and back i go

When I first became conscious I wanted this mechanical heart out of me from the start. After my 4 month ICU stink I finally made it to recovery, where I put on a strong face, but I don't and haven't ever since the minutes before surgery felt human anymore. I asked my surgeon what would happen if they took it out, he said you'd simply die as your heart is just dead scar tissue. But you know what, It didn't bother me, I asked him to remove it. My fiancee who was with me every second through this started crying, because she didn't know i felt like that.

He said, he wanted me to see a psychiatrist and therapist and see if that helps me to not feel like that. I did....

I'm back in the hospital with an infected drive-line, my MAP is jumping around, my lung hurt and my breathing hurts, and honestly I still.....want it out. But I don't know how to tell my fiancee or surgeon. I think it would be perfect. put me sleep, remove machine, i don't wake up...I wont live in fear and restriction for my life, and it would take the burden of my family, fiancee and doctors fighting to keep me alive. I'd like to say, I am not suicidal...I am not... I just want the choice to not have a machine in me...I don't know why I am alive anymore, it just seems like i'm alive to spend the rest of my life in the hospital until I die there. I seem to just slowly be wasting away, my body, my mind, and soul is so tired, it so, so tired. in the last 3 days I have had more shortness of breath. which could be a result of blood/oxygen, my right side has now dropped very very slightly, so because its working twice as hard is has more chance of failing. But tomorrow is a new day I might wake up and be glad i have this machine, but eventually the feeling comes back.

I have accepted I have wasted my life, and have done and achieved nothing. I just wish I could turn the clock back. I say it every-time i write, but i beg you all, hug those you love, tell them you love them, don't hold onto hatred, I swear to you, you will regret it.....hate is easy, love and kindness is not. Just be kind....don't make someones journey harder than it already is.

Why do I always spill my heart out here. I think its because you guys let me vent regardless of good or bad. Plus I suppose its a way of permanently leave an online diary to whoever one days finds it.

Anyhow, nurse is demanding that i take my pills now so I will say goodnight.

Love all, talk soon.

Richard

-----------------------------
Oh, and twisted thoughts that spin
Round my head
I'm spinning
Oh, I'm spinning
How quick the sun can, drop away

a reply to: Ghostsinthefog

I wish I had something, anything to say.

a reply to: Ghostsinthefog

I'm glad you made this new thread Ghost. I was wondering how you were. It is late, but I will check in tomorrow. Hugs!

ok. i. never reply health concern threats. there is something special about yours. I suggest you imagine that are half man and half robot heros and they are perfectly good.

and yes, for a while you MUST stop thinking others.

I don’t know you well but I wish you all the luck in the world .

So break a leg .

* Note

The poor attempt at humor in my last sentence. Was my attempt to give you a chuckle because it’s plain to see you could use one .

what is human in you is not your parts, what is human in you is capable of penetrating all non human parts which just as much friendly.

change that avatar to something more colorful will you?

a reply to: Fallingdown

thanks mate.

a reply to: Ghostsinthefog

Ghosts, good on ya for putting it out there. That takes courage, I think.

Consider the possibility (and you alluded to it) that things will get better and one day you will be happy to wake up to your body and your life and you will be so glad that you didn't have your heart removed.

Are doctors even ALLOWED to do that? It may not even be an option for you, to have it removed.

Reaching for God/Jesus in dark times can have a profound effect, even if that's not something you think would help.

Just get through a day at a time, or an hour at a time, or a minute at a time if you have to, until you are clear and at peace about what you want. THERE IS REASON FOR HOPE!

💞💞

a reply to: Ghostsinthefog

Dear Richard - you may be depressed, and if you aren't I'd be really surprised. But, more than that you are tired.

You have been facing huge "what ifs" and living with the possibility of death at any time. You are waiting on a heart which means someone will have to pass on in order to receive it.

Have you ever spoken to a psychiatrist before? If not, it will help you immensely. It is so liberating to put all your worries and heavy thoughts on another person - someone professionally trained to handle such a load. This person many not have any answers for you but he/she will make you feel that it's okay to express whatever you need to without judgement or trying to fix you. This can be healing in itself. Our mind can be a worse enemy than even our own bodies.

I do not think there is anything wrong in wanting to be freed from what you are going through and the constant waiting. No one likes having to stay in a hospital, let alone for the amount of time you have had to endure. I think it is wise to put down on paper what your wishes are, i.e. a do not resuscitate order if this is what you wish. And your fiancé and parents need to know what your wishes are. They love you and you love them, but they must understand what it has been like for you and how you feel. Your wishes should be respected. Don't hide your feelings from them as this will only burden you more, and a loving relationship should always be one in which is truthful and honest.

I pray for you all the time. Our body is only our outside garment to the world. It is our spirit that carries on and you must be true to your spirit in order to have any type of life, whether you wish to carry on, or whether you wish to look at other options. I am always here to talk to if you wish. I want you to know that I always read your posts and wish I could just wipe away all your fears, tears and frustration. If I were there right now I'd read you a book, but first I'd brush your hair and massage your hands (both are the utmost in relaxation I find) and tuck you in. And you would fall asleep with images of the story in your mind. No worries, because I would keep the bad thoughts away and catch all worries in my lock box to destroy afterwards never to enter your world again.

I hope you are dreaming sweetly. 'Night Richard.

CC.

Funny how you say to love others

I'm with others on this. You need to talk to someone, someone that will listen and reply to help, it's a step. Such as a medical professional-psych, counselor,etc., or someone experienced that you know personally. Before hand even looking for help on this site or other(if it applies), hints to you are seeking to remain strong.

