just need to vent on my unknown condition

I'm 35 years old, and the 3 days that changed my life.

Oct 17th 2016 I went for open heart surgery to fix a dilated aorta with valve sparring as the dilation was directly above the valve. The surgeon, is regarded as the best in Canada at aortic surgery, I was very pleased to have him. The surgeon was happy throughout the entire surgery, everything was normal, and after 4 hours of fixing the dilated aorta and saving my valve the job came to introduce blood back into my heart, make sure it was all functioning as it should, and sow me up. Then it happened. my left side decided it was not going to start contracting. There was no reason for it, so after 3 hours of trying to get my left ventricular operational, the surgeon decided to put me in ICU and wait the following day to see what the options were.

The next day, he decided to attempt a triple bypass in the attempt to get blood flowing through it, and to possibly get it beating and contracting. Still it did not start. So back to ICU I went. The next day, he sent my file to over 100 CV surgeons, across the country, and within the hospitals, and none of them had any idea what had happened after reading the surgical report. I was an anomaly, they had no reason, explanation, or idea why my left side failed, and continued to do so. The LVAD team in the hospital offered to implant an LVAD. However, it was a gamble because LVADS aren't used to do 100% of the work. usually LVAD patients have some kind of output in the left side. mine would be doing 100% of the work. They could not guarantee this would work, if it didn't, I wouldn't leave the operating table. It was simply, this either works, or he passes.

It worked, and I was put in ICU..... my body couldn't cope and I went into a 2.5 month propafol coma. The delirium was so bad, I now have PTSD and often question if this is real or if I'm back in ICU still. The delirium I experienced messed my mind up.

Once I came out of it, I went up to recovery, where I spent a month before I went home...although I wasn't and still don't remain the same person.

everyday this LVAD works is a miracle, and I have been told it could fail me at any moment. I'm in and out the hospital, currently in; was admitted today.

I carry a controller around with me which tells me the rotations of the pump and blood flow....

I had so many hopes, and dreams for this life. I always thought I'd do something amazing, I don't know why, but I did. I always imagined myself as someone who one day would do something great, when in fact, I have done nothing and achieved nothing and now...I am where I am. waiting for a heart, or death. even with a heart, ill be a 35 year old heart transplant patient who likely wont make 50.

I have no meaning...my mind and sanity has been brutalized by the delirium in ICU, my body is tired, so tired, i just want the end to come. Its funny, how life turns out. I don't want this anymore...I want my normal life back. I want to be normal...but the fact is, i'm going to die, I know I wont make transplant..i feel it...my mind has given up, but my body hasn't.

I just want to scream...but instead I just breakdown.

For all the mistakes I made...i regret...

thank you for letting me rant.

i'm sorry you've had to go through all that and are still dealing with it. it sounds terrible.

a reply to: Ghostsinthefog

Your story makes all of my problems seem trivial.

Be blessed.

Wow, I wonder what happened to cause one side to quit pumping? Somehow it must have lost signal or something. Does a pacemaker work for that?

It kind of sucks to hear someone so young have a problem like that. I hope you get a heart and live to at least sixty five.

a reply to: Ghostsinthefog

You are ABSOLUTELY WRONG!

You are VERY IMPORTANT!!!

The knowledge gained from your heart condition will save millions, maybe billions, of people in the thousands of years into the future of humanity! You are priceless and so incredible!

You are Great! Your body will teach us so many medical secrets.
It won't happen overnight, because we are so ignorant right now.

But by studying you, we will unlock many secrets of the Heart and it's neurochemical operations. We will learn how the brain and heart work together better, we will learn how you coped with and experienced this situaiton, furthering our understanding of psychology.

Look at it like this: You are already Dead.
It's just so happened that somehow they tinkered around with you and kept your corpse animated and your consciousness remains within that corpse. So you might look alive, but really, without this tinkering, you're dead.

a reply to: Ghostsinthefog

I absolutely Love you with all my Heart Ghostsinthefog, and I hope you'll consider me a friend in this cold lonely world.

