So...

Posts from Jan. 1, 2018 to the present. Plus important announcements. (ICD warning sounds)

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ROBO Pop
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So...

Post by ROBO Pop » August 3rd, 2018, 1:14 pm

would you want to know when...
Broken Heart
Nobody has ever survived life, but I'm trying...
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http://www.icdsupportgroup.org/board/vi ... 97&p=91375

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mykidsmom
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Re: So...

Post by mykidsmom » August 3rd, 2018, 1:25 pm

Personally Yes..if it was a relatively short time id certainly want to know...

what i dont want to know is if all these recent tests have uncovered any other diseases....ive enough to keep me going for 4 lifetimes..

reason id want to know is.....im not given to procrastinating but if i knew i didnt have time to procrastinate...well...and ive told my drs this..and family..but hey the family arent reliable..they keep giving me cpr.,.
I think.....Therefore I am.!!!!!

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Ozchrissy
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Re: So...

Post by Ozchrissy » August 3rd, 2018, 9:31 pm

We had legislative change here in M'arch this year, and I decided to check my paperwork. Can't believe I did it in 2011, and hadn't even checked it since. One of the principles is now DEAD. So, I got onto it and did the forms under the new format that is now available and legally binding.

This of course bought up lots of issues and questions. Especially now that I have Cachexia, the situation has changed. This is something that won't go away and there is no quick fix. I looked of course on the internet and found that the prediction is rather depressing. There are predictions, most of them, of 6-12 months. However, we all know about these predictions, and also I have proven them false on so many occasions.

I will not put my doctors into the position of having to predict how long I have, because they are only able to go by statistics and other peoples response to this. I prefer to look at this as my new normal, and do all I can to maintain as I am now, or improve. Hence the vitamins, amino acids etc. that I have been researching. I ran all that I have found, together with the research papers past my GP (who is really up on cardiology issues) yesterday, and he doesn't see an issue with me doing this. Except, and this applies to you Helen as well, the Amino Acids, or protein supplements. He did a check on my last kidney function, and there were a lot of measurements in BOLD lettering on the report, indicating that my kidneys are not good either, I don't want to know how bad or good, they are just not normal. I am only allowed to take half the recommended dose, every second day now. But heck, that is ok, my body building meds will last a lot longer, and they are not cheap. So suits me.

If I was to believe what the net says about my prognosis, I would be too depressed. Been there done that, and wasted too much time over it. I am now just looking at my skinny frame as an advantage, I can now wear what I like and not worry if any bulges appear. I never have to ask if my bum looks big in this. I also have the advantage that I can eat what I like, and am encouraged to do so by my doctors. Bring on the pork spare ribs, the kentucky fried etc. etc. Also, as I am so well controlled with my heart meds and my device, I really do not have the issues other people with CHF have, I am not bloated, thanks to daily 80mg of lasix and more if needed. I pace myself, and it is now a normal activity level.

I now can see me at this stage of my disease for years, and believe me, neither my GP or Cardiologist are arguing with me. I am sure I will know when it is time, but up until then, I am still enjoying my life, everyone knows I love them, but I am doing it a bit slower. I don't need to do the big bucket list thing, I have done most of that. I also have a date organized with my Lauren, her new car has a roof opening thingy, and we are doing the Great Ocean Road in it, with the window open, and I at one stage will do the Titanic windswept pose from out of the roof. (We will probably be parked, but you can guarantee there will be the ocean and steep cliffs in the background.)
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As an example of how I am dealing with this, I have just had the dilemma of what to have for lunch. I couldn't decide whether I wanted the salt and pepper squid or king prawns. I decided on the prawns, but then had to decide if I wanted them in a garlic sauce or with a caviar/mayo sauce. Oh my, how hard is life. I eventually went with the caviar sauce, easier. I also have not got dressed yet, I have weighed up the pros and cons, and as I am not expecting any visitors, do not have to go out, have decided that today I will just stay in my warm pyjamas, eat my prawns, and watch netflix for the rest of the day. Oh it is a hard life. I have already had 3 phone calls from people I love, and will get more or make more during the day. So who says life is hard.
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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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mykidsmom
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Re: So...

Post by mykidsmom » August 4th, 2018, 10:05 am

In other words chrissie your embracing the New Normal.....and your own capabilities...way to go....id have eaten both the squid and the prawns..but then ive never met seafood i didnt like to eat...(well cept some really ugly fish in south carolina) like you my capabilities have changed....thank god i can walk again after a year of being immobile i can also run...but heres the thing i dont do..i dont waste steps..i look to where im going...i figure out the most direct way and i go.....willies like a lost and wandering child..he goes here there and everywhere until he arrives where he plans to go.....we dont walk together anymore hehe..he says im missing out on things i say his method stresses me..so all im missing out on is stress... in other words were happily married lol...i think being honest its my OCD showing itself lol..
I think.....Therefore I am.!!!!!

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TruckerRon
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Re: So...

Post by TruckerRon » August 6th, 2018, 10:34 am

For most people, being told you're on your way out of life comes as unexpectedly and dramatically as being hit by a bus, but some of us just dust ourselves off and get on with life:

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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ROBO Pop
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Re: So...

