Fear of the Unknown

Recently, I found another LAM sister came to my center to dual list after essentially getting the run around from another center in NY.  I refuse to name this center but have often butted heads with on how they manage women with my disease.

It was surreal for me this time because even though I’ve had a long tradition of posting messages asking for some good vibes for fellow LAM sisters as they received their transplant calls, they become more poignant now because it’s not just women I know, they are my listing buddies.

I have more than one I’m currently waiting with (we’re listed) or a few who went through an evaluation with me during the time I had mine or shortly after.  Some of them were transplanted before me or will still be potentially be transplanted after me (or even possibly around the same time) so I can’t just say transplant twins because I know there is more than one sister that I’m taking this crazy ride with. In a way that’s comforting too.

It was hard because I knew this sister’s score was close to mine up until very recently but she had already been listed and waiting quite a while. Recently she abruptly took a bad turn & was placed on ECMO.   (NOTE: I know I just linked to a children’s hospital site but I like how they explain ECMO’s working and what it does.)

It shocked me because I had heard my surgeon & others talk about it. I knew she had been dual listed, But one day I see this lovely young woman on video while she was on it talking about her brush with death as I’m perusing my social media feeds.

In a way it saddened me because I know ECMO is used primarily only in these scenarios to buy time to transplant.  On the other hand, it was her.  She always made cute & creative videos talking about her journey & this was no exception.

I knew she would get transplanted much more quickly now as a result of being placed on ECMO because she’d shoot to the top of the list.  (NOTE: The above two links are to an article that explains how they are using ECMO as a bridge to transplant. The one below is from a transplant center site explaining it & showing visual representations.)

Yet, I wish it hadn’t come to that for her. There was a strange sense of comfort in that video.   Seeing that she was still engaging with her family & the world even in the midst of all that.   Before seeing her do that, I wasn’t sure if that was even possible.

I commended her bravery & courage for putting that out into the ether. I’m not sure I’d have the strength at that point. I tend to get very guarded the sicker I become.  It’s just how I am & always have been.

I tend only to be scared of the unfamiliar or the unknown. That was ECMO for me.  So she taught me an important lesson.

I hope to hell I won’t need it, but if I do, I know it’s there & it’s there to help keep me alive. But I may not necessarily be out of it, “not with it”, or just chained to a bed if they use it like I had feared. My friend who was on it was still very much alive & herself. Seeing it in action with someone I knew (hard as that was to witness because I knew what it meant) took some of the sting out.

It turns out I’m drafting this as she’s being transplanted.  I can only hope by the time this ultimately posts that she’s well out of the woods & well on the road to recovery.

Update: My sweet young friend took her first steps post transplant today.  I am floored at how she is bouncing back despite some pain & some post surgical “stuff” going on.  Makes me so happy for her knowing how hard she fought to live.  Also grateful for her donor & her family for bestowing this gift & opportunity. 






2 thoughts on “Fear of the Unknown

  1. She took her first steps today 🙂 slow but sure


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