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Protimenow

VR.org Supporter
Supporting Member
Joined
Aug 10, 2010
Messages
4,632
Location
California
Last year, I had some serious heart rhythm problems. I was hospitalized for nearly three weeks.

The arrhythmias continued, and I was referred to an arrhythmia specialist at UCLA. He had a two week EKG (Ziopatch) study done, then ordered a Cardiac MRI, with and without contrast.

In the meantime, I haven't been sleeping all that well at night, and often take naps mid-day (I thought that this was to compensate for short sleeping times at night).

I just got the results of the MRI.

Apparently, I have myocardial fibrosis, and severe hypokinesis/akinesis (the heart wall doesn't move), and depressed ventricular and right ventricular function.

Dr. Internet tells me that most people with myocardial infarction usually die within 2 or 3 years.

The akinesis is also troubling.

They think that the PVCs may be secondary to cardiomyopathy and a possible myocardial scar. The doctor wants to see me.

If I trust Dr. Internet, do I conclude that my days are numbered in three figures?

I'll wait to see the specialist to get more, real, information.

---

I wanted to go to the 1984 Olympics, but had a job in New York all summer.

I'm not sure if I'll be here for the next Los Angeles Olympics.

---

I'll update this thread when I know more.
 
One thing we can be sure of is death, some avoid taxes.

I expect death will come at a time where it's not expected. In the mean time all we can do is make the best of the present hand we have in the game.

If I trust Dr. Internet, do I conclude that my days are numbered in three figures?
Click to expand...

I doubt you'll get another thousand years.

Best Wishes
 
I don't really trust Dr. Internet - even if the Mayo Clinic or some peer-reviewed papers make certain pronouncements.

I'll wait until I hear from the specialist who ordered the Cardiac MRI before reconsidering things.

In spite of the possible predicted shelf life, there ARE some things that I want to do, while I still can:

Set up a living trust, so my wife is protected when/if she outlives me.

Edit/rewrite a manuscript on one man's experience in the Holocaust - if the pages of his manuscript are still intact.

Transfer the hundreds of hours or never-before-heard audio, and some heard only once or twice - from the 40s and 50s to MP3 or FLAC files so that they aren't lost forever. (And trying to copyright them if it's possible to even make some money from them).

Clear the clutter -- get rid of stuff that I don't really need (or sell a lot of it).

---

And yes, Pellicle, most of us don't really know exactly when out time is up -- but sometimes a 'best by' date is a good thing to know - and sometimes not good at all.

(My father lived into his 90s, my mother into her late 70s, but both grandfathers cashed in their chips in their early 50s, from what I've heard--so, who the hell knows?)
 
Well, I hope Dr Internet is wrong. Sorry to read this. For what it’s worth, prayers for you and your medical team that something can be figured out and done to mitigate the issue. I admire your goals of leaving an impact and making things easier for your surviving loved ones. Easy to wallow and give up. We’ve seen it on these boards even when an easy repair path is clearly identified.
 
Hey protime.
Sorry to be reading about this.
I hope you get some positive and reliable information when you speak to the doctors.
Good luck mate
 
Hi!

Keep in mind that Dr. Internet ALLWAYS announces the worst scenario. Everything looks extremely serious when you google it (or it is that we tend to remember just the worst alternatives). Wait to talk to your cardiologist.

Good luck. You will be fine.
 
Details make a huge difference. It is common to have an area of akinesis after a heart attack (which can be silent). These areas are often associated with ectopic rhythms. So depending on what is found and details like your ejection fraction various things can be done such as an implantable defibrillator or a biventricular pacer. So stay away from Dr. Google and talk to the experts
 
Protimenow said:
Last year, I had some serious heart rhythm problems. I was hospitalized for nearly three weeks.

The arrhythmias continued, and I was referred to an arrhythmia specialist at UCLA. He had a two week EKG (Ziopatch) study done, then ordered a Cardiac MRI, with and without contrast.

In the meantime, I haven't been sleeping all that well at night, and often take naps mid-day (I thought that this was to compensate for short sleeping times at night).

I just got the results of the MRI.

Apparently, I have myocardial fibrosis, and severe hypokinesis/akinesis (the heart wall doesn't move), and depressed ventricular and right ventricular function.

Dr. Internet tells me that most people with myocardial infarction usually die within 2 or 3 years.

The akinesis is also troubling.

They think that the PVCs may be secondary to cardiomyopathy and a possible myocardial scar. The doctor wants to see me.

If I trust Dr. Internet, do I conclude that my days are numbered in three figures?

I'll wait to see the specialist to get more, real, information.

---

I wanted to go to the 1984 Olympics, but had a job in New York all summer.

I'm not sure if I'll be here for the next Los Angeles Olympics.

---

I'll update this thread when I know more.
Click to expand...
I'm not an expert so I can't comment on the question but I hope it's not your time. It sounds like you are doing what you can.
Best wishes
 
Dr. Internets is only a source of info and sometimes not very good info. Find a well regarded Cardiologist even if not local. Cleveland Clinic will look over your records for free and make a recommendation and tell you if they can help. I (and others) swear by them. Get more than 1 recommendation.
 
