Theres NO support

Yeah.....I decided to post m REAL feelings on the "support site".
Well after living 3 years and updating to an ICD/BiVent. pacemaker I still feel as awful as ever.
My kidneys have no shut down thanks to all this heart crap and I have been on Dialysis for nearly a year.
This support crap is for the birds and I will cancel my membership after this posting.
Life sucks with a heart condition.
Oh yes everything will be fine and you quality of life will be so much better. That is Bull!!
Thinking of a pacemaker DON"T DO IT......It only gets worse.
All the liars out there with there big double talk and there 3 dollar words don’t give me your encouragment crap.
I have lost everything because of my condition. My money, my sex, my spirit for life.
Don’t be fooled by these supposed support groups. Its a lie!
If you are on the fence and seeking answers get numerious opinions from professionals not these pshyco wanna be’s!
Don’t do it if there is any doubt. It will only complicate your condition and make it worse.
You want to hear my experiance first hand. Email me at superbuick007@yahoo.com I will tell you my story first hand and brother it ain’t pretty!
These do gooders pukes on here only wish they knew.....don’t let them give you that support crap. Email me I would be glad to share my experiance. Yeah and then you find out Medtronices installs bad PM/ICD leads Nice real Nice!
You darn right I am bitter as hell!! I hate these kinds of sites now.
Good the heck bye.
Marvin Seward
superbuick007@yahoo.com

14 Comments

Sorry

by Angelie - 2008-11-12 06:11:40

You clearly need more support than this website can provide.

I'll pray for peace in your life.

Good Luck

by SMITTY - 2008-11-12 06:11:49


Marvin.

I'm sorry you feel so poorly, but Marvin, I do wish you good luck..

We all know that we win some and lose some, and messages like yours will not stop us from communicating with others that have problems similar to ours and can maybe tell us something that our doctors have failed to tell us. I seriously doubt that any of us ever came aboard here thinking we would find an answer that would make us well.

But just think how lucky you are, you have lived long enough to post your totally unnecessary message.

Again, I wish you good luck,

Smitty

All the best!

by admin - 2008-11-12 06:11:50

It saddens me that we could not help you. In most cases, a pacemaker improves the quality of life for the patient. This is not a gaurantee, and unfortunately it does not help some patients.

I'm not sure of your medical condition or streak of bad luck, but I wish you all the best.

Blake

Sorry

by mytrose43 - 2008-11-12 08:11:09

sorry you feel this way,but everyone's experience is different and this group has been nothing but good as far as i am concerned .
mytrose43

wow, so sad to read of your situation

by pacergirl - 2008-11-12 09:11:01

Hi, for someone only 40 something and having 2 heart attacks I can see why you are feeling bitter as hell. I am so sorry to say this, but.... you need more help than any support website can lend you. I would not walk to, but run to the best therapist you can find.

Sometimes a professional therapist can really works wonders in helping patients with life altering situations.

You have had problems with your heart for awhile... If I were you I would be looking at why I had the heart attacks in the first place. Lifestyle? Family history? Anger control issues? (just to name a few possibilities)

You said yourself in 2005 (if I am not mistaken) that you were confused, depressed, anxious. You also stated that and I quote "I've always been very active and strong...used to being self supportive..." I certainly can see why you are so angry.... like I said before... you need a professional to help you get through this.

Best of luck to you,
Pacergirl

I'm Offended!

by Pookie - 2008-11-12 09:11:05

Firstly, I am truly sorry that you've had such a rough ride, but life is not always pleasant and easy. I can read between the lines and I think I am safe to say that you are very angry at the medical system and the crappy hand you've been dealt, which is understandable.

BUT...I am offended at your comment as this site (in my opinion) is a true source of support for hundreds and hundreds of people...including me. I am not on this site looking for the miracle answer to my medical problems, but rather I come here for moral support from others.

I too have been dealt quite the crappy hand in life (medically). Let's just say having 15 medical diagnosis and not being able to work or even drive a car totally sucks, but life goes on. And Yes, I go thru periods of depression and anger at my situation, but that is only human. I do seek professional help and am not ashamed to share that with anyone...life is tough. When you fall, get back up, brush yourself off and keep going.

My last comment would be: don't be angry with this site because you're having a tough time, this site didn't make your situation worse! Perhaps you should have just ended your membership and quietly closed the door.

Pookie

Tell Us How You Really Feel!

by bobad - 2008-11-12 11:11:59


I say that with a big grin, because I know exactly what you are talking about!

I'm new here, and was pretty desperate when I found this site. From what I've seen so far, there are 2 types of members. Some of us are more in need of technical knowledge for technical problems, and others are looking for moral support to cheer them up. Don't know about you, but I especially value the tech support, because I am so new to this.

The support here is what it is. It's not firsthand from doctors, but is nonetheless valuable. We shouldn't rely on it totally, but let it teach us the right questions to ask. The info I got just today from someone with 100X more experience than me was priceless. You obviously have more experience than me, so I hope you stick around. I need your experience in the worst way. If our advice isn't helping you, maybe yours will help someone here. See you around!

Bob A.

Reality check

by ElectricFrank - 2008-11-13 02:11:51

Look, life is a terminal illness. Every one of us here will eventually die. Some here have experienced being very near death.

I can understand your feelings about having your body give you a bad time. It isn't fun. To make matters worse when you feel lousy you still have to battle the medical establishment.