It means you have the willpower, encouragement and realization of the situation may benefit as well as what you're attempting now with communication. I know it's the hardest thing to think, but stay strong, for you the most, as well as you have your family, friends, your fiance and others who wish the best for you.

Sorry if it may sound corny or shallow, as I haven't been in your shoes medically, though, rather what I have went through in those closest to me during their journey through life and beyond. It makes average health issues,such as my recent outpatient surgery, seem like just a scrape. Only wish I was half as strong.

Best regards, keep us all updated here

a reply to: Ghostsinthefog

Wow friend..as a medical professional..I understand...but you need to think of it this way if anything.

Sometimes in life...we aren't here for ourselves...but for someone else: ie: your fiance. How much would she suffer without you?

We don't pick our lots in life...don't be selfish with yours: if only to stick around for them.

God bless you...talk to a professional...it's ok to feel the way you do...but you can fix it. If not for yourself....for the benefit of others...

I gotta go now to SAVE some lives today...all that I can, while I still can. Life matters.YOU matter...

Best, M.S.
Emergency Medical/Advanced Life Support

Thanks everyone.

Woke up this morning and my lung and seemed to have cleared themselves out and I'm not holding water anymore, so physically I feel better. Just so people don't worry, I do a see a therapist and a psychiatrist every 2 weeks, it was because when I first came out of CVISU after 4 months, without a beating heart, but still being alive just messed with me so badly mentally I needed to. I still see them I have spoke to them about my feelings of not wanting the LVAD (the machine) anymore, and they both understand my reasoning , as do many of you, but they also encourage me to see the good outcomes, it does help, but my good and bad days are a 50/50 split. The therapist helps me more mentally where my Psychiatrist helps me in the medicine component. (Nabilone, cipralex, wellbutrin, clonazapam).

Today I might find out if I get to go home and anytime soon, so that's something I'm anxiously looking forward to. As a random side not, try to never be put under on proprofol. Being under it over a 4 month period m memory has never recovered, it just like mashed potatoes some days.

Now lets find out what today brings.

Anyhow thank you all for listening (again)

Richard

It's a big decision and you have to work out. I can't even truly comprehend what you are going through. Until you are in that situation you cannot totally understand.

Hang in there ghost, I enjoy your threads and posts and they will disappear if you die. You may eventually get a heart, in the meantime, you can pour out your heart to us.

a reply to: Ghostsinthefog

I see you received some thoughtful replies. I am going out for a while, but will return once again. If you'd like, you can PM me any time! Hugs!

a reply to: Ghostsinthefog

yes, write again. we ll see what we can do. and i hope forum members will join as well.it is always fun to live for the benefit of others. that benefit needs be shared too. i see there are many who is talented here and can provide helpful guidence while i ll enjoy my first involvement in a health concern open invite.

Just want you to know I heard you and you touched me. Your life does have meaning and value although like most of us we don't always have knowledge of it's complexity.

I also have no nuggets of intellect to impart however, I did want you to know you have affected me-I need to reconsider my own value to my existence and need to re-evaluate my life's importance.

I have a feeling most of us need a re-positioning of our stance to ourselves and others.

I am glad you are not sitting back and behaving like a victim. I am glad you know yourself and can share your feelings and I hope those around you are listening to your pain. It is real and it is personal and your severe struggle is on-going.

Wishing you the best-I have no words of wisdom. I do hope you can push through this nightmare and come out on the other side with a new and functioning body and soul-all intact. Hang in there. Sounds like everyone is trying-so glad you are surrounded by caring people.

Maybe you are hanging around for a reason.

Maybe you just made me appreciate things I take for granted.

Teaching people to value, to love and how important health is.

These reasons alone is a life that matters and is of value.

a reply to: whyamIhere

and does he really have to teach these things? i believe no. at least not to that extend. your kid gets a flu and you learn not enough?

originally posted by: Ghostsinthefog
Thanks everyone.

Woke up this morning and my lung and seemed to have cleared themselves out and I'm not holding water anymore, so physically I feel better. Just so people don't worry, I do a see a therapist and a psychiatrist every 2 weeks, it was because when I first came out of CVISU after 4 months, without a beating heart, but still being alive just messed with me so badly mentally I needed to. I still see them I have spoke to them about my feelings of not wanting the LVAD (the machine) anymore, and they both understand my reasoning , as do many of you, but they also encourage me to see the good outcomes, it does help, but my good and bad days are a 50/50 split. The therapist helps me more mentally where my Psychiatrist helps me in the medicine component. (Nabilone, cipralex, wellbutrin, clonazapam).

Today I might find out if I get to go home and anytime soon, so that's something I'm anxiously looking forward to. As a random side not, try to never be put under on proprofol. Being under it over a 4 month period m memory has never recovered, it just like mashed potatoes some days.

Now lets find out what today brings.

Anyhow thank you all for listening (again)

Richard

Pardon - but I don't understand what happened to you. Did you have a heart transplant? Or an artificial heart implanted?

I don't think you will find any surgeon that will 'let you just die on his table' however you can refuse treatment at any time if it becomes too much and let nature take her course.

How long has it been? If an artificial devise - was this a stop-gap until a transplant could be arranged, or ???

I believe that people should have the right to decide when and how they go - but society says no.

May you be:

Happy
Peaceful
and
Well

in body, mind and spirit.