I'm not trusting Dr. Internet - although the sources that I checked seemed to be legit. But I'm waiting to hear from the specialist.

I'm still doing stuff -- cut a lot of bushes on Sunday - it felt good, and stopped when I cut all I felt like cutting. I haven't moved them all to the trash yet (I REALLY need a compost bin).

Whether or not I'm given an approximate shelf life, this helped me to focus a bit more on what SHOULD be done.

It also helped me to realize that for all this time that I've been working IN the house, I have a perfectly good office in the other side of the house - which I used as an office until I cluttered it up enough to make it unusable - that I can clean out and move my computer, printers, etc. into, so I can get my A-list projects done.

I didn't have good Wi-Fi years ago when I worked out there, but things have improved, I have a lot of access points, and that once major issue may be somewhat moot.

Thanks to everyone for your nice words, and to VitDoc for his take on the thing. I won't consider things to be over - or nearly so - until I get the word from a REAL expert or two - and then I'll try to prove that his assessment is way too low.

This thing has helped me think a bit about work environment, getting rid of stuff that isn't of value (and trying to sell or donate those things that ARE of value), and refocusing. I just hope I maintain this mindset long enough to REALLY clean out that office and start working there; and to focus on those important projects (with, I hope, more of the paying projects like the one that I've just completed).

I'll update this thread when I know more.
 
I'm already looking for second, third, fourth, and maybe more opinions.

I asked my gardener. He had no idea.
Neither did they person who services my swimming pool.
I'm going to take a walk this morning, and stop at Auntie Ann's Pretzels, and see if they can shed any light on things.

All kidding aside, I haven't heard from the arrhythmia specialist at UCLA, but expect to have a teleconference soon.

I've sent a copy of the report to my cardiologist, but heard nothing back.

I've learned why my last ATTEMPTED ablation, looking for a misfiring area in my heart, was fruitless -- my arrhythmia may be more mechanical than electrical.

I wasn't aware that Cleveland Clinic will evaluate my records for free, but can't imagine, for the life of me (no pun intended) EVER getting to Cleveland if they come up with any ideas that differed from the specialist at UCLA.

In any case, I plan to get the unused office cleaned out and set up for some real work - computer under a desk, large monitor (a TV used for this purpose), printer/scanner or two, Sirius XM radio on the desktop, 4 track reel to reel recorder, possibly an overhead scanner, and a handful of USB devices - disk duplicator, keyboard and mouse, hubs, and other things that I can't think of right now. As long as I've got the energy to prep this space, I'll work on this project first.

Again, thanks for your messages, and for the suggestion to have Cleveland Clinic review the materials.
 
Don't believe everything you read. Explore all your options. Dr's don't know it all. Some people are told they only have 6 months to live and end up lasting another 60. And the year figures you're reading are probably avg expectancies - meaning some folks die a day later after diagnosis and others live another 40 years. If you've lasted a day already maybe you'll make it to another 39 years 364 days!

My former cardiologist told me more than once I should be dead. I'm not - at least I don't think I am. Bumblebees fly even though people say they can't etc.

Hang in there and best wishes to you.



I want to ask about this sentence you wrote though:

"Dr. Internet tells me that most people with myocardial infarction usually die within 2 or 3 years"

By "myocardial infarction" in that sentence (which is a heart attack, something I've already experienced and am sure to again in the not too distant future due to my high cholesterol) did you really mean to say "myocardial fibrosis"? Because I've lasted more than 2-3 years after my MI.

Since I had a pretty major heart attack and my heart muscle is damaged I assume I have some degree of myocardial fibrosis too. No arrhythmias yet though, at least not that I know of. And honestly I don't even WANT to know. Because then it messes with your head. Relax. Live.....don't give up no matter what though....and trust the Cleveland C more than Dr. I...
 
Skipkid - good catch. It was Myocardial Fibrosis.

It's possible that I had an MI sometime in the past - I think I ignored it when it happened and went to work. Some doctors have asked me when I had an MI, and my answer was WHAT MI?

The article that I read didn't sound like a 'mean' or average time of 2-3 years - it seemed pretty absolute.

But I won't be at all concerned until I hear from my specialist. Still, this may have been the kick in the butt that I've been needing so I can clean out an old office and start working in there again. Once I'm there, I plan to work on two fairly lengthy projects, interrupted, I hope, by continued paid work.

Thanks again for spotting my error - it was, indeed, fibrosis. My prosthetic valve is working and my other valves looked okay. (The tires are fine, but there are some issues with the engine).
 
Really sorry to hear about that Protimenow. Hoping that when you talk to the specialist you learn more and hopefully it is not as bad as it seems. Please keep us posted.
 
Btw, just remembered this, I think someone I (used to) work with may have something very similar to what you're going through. He is on disability from work now. Was diagnosed about 2 years ago. I still work with his wife but she is on vacation this week; I will ask her next week exactly what it is he has with his heart. I only remember he was having arrhythmia problems and passing out. And that she told me he was a candidate for a heart transplant back then - but that never happened, and he is still kicking as is.
 
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