Is it just me?

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

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ROBO Pop
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Is it just me?

Post by ROBO Pop » January 17th, 2018, 4:57 pm

What is it with people? This weekend I had someone hound me about my decision to forgo a transplant. Now that's old news, but this guy just heard and decided he had to convince me the error of my ways.

Just for informational purposes, he received a transplant a couple years ago. Anyway apparently he feels that we are all alike and whats good for one is good for all.

I was patient and listened before explaining that I had done extensive research and spoke to other transplantees as well as transplant teams at UMC and UCLA. In the end, my family and I decided that path wasn't right for me. Still he wouldn't relent and just wouldn't let me walk away

Now at one point in my professional career, I handled sales for a couple technology companies, but personally hate Sales people. The bad ones waste a lot of valuable time and the good ones sell me crap I don't want or need. I finally conveyed this to him and told him to figure out which he was before taking my leave.

So why do people feel whatever path they choose is right for everyone else and that they must convince us. Highly annoying to me.

If you want to share some facts on a topic ...great but let it go at that let the recipient decide what they do with that information. I see the same thing at support groups and just don't get it.
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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freckles1880
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Re: Is it just me?

Post by freckles1880 » January 17th, 2018, 6:25 pm

I do understand your frustrations. When I was told my cancer was not curable I did a lot of research and actually found a great item that said it was not selfish for someone to not try chemotherapy if they feel it is not for them. It appeared that many "families" think we need to try everything as there my be the cure right around the corner. I had initially told my family and friends that I would not have any chemo. It was suggested by the cancer doctors that chemo could/would lengthen my life somewhat, no numbers available, but somewhat. I did discuss that with my family and said I would try 2 treatments. Just enough for the doctors to get paid the big bucks for them. I had also looked at the side effects and was told that most folks do not get most of them. All suggestions for me were crap as I lost 3 months of freedom. I have even been told I should not have had the ICD turned off. My decision, not theirs.
I still have people telling me I should go back and get more chemo treatments as there is always that cure possible.
I have done my research and am doing what I feel is best for me.
After my heart attack I did have a man who had also had a similar heart attack give me some great advice, no pushing, just his experiences.

As I keep saying. We need support not sympathy nor being told what is best for us by some stranger.

I support your decision Robo and in my case made the same one.

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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ROBO Pop
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Re: Is it just me?

Post by ROBO Pop » January 17th, 2018, 7:01 pm

Thanks Bob I appreciate your perspective. Just don't understand why people can't accept we are individuals and not all the same.

The individuals who received transplants I interviewed during my research all felt nothing but positive about it, but evaluating their lives after and reading between the lines I recognized they want to live at any cost (and I'm not talking financial) and are overlooking some of the less than pleasant aspects. That's their decision and I certainly wouldn't try to deter them, but I'd rather one good day than 10 years of mediocre existence.

I'm in no rush to leave, but no regrets whenever it happens.
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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Colin Pearson
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Re: Is it just me?

Post by Colin Pearson » January 17th, 2018, 11:32 pm

ROBO Pop wrote:
January 17th, 2018, 7:01 pm
I'd rather one good day than 10 years of mediocre existence.

I'm in no rush to leave, but no regrets whenever it happens.
But....

What harm would there be putting yourself on the list.

Think of it this way; if an organ became available that otherwise would be wasted, would you waste it?

I do understand and respect your frame of mind though.

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Ozchrissy
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Re: Is it just me?

Post by Ozchrissy » January 18th, 2018, 7:48 am

I see my surgeon on Tuesday. I have had conversations with all my docs, I now have 2 GP's, one close to where I now live and the other (my long term one) about 25 mins away. Also with my cardiologist. They all agree that the symptoms, weight loss, difficulty swallowing, pain, mucus build up in my throat and other issues I am having are all a bad sign that my cancer has returned. I have been through a fair bit of personal stress the past few months, but I can't convince them that is all it is. I feel I will be moving pretty quickly with tests after Tuesday and will be starting the merry go round again. Luckily with Christmas in between the time I first told my main GP about it, my surgeon was on holidays, and he was back last week and he has pushed me in early. He only works two days in my town, and rarely sees patients for anything less than Cancer, so the fact he rushed me in also is a problem.

Anyway, just pointing out that I really feel like I am a hypochondriac, but if I am, my docs are encouraging me. But in a way it is a good time for me to get my head around things. If the worst comes out of the tests, I have decided I will have palliative care, not intrusive procedures and no chemo. I have already lost 2/3 of my oesophagus and my stomach, so if there is a tumour there is not much room for them to operate. I will allow the endoscopy to check me out and widen my oesophagus if needed, but that is it.

I do not want to be sick from treatment any more. I am not that bad at the moment, I still have a quality of life, and with help that should continue for a while. I am managing my meals and eating well, and if I do have issues, that can be fixed short term.

I have spoken in depth with my daughter and friends, and all are encouraging me. Gosh I am living on borrowed time now, I don't intend to waste any of it. As Robbo and Bob have said, they made their own decisions and are living well with them. It really has nothing to do with others, we have all had our serious issues and coped with them, and got them fixed at the time, but I think there does come a time when you say, enough is enough. I don't think the heart team in Melbourne who did my valve will be happy, but that is just too bad. I will be a blot on their statistics.

Anyway, this is all hypothetical at the moment, but if the worst scenario is presented to me, I will not be surprised like last time. I was originally diagnosed with Stage III Oesophageal cancer, and it will be 6 Years in April, so with the expected 5 year survival rate of 8%, I think I did pretty well.

