I just don't feel right

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ROBO Pop
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I just don't feel right

Post by ROBO Pop » March 30th, 2016, 10:12 am

...not having a device I just don't feel right, or like I have the right, to comment on posts herein any longer. I recognize that I am in the queue waiting for my disgusting, gaping, festering, pus filled, oozing, massive wound that once held a mechanical heart, to heal but in honesty, I am just not certain what I am going to do moving forward.

My cardiologist feels I am at the end of the line, a CRT will not make a difference, and the only option being transplant, and of course me being ROBO (abbreviation for Robotic) he is pushing for me to get an artificial heart. I know, I know we went down this path a year ago and here I am still occupying space sucking up precious water and oxygen in spite of their hopes. Now just for the record, nobody is going to tell me when to die, I'll decide when it's time. (and no, that's not necessarily alluding to euthanasia). I'm not in a rush to go but also am a strong believer in quality over quantity.

These devices are true life savers and certainly I've benefited as many of you have from ICD technology, so one big question...will I benefit or is another device just going to prolong what is currently misery? My life has become a dreary blur of doctors and bandaids to keep me going, I think even my wife is getting ready to pull the plug I've become so annoying...

But I am getting sidetracked from my topic, why do I feel so sullied when I post a comment to someone's question regarding an ICD? Have I been voted off the island? How does the lovely Suzanne cope?
Broken Heart
Nobody has ever survived life, but I'm trying...
My story and sticking to it
http://www.icdsupportgroup.org/board/vi ... 97&p=91375

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mrag
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Re: I just don't feel right

Post by mrag » March 30th, 2016, 10:25 am

Lexapro
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

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freckles1880
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Re: I just don't feel right

Post by freckles1880 » March 30th, 2016, 10:43 am

ROBO Pop wrote: Have I been voted off the island? How does the lovely Suzanne cope?
I have heard through the grapevine that you are still a Welcome Member. As far as how does the lovely Suzanne cope? it's because she is a lovely lady and without a helmet.

I am sorry you are feeling down and don't blame you. I would hope that as the pocket heals that they will get you another device and keep you around for a long while longer. I need you support to keep some of the troops in line and the team needs your expertise.

wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 54+ years and my daughters.

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Colin Pearson
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Re: I just don't feel right

Post by Colin Pearson » March 30th, 2016, 11:44 am

Robo,

I applaud your openness in talking about this.

That anxiety and low mood thing when it gets hold of you really does keep you in the doldrums. You do of course have perfect reason to feel that way but also hopefully the knowledge and experience to know that it should pass. Saying that, especially with what you have mentioned the quack has said will take a super human effort.

As you may know, I like to cycle and as such am on a few cycling forums over here in the UK. There is one chap who has been through the wars in terms of his heart troubles. He also had an ICD. And on top of that he had VAD heart pump. He used to strap the whole lot up, get on the bike and cycle slowly to the pub! He has since had a transplant.

I'm not really sure what point I am trying make but it is along the lines of no matter how bad a hand you think you have been dealt, there is always someone with a worse hand. Harsh words I know but it helps put things into perspective.

Another thing to consider is that until the lead came away and you picked up the infection, you were feeling a lot better if I recall. I see no reason why that cannot be the same with a new ICD on the other side, once you have healed. As we know the quacks can quite often be overly negative and there are a lot of stories where they are prooved wrong!

Whatever decision you choose to make, same as the last time you were talking about difficult decisions, we are all here to support you not matter what!

Now, where are the Girls, especially that Australian one?

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Kat
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Re: I just don't feel right

Post by Kat » March 30th, 2016, 12:52 pm

in my humble opinion, you have every right to be here. You have been through what most of us have experienced, and then some. It is not through any fault of your own that you do not have the extra metal pieces any longer. It isn't like you refused to have it... instead you have experienced a very rare but very real risk that we all face. And you have lived to share that with us. It is your knowledge and understand that you have to offer the others here.

Absolutely you belong here. You know what it is like to have these devices and you know even more that most of us about how these things can go wrong.

Dont feel bad, you still look like robo to me.
~Kat - Hypertrophic Cardiomyopathy
-That which does not kill us can really mess up our hair!
-Having one near life experience after another.

Intro post: http://www.icdsupportgroup.org/board/vi ... 5694#p5694

Grammaram
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Re: I just don't feel right

Post by Grammaram » March 30th, 2016, 2:21 pm

I can't add much more to what has already been said; it's not about the machine; it's about the man. Keep up the good fight!

