Most days, I’m ok with this wait. I have days too that I secretly wish for the call not to come on particular days for selfish reasons. Yet, I’m ready for that to happen. Well, part of me is…
I packed my bags early before these emotions had a chance to hit.
I made arrangements for my ambulance once I listed (just in case) so all of us could feel comfortable living life or if we were super emotional about getting down to the hospital on time, we had other ways & means.
I try to have support for my supports & support for myself. I can’t think of everything but I think I’ve done ok.
What I hadn’t anticipated was the feelings stirred up when people listed after I did get calls & transplants before I do.
There’s a few people I know who have been waiting & listed longer than I have. They will (even if they end up going before me) have waited longer than I will ever wait, so I’m not alone.
Yet, part of me is actually a tad sad for those who go so fast. Maybe it’s better for them so they don’t have a wait to sit & think?
But I wonder if this is all a huge emotional whirlwind they are ready for? Or if they were referred when they should have been by other doctors?
With as sick as I am & as much as I struggle some days, I’m relieved that they can turn the page on getting to the other side of the journey.
End stage organ failure for anyone is no joke. It’s immensely painful. You do your best to shield yourself & others from that, but at times you just can’t.
In the same breath, you can’t embrace a second chance at life without facing the fact that you are indeed dying. Even if it feels you are only dying by inches. It’ s a huge emotional whirlwind.
I’ve had 12 years & countless friends to watch how they managed this journey. So I found myself much less blindsided & somewhat more ready, but still…there are times I question if I can handle this, even when I know I can. It’s important I not shrink away from that.
I also admit that at times I get jealous of people who have gotten called so fast. But that jealously only lasts a moment because I know I’m still preparing daily for this challenge. I will be ready when it comes, but it will happen when it does, period.
I think back to the time in 2006, when I survived a total collapse on my right lung. It could have killed me because it happened at 3am & the lung not only collapsed but air was building & trapped in between and compressing the lung too. It was by far the scariest collapse of my six that I ever had.
Luckily, I knew instinctually something was very wrong & my friends responded in kind. (I am thankful to have my independence but not to live alone.)
The day after my surgery, I was sitting up to have my first real meal in days. I was tired, barely awake, coming down off anesthetics. A fellow or a resident (don’t remember exactly now) barges into my room. Proceeds to have a talk with me about transplant. But this wasn’t at all compassionate.
He tells me I’m in denial about my disease. He tells me that given my life expectancy and medical history I need to be prepared for the inevitable.
Even in the wake of such obtuseness & disrespect, I tell him about bridges. I explain that oxygen is a bridge, much like transplant & just because someone is not at that bridge yet doesn’t mean they are in denial or haven’t thought about it. But to cross it, takes people time.
He dismisses me & isn’t satisfied until I’m crying.
I start yelling & tell him to leave that he isn’t my doctor or a surgeon, this isn’t my normal hospital, I haven’t had time to recover from surgery yet, and he has no right to tell me what I’m ready for & I refuse to discuss this with him.
Later my parents & my nurse come in & ask me why I’m so upset.
I tell them, the nurse tells my surgeon. The surgeon makes this resident/fellow apologize (& is there in the room) when he does. He’s not allowed in my room ever again during the rest of my stay.
I often wonder though what I would be dealing with if I had allowed myself to be railroaded or too afraid to have the talk when I needed to based on that past experience.
I honestly can’t imagine having just gone through the evaluation process now with my numbers the way they are & getting hit with everything & listing pretty much all in one breath. It would be too much for me.
That’s why this twinge of jealousy I get is only a momentary fleeting one of actual envy.
I’m more settled with my path as it stands now. Things are unfolding as they are meant.
First … “The Wait” …… I was “on the list” for 18 hours when my family was told they had a call for a heart. I was unconscious for 99.9% of a three week period and when I regained …. really slipped in and out of consciousness it was a 5 or 6 days post transplant. That’s when the nurses “told” me I had a heart transplant. I wasn’t sure what was or wasn’t real until I was out of the ICU and placed in step down. Thus, I can only truly give the perspective of a person that didn’t know he needed a new heart, and didn’t know he had one until after it was all over. Sure, I didn’t have the pains of the wait, but at the same time processing all of this transplant stuff took a long, long time. It is still and most likely always will be a very emotional journey for me.
Docs and staff …… I have always been truly blessed with nothing but the finest, compassionate, empathetic medical professionals. My Doc’s, nurses, coordinators, techs, aids, custodial people all were incredible. World class care!
LikeLiked by 1 person