am I dead yet? ...

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

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Leedur
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Re: am I dead yet? ...

Post by Leedur » June 13th, 2019, 8:22 pm

I have had occasional bouts of depression over the years. Not feeling good or lower than usual energy is depressing. Being depressed can make you feel worse. Looking at the future the older we get just means our life here will end some day. So in the meantime if I can find something of interest to distract will help.

Four years doesn't seem a long while ago, I was part of my high school group planning for our 50th reunion. Next year we start planning for a 55th year.....I guess as much as anything, I am looking forward to this process. Any reason to get together with old friends always cheers me up. Last week a classmate died and some of us had dinner after the visitation....was a fun time even though the event that brought us together was sad. Whatever we can find that brings happiness even for a short period......is good. At least that's what works for me.

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wen
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Re: am I dead yet? ...

Post by wen » June 14th, 2019, 9:05 pm

My Dear RoboPop,

I have been busy traveling and increasing my number of grandchildren, so I haven't been on the site for a while. I was quite saddened to read your posts about being so distressed and down-heartened! You are one of my favorite people on here and I seek out your posts to find humor and great writing. You can't let me down now!!

Back when I first found out I was in the early stages of heart failure, I read all the on-line negative stuff, consumed my mind with my horrible plight, and calculated my life expectancy (yes, there's an app where you plug in all your nasty heart data and it tells you when you can expect to go bye-bye). It said I had approximately 11 years. That was 10 years ago. So, I literally wallowed on the floor in self pity, crying my eyes out every day when nobody was around. I thought to myself, "Why me?? I'm a nice person!" Then one day I got tired of dwelling on it. I decided I was no longer going to even look at my ICD site, much less concern myself with my shortened life-span. Guess what happened? Suddenly, my symptoms began to disappear and my doctors couldn't explain it. My cardiology visits have gone from every 3 mos to once a year. My EF has increased. My V-tach has virtually disappeared and the only thing that has changed is my attitude!! Now, I'm not saying my heart is back to normal. My mitral valve is leaking more and my aorta is enlarging, but, I feel better than I've felt in years. I have no doubt that it is greatly due to my positive attitude and decision to just "NOT DWELL ON IT IT ANYMORE!" I highly recommend it!!

Now, before you say, "hey, lucky you". I know you have many additional symptoms that I don't have, so it's easier said than done, but I can't help but think that someone as artistically talented as you (both in art and writing) has a lot to offer this world, and I for one, want to hear about more of your antics!! So, pull up those big boy pants (not too tightly, of course) and do something fun in your day. If you don't do it for yourself, then make someone else smile by painting one of your awesome paintings. They are SERIOUSLY good!! OK, I'm off my soap box.

Hope your tomorrow is better than your today!! Big Hug! :big-hug:

Wendy
Left Bundle Branch Block
Non-ischemic Cardiomyopathy
V-Tach
ICD-Boston Scientific Teligen (2-lead) installed 7-7-09

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ROBO Pop
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Re: am I dead yet? ...

Post by ROBO Pop » June 15th, 2019, 2:30 pm

wen wrote:
June 14th, 2019, 9:05 pm
... You can't let me down now!!

So, pull up those big boy pants (not too tightly, of course) and do something fun in your day.

Wendy
Wow, yes Mam. I certainly wouldn't want to disobey you... point taken. As the infamous Ozchrissy was fond of saying, we all need a kick in the derriere once in awhile.

So glad to hear you're doing so well and are enjoying your grandchildren.
Last edited by ROBO Pop on June 15th, 2019, 2:40 pm, edited 2 times in total.
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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ROBO Pop
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Re: am I dead yet? ...

Post by ROBO Pop » June 15th, 2019, 2:35 pm

By the way, speaking of pulling up pants, my wife recently gave me a big wedgie...and I discovered I like it. Yep, sleeping and breathing a bit better with that wedge propping me up used as a pillow. Only stop breathing 24 minutes per hour now.
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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wen
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Re: am I dead yet? ...

Post by wen » June 15th, 2019, 5:58 pm

Glad to hear you are retaining that sense of humor Robo!
You got this!! And glad to hear your wife is giving you the wedgie!! lmao4dx

Wendy
Left Bundle Branch Block
Non-ischemic Cardiomyopathy
V-Tach
ICD-Boston Scientific Teligen (2-lead) installed 7-7-09

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mykidsmom
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Joined: February 9th, 2012, 5:09 pm

Re: am I dead yet? ...

Post by mykidsmom » June 16th, 2019, 8:55 am

I nominate Wen as the official bum kicker.......great job Wen
I think.....Therefore I am.!!!!!

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ROBO Pop
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Re: am I dead yet? ...

Post by ROBO Pop » June 22nd, 2019, 5:03 pm

My breathing is continuing to degrade and if I sleep 3 hours I consider that a good night. My kids bought me a recliner for fathers day to sleep in but even that isn't overcoming the issues.

I finally admitted to myself and discussed with my wife that I have to stop walking the dogs. Last time I went I had serious doubts whether I could make it back home.

Angina and irregular rhythms are getting to be a real nusience (doesn't look right). Losing weight but fighting edema daily. Lord my feet were so swollen last night the skin felt like it was streached to the point of tearing. Sort of a burning pain.

My wife bless her has started doing some of my chores behind my back because shes worried I'm pushing myself too hard. This morning I was devastated when I discovered her crying and she admitted it's seeing me deteriorate. We knew it was coming, it's no surprise, but still it takes an emotional toll on our loved ones.

oh well, another day in paradise...
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

Leedur
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Re: am I dead yet? ...