Margaret wavhi
Congenital Heart Disease - Tetralogy of Fallot - repaired Sept. 1966
Medtronic Evera S DR Implanted May 22,2014

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David882
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Re: I just don't feel right

Post by David882 » March 30th, 2016, 5:57 pm

Robo:

i was reviewing a bit of what you have been through recently.

Would suggest that your feelings are ... normal?
That does read well but i hope the point is clear.

I think it would a bit surprising if you were not depressed.
Which does not resolve the issue(s) but perhaps reduces the point to the feelings are yours because you are human.

Not a cure but perhaps a reassurance.
With Respect,
David

11 Sept 2012 / Idiopathic Ventricular Fibrillation
At about 2AM I started storming at home, and in the ambulance, and in the ER.
Sometimes I restated and sometimes I had to be defibrillated.
A number of times I went into arrest and stopped breathing.
External defibrillation count exceeded 18 and at some point the team induced a coma.
24 hours later I was revived and have never had another event.
13 Sept 2012 / Medtronic ICD was implanted.
My diagnosis is still idiopathic.

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TruckerRon
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Re: I just don't feel right

Post by TruckerRon » March 30th, 2016, 10:20 pm

Please don't go lest the newbies confuse mrag for the one normal person on this board!
nononono
TruckerRon -- Received Minion I on 17 Sep 2009, Minion II on 26 Jan 2015

Non-ischemic cardiomyopathy
Medtronic Viva XT CRT-D
No shocks yet...
My intro is at: http://www.icdsupportgroup.org/board/vi ... 099#p57099

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Ozchrissy
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Re: I just don't feel right

Post by Ozchrissy » March 30th, 2016, 10:38 pm

Oh my beautiful man. I can honestly admit that I was pissed off with you moodbad moodbad when you disappeared for that time. Alright I was worried as well, but I needed my Robbo around and you just ran away. I know, I know, I know you were very sick, but I didn't care, I wanted to hear from you and know you were still available. So don't you dare try to get out of this board.

As for the new device, crap, would you prefer to wear the stupid life vest for the rest of your life. Who cares what the Doctors say, it will help you in some ways. Don't forget you have had a major infection, and I know personally that will take you a while to get over as well. Look at me, I was told that I should just go home and die as there was nothing they could do for me, and look what happened. I still don't feel like I have had the miracle cure, as I still feel like crap most days, but hey I am not giving up and intend to keep going, like you said, until I am ready to give up.

So my dear friend, it looks like you have a few more weeks of this damn infection and antibiotics. You should think yourself lucky you are a man, I am not sure about other women, but I get vaginal thrush, and since my chemo, oral thrush, and believe me that combined with the hurties of the infection is the pitts. Also with that big infection I had a tube running out of my gut leaking BILE which I had to measure and monitor, change bags and dressings and deal with on a daily basis for about 6 weeks. So yes, infections and other stuff are the pitts, but we have to hang in there.

I sound a bit agro at the moment, and I am. My miracle vale replacement hasn't improved my health as I wanted, oh yes the valve is going brilliantly, but the rest of me is a mess. You are my hero, you just keep on surviving and that is what I EXPECT from you. Don't you dare give up on me, I need you and you need us. So lets just get on with it, and you can yell at me all you like, I am a bit of a cranky bitch at the moment anyway, and I will give it back.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

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xislandman2004
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Re: I just don't feel right

Post by xislandman2004 » March 31st, 2016, 7:27 am

There is no doubt you are at a tough point or time in your life. There for the grace of god, go I. No advice from me Robo... other than there are good days and bad ones. I know it will end one day but I look back at my own life in awe and bask in the glory of it. Now is not the time to let the last of it take away the gift of it...
--dennis

Hypertrophic Cardiomyopathy - Heart failure
First ICD Medtronic 5/16/08
Pulmonary Vein Ablation 9/1/10
Second ICD Medtronic 5/8/12
AV Node ablation 12/23/13
Medtronic Viva CRT-D 4/14/14
Mitral valve replacement 7/14/15
plural and pericardia fluids (2.5 liters) drained 2/16


Coreg 12.5mg x 3


Coumadin 4.0 mg qd
Lasix 40mg x 2
Potassium 10 megs per 20 mg Lasix




Then the lie passed into history and became truth. - George Orwell 1984

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ROBO Pop
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Re: I just don't feel right

Post by ROBO Pop » March 31st, 2016, 10:32 am

Well, I believe I have been properly dressed down by the lovely, subdued woman from OZ. What can I say, a moment of weakness.