I will not allow them to give me a time frame, that to me is pointless and just makes me stress. I have been given time frames on two previous occasions, my cardiomyopahy, 5 years, 19 years ago, and then the Cancer. I am not having another limit placed on me. I intend to live life without that hanging over my head.

NOW DON'T FORGET, I COULD BE BACK ON HERE SOON WITH A TOTALLY DIFFERENT DIAGNOSIS, BUT AT THE MOMENT IT DOESN'T LOOK PROMISING. BLOODY DOCS ARE EITHER BEING OVER CAUTIOUS, OR THEY KNOW SOMETHING I DON'T.
“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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freckles1880
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Re: Is it just me?

Post by freckles1880 » January 18th, 2018, 9:08 am

Colin Pearson wrote:
January 17th, 2018, 11:32 pm
ROBO Pop wrote:
January 17th, 2018, 7:01 pm
I'd rather one good day than 10 years of mediocre existence.

I'm in no rush to leave, but no regrets whenever it happens.
But....

What harm would there be putting yourself on the list.

Think of it this way; if an organ became available that otherwise would be wasted, would you waste it?

I do understand and respect your frame of mind though.
I know that this was for Robo BUT. There is so much more than just being on a list. Constant thinking "is today the day I hear?" The long time it would take to heal, take the necessary drugs, have the constant followup and can my body really handle all the stress? This is my opnion.
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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ROBO Pop
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Re: Is it just me?

Post by ROBO Pop » January 18th, 2018, 9:55 am

Bob's absolutely right, there's far more to being on the list than just your name. I already know my decision so why put everyone through that false hope and all the time and costs associated?

I could go into detail what drove my decision, but I really prefer not as I would never want my decision to unduly influence someone else's life and death decision, and frankly it shouldn't matter why I chose this path, others should respect it
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

InSync
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Re: Is it just me?

Post by InSync » January 18th, 2018, 5:54 pm

The process of getting on the transplant list is very extensive, physically and psychologically. Plus, if you have doubts, you won't be accepted at the outset. It is an intense process.

The discussion here does raise a few points that I've been considering. Christs, if you know you won't treat cancer again, would you do any testing beyond the initial diagnostics to determine if it is in fact cancer? That seems a lot like getting on the transplant list with no intention to get a transplant. I've been thinking about that a lot lately. The other question I've been pondering is whether to leave Brady pacing active at end of life. Also, the ventricle pacing.....turn off defib only. Did your doc discuss that, Bob. I'm just thinking about symptom control.......or is that the least symptom when there are other things going on?
Dilated Cardiomyopathy, LBBB, CHF
St. Jude CRT-D 5/12
The beat goes on.....

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freckles1880
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Re: Is it just me?

Post by freckles1880 » January 18th, 2018, 6:07 pm

InSync wrote:
January 18th, 2018, 5:54 pm
The other question I've been pondering is whether to leave Brady pacing active at end of life. Also, the ventricle pacing.....turn off defib only. Did your doc discuss that, Bob. I'm just thinking about symptom control.......or is that the least symptom when there are other things going on?
Yes we did discuss leaving on the pacing. I have never needed the pacing and it was set at 40. If that was all I was getting it would not have been a benefit. Personally, as I have said before, I would rather go via SCA than cancer. Again I have gone through many options and discussed them with my family, cardiologist, and the hospice group they all know how I feel. I don't want to suffer any more than necessary. I will not do anything self inflicting though.
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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TruckerRon
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Re: Is it just me?

Post by TruckerRon » January 18th, 2018, 8:40 pm

The one thing that people rarely talk honestly about is the emotional expense of last-minute cancer treatments. Why should we put our families through emotional roller coasters and ourselves through terrible pain? If that doesn't dissuade you, then sure, fight the good fight as long as you can.

As a girlfriend told me many, many years ago, one-size-fits-all is a terrible idea for pantyhose. One-size-fits-all approaches to medicine are even worse.
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: Is it just me?

Post by Ozchrissy » January 18th, 2018, 11:17 pm

InSync wrote:
January 18th, 2018, 5:54 pm
The discussion here does raise a few points that I've been considering. Christs, if you know you won't treat cancer again, would you do any testing beyond the initial diagnostics to determine if it is in fact cancer? That seems a lot like getting on the transplant list with no intention to get a transplant. I've been thinking about that a lot lately. The other question I've been pondering is whether to leave Brady pacing active at end of life. Also, the ventricle pacing.....turn off defib only. Did your doc discuss that, Bob. I'm just thinking about symptom control.......or is that the least symptom when there are other things going on?
I think you have to have the full diagnosis to enable management of the disease. For example I have a lot of ascites in my abdomen, it looks like I have a Basketball strapped to my stomach. Hip bones sticking out, then the basketball. I take 80mg Lasix every morning and am doing the same in the afternoon as well now. There are other things they can do to drain the ascites, but before that can be done, they do need to know the diagnosis. I agree that it is a pain in the neck getting the testing done, but most of it, besides the down the throat stuff, will be by scanners I hope. I believe it is different with a Heart Transplant, you are having the diagnosis to essentially prolong your life, but in different circumstances, diagnosis can improve quality of life. I am fortunate that all of my treatment will be paid by the Government, including the palliative care side of it. So if it is the worse scenario, then at least I will get accurate, effective care, and like Bob, it can all happen at home.
“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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