Post by Leedur » June 22nd, 2019, 8:47 pm

Robo.....sorry you are having to suffer and your family too. Lost my 89 year old Mom 11 months ago to CHF. She was hospitalized for a few days each of the last 6 months of life. Have you ruled this out....going in for some treatment? They were able to remove significant more fluid than home medications. Also had breathing treatments. Each time they were able to provide significant relief.
What about someone coming to your home for treatment? Sorry for so many questions and know you must have considered all options.

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mykidsmom
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Re: am I dead yet? ...

Post by mykidsmom » June 23rd, 2019, 12:40 pm

Im so angry......i hate knowing your suffering...life isnt blooming fair....the stress your family have irrespective of how well they hide it rebounds on you too.....life is not fair..why do bad things happen to good people....and for the most part your good lol...even if you are a bit on the mischievous side. Lee had some good suggestions but i could see why youd be adverse to them....whod want to go into hospital willingly..isnt there anything this dr of yours can do to help alleviate any of the symptoms god knows hes getting well paid about time he did some constructive work.. do you have any home oxygen???? someone coming to your home too is a good idea...

Love you sweetie....keep writing and remember your painting.....
I think.....Therefore I am.!!!!!

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ROBO Pop
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Re: am I dead yet? ...

Post by ROBO Pop » June 25th, 2019, 12:00 pm

I genuinely appreciate you guys concerns and suggestions, but remember this thread was intended as my swan song in which I am sharing the experience which hopefully will benefit others.

I've been basking in the warmth of something a bit different from my normal potpourri of symptoms and have been struggling for the past few days to voice what it is for everybody, but just couldn't nail it down. Talking about it last night, my wife, obviously the smart one of our team, nailed it. She realized that what is happening is my Mitral valve is failing further and the combination of reduced flow and regurgitation are what I'm feeling.

I don't need no stinking doctor to tell me she's right. In thinking about it I knew she hit the bulls eye. The frequent painful twinges are the valve leaflets binding and causing painful cramps and sometimes the gates slam shut causing even more discomfort. Then there's the regurgitation, I swear the flutters I feel are backflow and bubbles. And lets not forget the whimpy ejection of blood into my oxygen starved body. All combined its a classic heart fart.

I'm telling you this shell we call our body is a real piece of art, but when the warranty expires it's a nightmare for the inhabitants. Well I guess I should say...having a wonderful time and wishing you were here. lmao4dx
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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Colin Pearson
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Re: am I dead yet? ...

Post by Colin Pearson » June 25th, 2019, 12:42 pm

Robo,

You are doing this, like everything you do on here, extremely well, with courage, dignity and humour (humor).

I'm sure you are putting on an extremely brave face behind the helmet lmao4dx

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ROBO Pop
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Re: am I dead yet? ...

Post by ROBO Pop » June 28th, 2019, 11:15 am

Allow me to apologize in advance if I'm repeating myself. And now I forgot what I was going to say...oh yeah

My wife and I have been watching the new Catch 22 on the telly. I saw the original movie and am not enthralled with this new version but at any rate, it made me think of my own Catch 22.

So they keep telling me
1. I cannot have any open heart surgery, it would kill me.

2. My failing mitral valve is going to kill me unless it's replaced

3. The mitral cannot be replaced ...refer to #1

So the question if replacing or not replacing will have the same end results, why isn't it my choice ?
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: am I dead yet? ...

Post by Colin Pearson » June 28th, 2019, 1:39 pm

I'm not sure I understand.

Are you saying you would undergo the surgery and take the risk but they are not giving that option? Or is it vice versa?

I've duck-duck-go'ed it and it seems that it can be done keyhole, so minimally invasive, but still requires you to go on bypass.

As an aside, another good catch 22 type thing on the TV at the moment is the HBO Chernobyl series. A harrowing but completely addictive watch, only five episodes.

Keep fighting the fight Robo consolsmile

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ROBO Pop
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Re: am I dead yet? ...

Post by ROBO Pop » June 29th, 2019, 8:01 am

Colin Pearson wrote:
June 28th, 2019, 1:39 pm
I'm not sure I understand.

Are you saying you would undergo the surgery and take the risk but they are not giving that option? Or is it vice versa?
we saw Chernobyl in it's entirety. Pretty decent movie, though I'm not sure how accurate. My sons in the movie industry and I know well that things are not as they seem. Still well worth the time.

I'm saying I was told by more than a few doctors my valve is failing and will result in my death, assuming my wife doesn't get impatient, but I cannot have open heart surgery because it will result in my death. In other words they have decided and are not willing to cede the decision to me. The classic circular argument.

Real life is so much more amusing than movies
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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mykidsmom
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Re: am I dead yet? ...

Post by mykidsmom » June 29th, 2019, 9:22 am

You see im very confused..i really dont understand at times where these bloomin drs are coming from....shouldnt it be your choice to decided on the surgery......so theyve been telling me for years and i mean since in my 20s i have vascular disease and giving me expiry dates.....several times drs have himmed and hawed about surgeries and in a couple of cases have done surgeries without knocking me out because supposedly im high risk....im still here....anyways last year i had the foot issue, and i was informed in no uncertain form i was going to lose the foot..i apparently have no blood flow to the foot..and with the big talk the drs had with me i fully expected my foot to fall off by itself even....can you do surgery or a bypass or something i asked....and he peers over his glasses and goes nope.....it would take me 6 hrs in surgery and you would not survive that long....cant you do it and keep me awake i asked.....and he was horrified....NOPE.......anyways my poor foot was very upset...it had 15% flow into it...this week...the foots still hanging on......and the blood flow into it is now 85% im glad i didnt get it cut off eh....so when i see the dr soon im going to ask about surgery again..i dont need it but im interested in hearing his opinion hehe...ive actually outlasted some of these drs too eh lol... would you opt for the surgery....
I think.....Therefore I am.!!!!!

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