Although I can't say truthfully that you're not alone, at least there is someone out here that will try to fool you into believing that you aren't alone. Me.

I'm not gonna run away or suddenly not care.
I wanna care forever even if you piss me off it's ok, I'm very forgiving and tolerant.
But ah, the double edged sword, maybe my affection will annoy you and piss you off?
Hahaha!

We'll see.

Holy sh!t. That's some powerful stuff. I truly empathize with you.

If you ever need someone to talk to just PM me.

Do you have any kids? Brothers or sisters?

a reply to: Ghostsinthefog

I speak Life over you. Heart, valves, aorta be healed. Mind be free. You are precious and you can be sure that you have made a difference in people's lives. That one small act of kindness, a thoughtful word, a smile - can change another person's life. You are still here and I know you are going to be amazed at the peace, love and healing sensations that are going to start coursing through your body. I believe. In the name of Jesus, Amen.

I think your current circumstances are temporary. A doctor will come along that will figure something out to get your own heart functioning properly again. Or you know they've made great progress with heart transplants. Something will happen to cause everything to be okay again.

It will. In the meantime whatever you do don't give up. Do what you have to do and wait it out. Every fiber in my being sending positivity to you now.

Angelina

a reply to: Ghostsinthefog

I'm going to edit your quote a tiny little bit to remove "ICU" and replace it with "Nashville", lol.

"I have no meaning...my mind and sanity has been brutalized by the delirium in Nashville, my body is tired, so tired, i just want the end to come. Its funny, how life turns out. I don't want this anymore...I want my normal life back. I want to be normal...but the fact is, i'm going to die"

I have these exact thoughts more often than you'd think.
I feel it completely in totality, like I'm falling into this abyss of darkness that consumes my entire Soul.
I feel eradicated and obliterated, and betrayed by God.

And though my situation is totally different than yours, vastly different, it both is about our Hearts. My Heart struggles to beat metaphorically, while yours literally.

I actually think these exact words and feel them 100% as my complete reality:
"I had so many hopes, and dreams for this life. I always thought I'd do something amazing, I don't know why, but I did. I always imagined myself as someone who one day would do something great, when in fact, I have done nothing and achieved nothing and now...I am where I am. waiting for a heart, or death."

But instead of 'waiting for a heart, or death', I say 'waiting for a miracle, or death'.

I dunno what you're going through, I can't know. No one can know but YOU.
But you dunno what I've gone through either.

But here we are, in the same place Spiritually speaking, in terms of facing Death and Fate, facing the proverbial existential crisis, regretting our lives....

I'm so glad I read your thread.
I'm really happy to meet you.

My thoughts are with you brother, whereabouts are you located?
I don't think your story is over yet.

originally posted by: ccseagull
a reply to: Ghostsinthefog

I speak Life over you. Heart, valves, aorta be healed. Mind be free. You are precious and you can be sure that you have made a difference in people's lives. That one small act of kindness, a thoughtful word, a smile - can change another person's life. You are still here and I know you are going to be amazed at the peace, love and healing sensations that are going to start coursing through your body. I believe. In the name of Jesus, Amen.

Amen.

originally posted by: Ghostsinthefog
my body couldn't cope and I went into a 2.5 month propafol coma. The delirium was so bad, I now have PTSD and often question if this is real or if I'm back in ICU still. The delirium I experienced messed my mind up.

I really hope you write down these experiences in a journal or something, or, if you're willing to share it, to write them down here at ATS so we can learn more about your experiences.

I would really love to know what happened and what thoughts and feelings you have had.

Thanks for at least considering sharing it with us, and if you don't, no one's going to be upset about it. Though you must understand I am very interested in your journey.

@Fiverx313 Thank you, I just needed to vent.

@Metallicus Please don't trivialize your worries and problems because of me. Everyone has their own problems, and issues are relevant to the person. I hope anything you are going through gets better.


