche and Kelly Clarkson)
No – Not even close.
If there is a phrase that describes me now, perhaps one of these are more fitting:
I am more vulnerable than I thought, but much stronger than I ever imagined
(Tedeschi & Calhoun)
Let me fall if I must fall. The one I become will catch me.
(Baal Shem Tov)
I am. Still. ALIVE. (or I remain, as I have written about previously, Hard to Kill). Regardless …
There\’s no day but today. And I intend on living it!
Lyrics
[MARK]
There is no future
There is no past
[ROGER]
Thank God this moment\’s not the last
[MIMI & ROGER]
There\’s only us
There\’s only this
Forget regret or life is yours to miss
[ALL]
No other road no other way
No day but today
[WOMEN]
I can\’t control
My destiny
I trust my soul
My only goal is just to be
[MEN (Overlapping)]
Will I lose my dignity?
Will someone care?
Will I wake tomorrow
From this nightmare?
[WOMEN]
Without you
The hand gropes
The ear hears
The pulse beats
Life goes on
But I\’m gone
\’
Cause I die
Without you
I die without you
I die without you
I die without you
[MEN (Overlapping)]
There\’s only now
There\’s only here
Give in to love
Or live in fear
No other path
No other way
No day but today
No day but today
No day but today
No day but today
[ALL]
No day but today
Sources:
Title image from Steerner & Tobu – Alive Album.
Video Finale B, No Day But Today, from the Motion Picture RENT Columbia Pictures (2005), Music and Lyrics by Jonathan Larson and Billy Aronson
May 25, 2018 @ 10:36 am
Lovely…simply lovely
May 25, 2018 @ 1:22 pm
I am SO glad to have you as a part of my tea party 😉 Thanks for reading – share it with my nurse buddies <3 Get ready for more! Posts, that is. Not more drama LOL
May 25, 2018 @ 2:06 pm
Thanks so much for the chronological outline portrayed with such poetic clarity, Jillianne. I had somehow missed a whole chunk of this story along the way (I was still back in the vasospasm/microvascular pain stage with you!) so I really appreciated this overview. I’m so sorry you went through all of this drama. Thank you for this, and for sharing the brilliant Baal Shem Tov quote: “Let me fall if I must fall. The one I become will catch me.”
I think I’ll go embroider that on a pillow. . .
hugs to you,
C.
May 27, 2018 @ 7:22 pm
Thanks, Carolyn. So much happened it was hard to write about in such small pieces. I will be following up for sure. Thanks for all of your support and information early on – it definitely helped me speak to my team about the kind of pain I was having which as we both know is critical in getting the referrals and help that are needed. We got the first 6 months of 2017 right 😉 Now to figure out what the heck happened the last 6!
Hugs right back, HeartSister 🙂
May 25, 2018 @ 4:21 pm
Beautifully written. Thank you for sharing your adventures in Wonderland.
May 27, 2018 @ 7:23 pm
Thanks, Rebeca! I hope you are well and enjoying your new heart!
May 25, 2018 @ 5:10 pm
Wow! Just WOW!
May 27, 2018 @ 7:23 pm
Good times, Jess. 😉 LOL
May 27, 2018 @ 3:39 am
Firstly, you don’t know me but I’ve read this blog from the other side of an ocean for a while now, and I am both stunned and incredibly relieved that you are still alive. Secondly, your writing is exquisitely beautiful, and I’m so glad to have some more of it to digest. Hopefully the next 3.5 years are far less eventful!
May 27, 2018 @ 7:24 pm
I read your blog as well, and the sentiments are shared. I hope now that I have ‘broken the seal’ on this new chapter, I will be able to write with greater ease. It has been a very tough year. I hope this next chapter has less drama for the both of us!
May 27, 2018 @ 9:10 pm
Sending our love, Jillian, our miracle neice! Your writing is truly stunning and inspiring and it goes without saying what a gift it is that are you are alive. I’m dreaming up a performance based on the phrase you quote: Let me fall if I must fall. The one I become will catch me. So beautiful. I’ll let you know when it happens. Most likely Fringe 2108 in August. Dedicated to you, of course. xoxo. Can’t wait to see you soon!