Post by ROBO Pop » August 8th, 2018, 10:49 am

Ozchrissy wrote:
August 3rd, 2018, 9:31 pm
I also have a date organized with my Lauren, her new car has a roof opening thingy, and we are doing the Great Ocean Road in it, with the window open, and I at one stage will do the Titanic windswept pose from out of the roof. (We will probably be parked, but you can guarantee there will be the ocean and steep cliffs in the background.)
I suggested all that to Lauren. Told her the best way to dump your ash was through the moon roof near a cliff as she scoots along at turbo speed with the wind whipping through her hair. Of course she went out and bought the car lmao4dx
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: So...

Post by mrag » August 8th, 2018, 4:10 pm

would you want to know when...
Absolutely
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

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ROBO Pop
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Re: So...

Post by ROBO Pop » August 8th, 2018, 4:22 pm

mrag wrote:
August 8th, 2018, 4:10 pm
would you want to know when...
Absolutely
Well alright then...the 23rd sound good? consolsmile

Geez ask somebody who knows lmao4dx
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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Ozchrissy
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Re: So...

Post by Ozchrissy » August 9th, 2018, 8:18 pm

ROBO Pop wrote:
August 8th, 2018, 10:49 am
Ozchrissy wrote:
August 3rd, 2018, 9:31 pm
I also have a date organized with my Lauren, her new car has a roof opening thingy, and we are doing the Great Ocean Road in it, with the window open, and I at one stage will do the Titanic windswept pose from out of the roof. (We will probably be parked, but you can guarantee there will be the ocean and steep cliffs in the background.)
I suggested all that to Lauren. Told her the best way to dump your ash was through the moon roof near a cliff as she scoots along at turbo speed with the wind whipping through her hair. Of course she went out and bought the car lmao4dx
Actually that is not a bad idea Robbo. Lauren has moved (closer to work) to the major town that is at the start of the Great Ocean Road and it looks like she will be there for the duration, so yes, it is a possibility. I would be happy with that, especially the image of her with a big smile on her face and the freedom of the car ride.
“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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ROBO Pop
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Location: the Oval Office

Re: So...

Post by ROBO Pop » August 10th, 2018, 10:25 am

Ozchrissy wrote:
August 9th, 2018, 8:18 pm
ROBO Pop wrote:
August 8th, 2018, 10:49 am
Ozchrissy wrote:
August 3rd, 2018, 9:31 pm
I also have a date organized with my Lauren, her new car has a roof opening thingy, and we are doing the Great Ocean Road in it, with the window open, and I at one stage will do the Titanic windswept pose from out of the roof. (We will probably be parked, but you can guarantee there will be the ocean and steep cliffs in the background.)
I suggested all that to Lauren. Told her the best way to dump your ash was through the moon roof near a cliff as she scoots along at turbo speed with the wind whipping through her hair. Of course she went out and bought the car lmao4dx
Actually that is not a bad idea Robbo. Lauren has moved (closer to work) to the major town that is at the start of the Great Ocean Road and it looks like she will be there for the duration, so yes, it is a possibility. I would be happy with that, especially the image of her with a big smile on her face and the freedom of the car ride.
and there you have it folks, more evidence this site provides valuable service to our members in so many aspects of life.
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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ROBO Pop
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Re: So...

Post by ROBO Pop » August 13th, 2018, 11:08 am

so my good friend Mrag (at least he told me he was my good friend, can I trust him?) brought up an interesting question. He was wondering why some people get word they are dying and go quickly thereafter, while others seem to just drag the process on to infinity and beyond like Buzz Lightyear. Well to be clear what Al said to me was, "you've been saying you are on the way out for a long time, why don't you just do it?" Still interesting question.

So not only do we want to know when, but what happens when it drags on and we annoy our friend ?

One final thought. ~ Guess Tiger isn't ready to give up his clubs yet, he demonstrated he still has some life left in him...golf2
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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Ozchrissy
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Re: So...

Post by Ozchrissy » August 14th, 2018, 6:48 am

I reckon we are just a stubborn bunch here. I know I am, I am rattling around now with all the extra stuff I chuck in my mouth, but heck, I am feeling better and the scales are showing it. Put on 2 kilos. Also I start YOGA next Monday, I was booked in when Lauren had her car accident, and have only now got back to doing it again. Hopefully that will help with the muscles. I went and saw my GP today to suggest we look at my liver and other organs again, as I just want this fixed. Unfortunately they all showed up good results in the last test, 2 months ago. So that is promising and with the weight gain, I am on a roll again. OK skinnier than I want to be, buy hey, that is in some peoples opinion good.
“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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ROBO Pop
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Location: the Oval Office

Re: So...

Post by ROBO Pop » August 14th, 2018, 12:00 pm

Well I guess in retrospect Al has a valid point/complaint. Still I never considered it from someone else' perspective that I'm a big cry baby, I just looked at it as sharing my journey and the humor I see in even the worst of it. I am astonished that my doctors have been quite clear for some time that the prognosis ain't good and yet here I am still pissing off Al by hanging in. I don't know why except I have often wondered if, as Willy Shakespeare postulated life is but a stage filled with actors for my entertainment...hey, my story my interpretation. In other words maybe none of this is real but just a staged reality show for my benefit.

Still, I do often puzzle over life's mysteries. Why the hell are we even here? Is there really a purpose? Why is life not doled out equally to all? and Please my devout friends, those are rhetorical questions and with that I'll just let this topic die :duh:

oh by the way...do I want to know when - no, yet my wife and I have asked several times and all we get is pay your bill on the way out.
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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