@rickymouse They have no idea. Up until they tried to restart my heart, everything was normal, my surgeon told me it was extremely routine up to that point. A pacemaker was never an option because my left side literally died, it doesn't even quiver. Its static. The LVAD pump is inside the left ventricle, sucks the blood out once the right side pushes it over, and then pumps it up to my aorta for circulation. This is why I don't have a pulse. I believe at this point there is 3% of the tissue/muscle in the left side that hasn't died, but, it will in time.

@muzzleflash That’s really really nice of you, I’m always happy to embrace a new friend. And thank you for that perspective, I just wish the knowledge they will gain from me could save….me...I know that’s selfish. And no...I dont get pissed off, ever really..so I am sure I wont.

@Tempter All my family live back in the UK. I live in Canada. I have 1 sister, I’m her 2 year old younger brother. No kids, but have a fiancee. Although I hate what I have put her through the last year...and feel guilty, I wish shed leave me because I feel like a burden on her most of the time.

@ccseagull Thank you for your kind words, and faith in my recovery.

@angeldoll Thank you for being positive, but honestly, there is no doctor who can fix my heart, the left side is dead, it’s not functioning at all. It’s just sat there static with no electrical output whatsoever. I go on the transplant list in a few weeks. Well if i decide to not reject it.

@vonclod originally from England but moved to Alberta, Canada 9 years ago

@muzzleflash if there is interest on this forum, subforum for me to use as a journal, of my journey, and the mods dont mind, i’d be willing to share everything.

a reply to: Ghostsinthefog
Ghost, you can beat this. Same thing happened to my dad and he was only given ten years- that was 30 years ago.
It's important to take your time and look at all the options (i know you may not have that much time), talk to other doctors if you can and don't give up. Look man, you made me sign up back into ATS just to convey this message...these people believe in you and so do I, fight even though you may only have a few years, a few months, a few days! You Fight and let the rest of us break down for you! FFS man, my dad made it and he was 55 with a wrecked body so you can too.
If you can get a donor, get it! If not, Fight- don't go into that dark night, rage, rage against that dark night!

Don't let me lose a brother I haven't met yet!

For those interested, my latest xray

Hello, I have read and enjoyed this site for years. Your thread made me sign up up. I am so sorry for your current condition. This may sound like I am a holly roller and I assure you that I am not. I was raised catholic and do not currently attend mass because of the rampant pedophillia- don't need to hear about God and Jesus from someone who may or may not be molesting children. With that said, I have a strong belief in God and Jesus. If you would please try this: while laying down to sleep repeat "Jesus" while deep breathing several times and imagine every cell in your body being repaired from head to toe. I know it sounds cray cray, but you never know.

a reply to: Ghostsinthefog

Sent you a pm

a reply to: Ghostsinthefog

You don't have a pulse?
I didn't realize that.

Did I read what you said correctly?
Like if I check your wrist, no pulse?

I like intuited that, you must have noticed because I said you're dead but you're animated still.

You must have an incredible connection with the Spirit realm, that's why a journal of your experiences will be so valuable to me personally. I also will have questions to spur you to elaborate further and to explore some concepts and then relate back your impressions and experiences.

Your name is Ghostsinthefog so this cannot be a coincidence.
You're like half-ghost currently. An in-betweener.
I'd trust you over any medium or channeler anyday simply because of your condition.
You are physically literally a medium, so how does your mind relate all of this?

Forgive me for being so intrusive but, I'm telling you, you have some really good stuff to share with everyone.
I will offer you what aid I can, and I'm sure others here at ATS will chime in and offer their knowledge as well, so you will get access to whatever it is you don't know much about yet to further jump up your mind to being able to really give us some good ideas to learn from as you go through this experience over the coming years.

No rush or anything, we got plenty of time.
As for me, I'm gonna get my stuff together and head out for the night.
Goodnight everyone.

a reply to: Ghostsinthefog

May the Force guide you to recovery.