It is your decision whether to give up or take it on as a challenge. It's the only control you have over your life.

frank

Hi Marvin, remember me?

by Katielou - 2008-11-13 04:11:14

Hi Marvin,

Firstly, It's good to hear from you again although your post really disturbed me. Some years ago after my PM/ICD implant and being diagnosed with SADS I posted a desperate message on this site (which I have just read again) You responded to me and gave me so much encouragement and support (I have also just read your response) I begged for help and you were there for me - I have always remembered your kindness to me at that time and that is the reason I still visit this site. You were the first person to give me the support that I so badly needed and I hope that over the years I have been able to help others here in a similar way.

I don't know what has happened to you over the last three years but I am sad that you are now so unhappy. Obviously you have had a very rough time and I wish there was something I could say to you to help.

I am at a loss for words Marvin but I sincerely hope you can find peace.

Lesley

Moral support

by walkerd - 2008-11-13 07:11:00

Marvin Im sorry that you have been dealt this crappy hand in life, but this site is one of the best support site I have found, people in the same boat, people that can relate to what mostly what you are going thru, I out of the blue was diagnost with chf which is common but further test revealed i had had four or five heart attacks which i wasnt aware had happened, now half my heart is dead and wont come back. the pm/defib gives me a chance if something happens which they say probably will to live, however crappy my life maybe it could be worse i could have not been here, not here to love my wife, my two daughters, my mom, my inlaws, my best friend Ozzy my rottiwelier, and meet new friends. So to blame this site the ways you did are very unfair, I for one have felt better talking to people that are going thru the same thing in a manner of speaking. doctors,nurses, and all the other experts know about conditions but accuatully dont know because they dont go thru it. I wish you all the luck Marvin but please dont be so bitter and blame your problems on sites like this. Like others said you need more than support sites can offer because you wont except support from people that go thru the same things, please get help somewhere, dont give up.
dave

nothing is perfect

by jessie - 2008-11-13 07:11:29

i am here on this earth because i was in the right place at the right time. after four months of feeling horrible and several ekg's and numerous other tests, i walked in to our local small hospital for yet another ekg on a hot august afternoon.before i knew it i was on a cart and a short cardiologist, french canadian proceeded to save my life. my husband was called to get there right away. they were fearful i was going to arrest any moment. i felt resoved to accept whatever was coming and a great peace had come over me. he was having trouble threading the lead in to the heart and i was reassuring him. talk about funny now. every christmas i take him a small gift of gratitude so i can be here to see my children as adults doing there thing in life.i travel with my husband. i am watching two beautiful children grow to adulthood in calgary alberta, my grandchildren. i was given this gift.i look at photos of myself that near fateful summer and i looked like death warmed over. noone noticed not even me. i have had to pick myself up brush myself off and start all ovewr againfor many reasons. i have learned so much from other people here. i am glad i have this choice. others on this site have far more medical problems at the moment but like frank says life is a terminal illness.the people at this site are here to help and i am just so grateful to be a part of it. i hope this helps. i hope you find answers. jessie

Been there

by Peter.Nash - 2008-11-13 07:11:39

Done that got the T-shirt ect. so have a lot of people here on this site...there is nothing you have not got or had/felt that members here haven't experienced.
Having said that I know where you are coming from... the sheer frustration of the mess ups that are inflicted on some of us is mind boggling ..to us we go to the docs and follow the tracks only to find at the other end we are so much worse off.....then when they cant do any more.... they say it is all in your head and handyou over to the do-gooders.. thats when the anger starts to build...the more angy you get the worse you feel until your life is a complete wreck...Therapy helps some but not all and I dont care how good they are they have NO idea of how crushing some of these situations can be.

My advice is go and knock 7 bells out of a punch bag or chops logs and let it out physically.. I bash 6 inch nails into a bit of wood now days I can only make half a nail but it does the job. perhaps I should buy some 3 inch nails.......
I found this site when I was feeling much the same as you do now..... but I chose to see how REAL people could help me that know what they are talking about through experience.
Ok I still get angry at times and feel hard done by like you... cost me money my retirement and overall wellbeing. But there is still a lot to be had.
None of this will help you right now...It's like walking through a minefield you are frightened to step anywhere in case another mine blows up... best not to move unless some one can help you... take a step in anger and Bang!!!!
I am well aware no amount of anger will change anything... so listen to others it really does help... I have made some wonderful friends on this site it is more like a familly.... all you have to do is be big enough to reach out.
I think people here were very kind to you with there comments considering you waded in and "kicked the cat"
That alone should tell you something. Peter.N

Better without the PM?

by auntiesamm - 2008-11-16 06:11:07

Marvin - You have had lots of response to your post. I am not a clinician but seems to me your have a good depression going on. All of us at one time or another have experienced depression - it is nothing to be ashamed of. Have you discussed your anger and feelings with your physicians? Have you considered seeing a medical, clinical counselor? Is your family supporting you? If you do not feel supported by this forum I believe your problems lie much deeper than you think. May 2006 I got my PM on an emergency basis. As soon as I got home from the hospital I was online looking for information and found this forum. It was the best source of knowledge and caring I could have asked for. Smitty & Electric Frank particularly helped me understand the technical side of the PM. I will be forever grateful to these 2 gentlemen and all of the others who have become my extended group of friends.

Have you considered asking your physician to remove the PM? I doubt any physician would but that would make you feel better about things? I will pray for you to get the help you need and hope you can work through all these medical issues. I'm sorry you did not find what you were looking for here. Good luck & God bless.

Sharon (So CA)

stop being bitter

by Coolhandlule - 2008-12-02 12:12:37

Hey how about you stop being so bitter! Try being 21 and in your situation, oh wait.... nevermind im 21...

You know you're wired when...

You make store alarms beep.

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