Organ Failure & Going with God

Still alive. Not complete Heart/Liver Failure, but sill sad news (for me).

Please pray for me...well, moreso pray for my Right Ventricle to last as long as I can keep her...and overall heart function to at least maintain it's new numbers for as long as possible.

I tend to go with nature and go with God. As I know "he" will guide me on whether to turn to eastern or western medicine or both.

I always go with both. However, with surgeries and transplant conversations? I tend to give it to God and just let go. I have never felt that path is for me. I may change my mind one day.

If you choose to go with God naturally, I want you to know I understand and support you. Western Medicine is a brutal brutal world, built on a foundation stacked against the weak to survive.

So are we the weak? "Disabled" etc? Technically yes.

Literally, by definition. On paper, absolutely.

But what the founders of Western Medicine and Pharma forgot to include was the Will to Live.

The fight of God within us.

And that path is not what any medicine can conquer.

This is all a very long process. Years...unless or until it's not.

So I just live a slow progression of suffering?

Hoping this "curse" or CHD "epidemic" of sudden death doesn't hit me? I knew I shouldn't have googled the current reasons why we are dying. I think I would rather just not know.

But, I have been feeling it for aprox 2-3 years now.

I've KNOWN...and avoided doctors. Still kind of am.

Avoiding the numbers, the percentages, the annoying medical jargon I want nothing to do with associated with my name.

It makes me sick. I don't know who this sick person is. I never have. I struggle with hating her, all while trying to love her to keep her alive.

...read my book - you will understand more, and possibly relate or know someone who relates.

Healthy people tend to want (fast) answers.

This makes us not want to talk to you.

Or, at least not talk about our health.

"kicking the can down the road" continues to be the common phrase amongst all doctors' goals for me.

I truly hope I do not have to face Heart/Liver Transplant until at least 50 - another 10 years. Yet the negative in that is all of my organs will be weaker and older.

Transplant is a dance - we have to choose a window of being healthy enough to (hopefully) survive, and yet qualify as terminally ill - which complex CHD's fall under. Single Ventricle being the top of the list.

Sudden Death being now #1 reason we are dying is also a huge factor. Do I want to keep doing this? For how long?

Maybe just until I can't enjoy life anymore.

We all measure our QOL differently, right?

Food for thought... What measures your quality of life, whether at this point you are deemed "healthy" or not?

Do we risk dying by operation or post-op?

Or do we negate the risk and enjoy life as much as possible with whatever time God has assigned for us?

I won't know until I'm in complete heart and/or liver failure.

I WILL know in that moment.

When I hear those words.

After I collapse and scrape myself off the ground for the millionth time. I know myself. And I know when that day comes, God and my Spirit Team will instantly pour into me - every single answer I need to know.

Until that day.... Let Go and Let God.

Enjoy your life humans.

Earth time is slow...until it's too fast.

-Authentically Stephanie, Author of Quieting the Clock: Memoir of A Girl Facing Death and Chasing Freedom

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*As an actual Professional Published Author and Writer who takes my gifts from GOD very seriously- I feel pathetic everytime I feel I need to say now (due to AI) that EVERY SINGLE WORD you will EVER see from me is from ME - which I am just a vessel of GOD speaking through me/all of us. I gag at the thought of using AI as a writer and I think it should be illegal! As for marketing and fun stuff, sure, but authentic writing should not have to be explained or felt we as writers now have to prove ourselves somehow that our work is in fact, our own works.*

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I absolutely refuse to use any form of AI to write. This takes away the authenticity, creativity, and genuine fun in one of my favorite things-writing. I am ME, not a robot (yet), so until then you will see run-on sentences, and all other writing errors that happen during social media or my Blog Articles. -Stephanie Romer, CHD Legacy,

xx no weapon formed against me shall prosper xx