I was watching local news and they were doing an article about home health care nurses. The Home care nurse they interviewed was a stunningly beautiful (and I think intelligent) articulate young lady. My own nurse showed up shortly after. Her disheveled appearance, patch over her eye, and acne scars caused a wilting feeling, and when she smiled at me with that shiny front tooth I heard the banjos from deliverance start...my nurse was clearly no Jersy girl. The thought depressed me and I scribbled this thread while still in the throes of depression over that vision. Sorry, won't happen again.

Still thank you all for your support...and not banning me from the island sans implant. and yes, yes, yes, am I sick of this frickin vest. As I'm sure Maureen would attest, the dang thing is a total nuisance, chafes the skin raw, has enough wiring to redo a high rise building electrical system, wants to constantly ride upward and doesn't even support the boobs. (not that I would know that last detail first hand).

Seriously I think the preponderance of mistreatment and BS I received during this whole episode has built up to weight me down. It's most especially disheartening when you've donated so much time to a hospital only to be treated like crap. oops starting down that trail again. Anyway sorry everyone, I'm fine now. :zot:
Broken Heart
Nobody has ever survived life, but I'm trying...
My story and sticking to it
http://www.icdsupportgroup.org/board/vi ... 97&p=91375

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codman59
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Re: I just don't feel right

Post by codman59 » March 31st, 2016, 10:46 am

You just gotta stay here Robo. Many of us will inevitably reach whatever stage you are at in your condition; I've already been to a transplant clinic 4 or 5 times now to try to get some idea of my candidacy down the road for a transplant; at present, I'm not a candidate due to being over-weight and having pulmonary hypertension. If I do manage to lose the weight, I'd probably have to get an LVAD for some time to see if PH would lower enough to get in range. Not looking forward at all to lugging a pump attached to the main waterworks with battery packs and all that jazz. This will be somewhere down the road; at this point I still have mostly good days, but I'm on a boat-load of meds.
My point is a little selfish I guess; I want to learn what you're going through as different things occur and how they affect you. I'm sure others here feel the same way.... besides, we need your wit, and somebody's gotta be a foil counter-thrust for Mrag.
Cardiomyapathy (reason unknown; suspect viral infection 1998), chf, gout, diabetes, asthma, bad hair.
Medtronics Virtuoso VR implanted Aug 28/08, single lead.

"The generation that would change the world is still looking for its car keys" - "The Rainmakers"

Craig

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Suzanne
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Re: I just don't feel right

Post by Suzanne » March 31st, 2016, 12:49 pm

You don't have to decide right now. One day at a time, ROBO.

Are you wearing the vest all day? That's kind of a good test too, how you feel with out it on, meaning no defibrillator.

Did you feel your heart functioned better, as in did you feel better physically with the CRT?

ROBO, you'd never be voted off the island. You're not just family, you're one of our favourite family members.

As for me, I'm here because I'm family too and I'd miss you far too much :big-hug: Plus, I do have some knowledge still to share, like getting drug prices for mrag :wink:
~ Suzanne ~

St Jude ICD and Lead Implanted Feb.20/09
8 Shock Storm March 21/09
Lead Dislodged, so Replaced with Medtronic Lead June 16/09
ICD and Lead Explanted Nov.23/09
Medtronic Reveal XT (Cardiac Monitor) Implanted Jan.25/10...explanted and new one reinserted on July 21/11

Cardiac Monitor explanted Sept.9/14

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Michael L
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Re: I just don't feel right

Post by Michael L » March 31st, 2016, 3:18 pm

ROBO, you will always be welcome! You have certainly been through much more than many of us, and for that I am sorry.

I hope that you find some answers my friend.

Michael
Biotronik Ilesto 7 implanted May 5, 2014
CABG 3X February 1998

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Ozchrissy
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Re: I just don't feel right

Post by Ozchrissy » March 31st, 2016, 7:52 pm

I do like those home nurses. They used to come and brighten my day, and also one of them was into my art and I had to constrain her from buying all my paintings in the spare room. Made a bit of money out of her actually. whewsmile whewsmile

You have every right to be frustrated at the moment my dear man, sorry if I was a bit harsh on you, but I was honest, and you know I am always that, and often regret it later. Keep looking for that sexy nurse to come through your door, there has to be one of them in the pool.
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“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

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