How can I possibly follow my last post? What can I say, how do I say it?
These are the thoughts that have been plaguing me.
That is, until I realized as I wrote those two questions down that my thoughts aren’t actually about writing or posting at all.
Since Mark’s passing I have been immersed in my physical recovery. I have spent a lot of time trying to figure out what my new life looks like. The fact that I can even imagine my life at all past a few days or a couple of weeks blows my mind still and I am 10 months out from transplant. I don’t think this fact will ever cease to amaze me.
Always in the back of my mind, however, is Mark.
His smile. His light.
His suffering. At the end.
This is so hard for me to write. So very very hard.
It is hard because I think of Mark’s mom. It’s hard because I think of his sister and her family. It is hard because I think of his friends and how devastated yet sublimely proud of their loved one they were, they are, at his passion and courage.
I did not know Mark as they did. Mark and I were kindred spirits in a different way.
Mark was my heart brother.
In the post-transplant and pre-transplant community heart brothers and sisters are those of us who share in the battle for our lives against heart disease. Against ALL KINDS of heart disease. It is within this community that we find ourselves, not out of choice, but out of circumstance.
We see ourselves in each other. In the battles. In the wins.
In the losses.
This is why it has been hard for me. Mark, both in life and through his passing, has woken me up to the reality of post transplant life in a way that shocked me. It shook me out of the bliss that was simultaneously both my recovery and my awakening, no matter what I felt like physically.
What I have come to learn in the months since my last post is that my post-transplant life, both physically and emotionally, is a series of peaks and valleys, lights and darks, blacks and whites. I am fortunate that so far I have had mostly peaks but I am forever going to be wary of the valleys, as Mark’s passing taught me.
The valleys can come, the dark can arrive, the black can cover your eyes in an instant. The risks post-transplant are much more significant than I think most people realize. To highlight:
[su_dropcap style=”simple”]1[/su_dropcap] Someone sneezing in the same room as you, coughing on the bus on your way to work, not washing their hands, could get you sick. All that illness would do to a ‘normal’ person is slow them down a bit. That illness could kill you.
Masks and hand sanitizer are a staple. I take them everywhere. Don’t leave home without it!
[su_dropcap style=”simple”]2[/su_dropcap] For whatever reason your body could decide one day that it is going to fight what it considers to be foreign tissue – your donor organ … my heart … OUR HEART! – It could fight to the point of rejection. That rejection could kill you.
I take my transplant meds on time. Every time. Twice a day. Every day. Full stop. There’s an app for that.
[su_dropcap style=”simple”]3[/su_dropcap] Cancer. The risk of cancer, especially skin cancer, in transplant patients is roughly the same as those 20-30 years older. However, this risk is inversely related to age, with younger recipients experiencing a far greater relative increase in risk compared with older recipients. They tell me I am young. (Cough. Cough. They DO, I SWEAR IT! Note, however, that ‘they’ are two years younger than me… so….). So my risk is greater. Cancer, as we all know, could kill you.
I carry sunblock with me everywhere. I wear it like it will never go out of style. My red-headed, freckle-faced, Scottish-Irish ancestry requires it.
[su_dropcap style=”simple”]4[/su_dropcap] For whatever reason your donor organ decides to develop a kind of coronary artery disease (Cardiac Allograft Vasculopathy; CAV) unique to transplant patients. It can develop so fast, and so silently, that it can cause arrhythmias, heart attack, heart failure, and sudden death. Most of this without the recipient even feeling anything. In short, CAV could kill you.
The only way to detect CAV is through an angiogram. I have my first one post-transplant in October.
Wish me luck!
Well that was a dark place, wasn’t it? You think.
Yes. I know.
Why you go there, Jill? You say.
I have to. I say.
I am seeing for myself the light of everyday, in my walks along the beach, in the smell of the ocean air, in the love of my husband, in the joy of my new Godson, in a fresh brewed steaming latte, in the amazement that I feel when I walk up a flight of stairs – I have been able to do this now for several months and it never gets old. Of these things, and many more, I feel such gratitude at the life that I am able to live that it is difficult, to say the least, to even risk a thought of the other side.
In Mark’s passing I have realized that there is no real grey area in post-transplant life. It really and truly is black and white.
My medical team had always described the decision to recommend a heart transplant as a delicate balance. A balance determined by the point in which the benefits of a new heart, and the associated risks, outweigh the risk of keeping my own heart. My own heart, or my old heart as I have now come to identify her, was known to be fallible – to the point of no return.
When the decision came to be listed Nick and I, and by extension my family and friends, became aware of the risks. At least, aware as one can be when faced with the reality that what your doctors are really saying is:
There is nothing more we can do for you. Your heart is dying. You are dying. Sign here if you want us to take out your heart. Sign here if you want us to save your life.
Sign here to declare your hope that a stranger, in the midst of their deepest unimaginable pain and loss, makes the decision to save your life.
Without hesitation. I signed.
And I would sign again, if necessary.
I need you understand that although life is so incredibly beautiful, the other side can, and does, quickly change for many transplant patients. I hope, and pray, that this doesn’t happen. But it might. And I want to prepare you. I want to prepare me.
I need you to see it. I need to see it so that we both know that this life, right now, this moment, is what matters. That this incredible gift that I have been given, that I take with me everywhere isn’t being wasted. It will never be wasted. I love every day I have been given and I tend to live it like it will forever be my last.
For you see, for now at least, I’m Back to in Black.
August 22, 2015 @ 5:27 am
Beautifully written and so profoundly moving. You’ve been on an adventure for the past couple years that few of us (even most other heart patients) could even imagine, and – as we chatted about a few days ago – on the hierarchy of heart disease, transplants top the list. You didn’t sign up for this, you didn’t see it coming, and, like your late heart brother Mark did, you live with the pervasive and unspoken reality of “What if?” It seems that small daily victories like walking up the stairs (yay!) not only help to balance living with pervasive risk, but support your inspiring “I love every day I have been given” worldview. Best of luck to you, and thank you for writing this important post.
August 23, 2015 @ 11:28 am
The reality is we all live with the ‘what if?’ The difference is, as a heart family, we know it 🙂 Thank you for all the work you do in raising awareness. One day, If I can manage to be diligent in my writing, I can have the same impact you have had!