Just AVOID that stress!

[pellicle]

Hi

I have an apparently normal tricuspid valve, and degenerative calcific AS. 42 IS freakishly young for that. It's so young that I'd wager you have never seen anyone on this forum who is in a similar situation.

if by similar you mean the exact same pathology as you ... perhaps not ... but if you mean similar in needing surgery which sprung upon them without warning in their 40's followed by being on medications for life then I don't think its as rare as you may like to think.

At least one person here has essentially blamed me for my own condition, which I think is a bit harsh.

I don't think I've blamed you for your situation. I would not think that would help in any way. What I've been frustrated by in helping you is your insistence that "noone understands" , "noone has the same situation" , "I'm going to die" and what seems like a frequently stated view that you are cheated (but none of us were nor understand).

You constantly reject any suggestions to look on the positive side and you never even engage with anything anyone says (not just me) that would suggest you are even interested in looking for the positive sides ...

I well know that it can always be worse. There are kids out there with Epidermolysis Bullosa who would likely trade places with any of us here in a heartbeat (as my wife says of that disease, "there are worse things than cancer.")

yet you don't seem to work on that as your "premise" ... as I have said to you in the past, I believe attitude is important if you want to find peace or happiness.

don't know why I'm writing this as you are unlikely to change, but speaking as one who is highly research oriented I do want to do due dilligence on understanding what can be done. But that always only goes up to a point. When I (for instance) uncovered the research on my personal infection the outcomes looked bleak

I wanted to know the possibilities and I found them. From then on I turned to how to make my life as happy as possible with all that I lost .. something which I think you don't have the faintest clue about the magnitude of.

Now 4 years after that (and still on antibiotics) I believe that the only reason I wasn't one of those is that I continue the Antibiotics.

I do not make the point that noone has ever "seen anyone on this forum who is in a similar situation" ... because we all face similar things, just not identical things.

My point has been to suggest that we all here have the sword of damocles hanging over us at some time, but that instead of remaining perpetually looking up in horror at the sword you can learn to get on with it and actually be happy. That is not the same as "putting ones head in the sand" that is actually coming to terms with the facts.

I wish I could help you to see that there are actually ways to not be so morose about it and to accept what you have and be happy, but you do seem to me to be steadfast in viewing the worst all the time.

We get what we get ... you mention you feel cheated by skipping straight from 40 to 60 ... without even engaging in the accuracy of that ... so? You gloss over and ignore when I say "everyone here has had such happen to them" , you never even blink or acknowledge that we have all suffered losses here ... its like none of us exist or matter, our losses are somehow nothing compared to yours as after all, I "never seen anyone on this forum who is in a similar situation"

that is except almost all of us.

My goal in posting here is to help you to become at peace with what is, what is your goal?

 

[Nocturne]

Pellicle, in your opinion, is it OK for a person to ever be upset about a personal tragedy? To ever just be sad and worried?

Once again, you go overboard in trying to portray me as a hopeless case who has given up and cannot see anything positive in life. As if changing one's lifestyle to the point of losing 60 pounds, exercising an hour a day and lowering cholesterol by 50 points (before medication) is hard evidence of a whiner who just wants to complain. A portrait of non-productive despair. Horsefeathers.

I get it -- I openly discussed a topic here in this forum that Shall Not Be Discussed, and you and others are upset at me for breaking an unwritten rule. You *have* to demonize me, to belittle me, to make me out to be the one with a serious attitude problem. I understand. But I do find it curious that by your own admission above, when faced with your own medical issue, you did the exact same thing I did -- looked for likely outcomes and their likelihood of happening. In your chart's case, you found a roughly 50/50 chance of living or dying -- and no doubt you did what you could to improve your odds.

But it's all good. FYI, if there has been a "break in my clouds", as you say, it is specifically because I read as much as I could about That Which Shall Not Be Discussed, and learned that things were maybe not as horrid as they had seemed at first. But we both know what happened the last time I posted evidence of THAT.

You're a good man. And there is a lot of truth in what you say. But your perception of me is colored by anger.

Peace.

 

[Nocturne]

I don't think I've blamed you for your situation. I would not think that would help in any way. What I've been frustrated by in helping you is your insistence that "noone understands" , "noone has the same situation" , "I'm going to die" and what seems like a frequently stated view that you are cheated (but none of us were nor understand).

For the record, you are not the person I was referring to.

I am sure you understand why degenerative calcific aortic stenosis at 42 with an accompanying CAC score of 156 is more worrisome than the same situation at age 65, or AS due to BAV at age 42, all else being equal. And yes, I am aware that all else is not equal -- with many, if not most, of the people here.

And I have never made any statements that no one else on this forum was "cheated", or faced hardship worse than my own, regardless of how it may "seem" to you.

 

[Agian]

Ha, I like how Charlie looks at Mick like he's a prancing d-bag

I like how he probably knows he's prancing like a d-bag, but doesn't care.

 

[cldlhd]

I like how he probably knows he's prancing like a d-bag, but doesn't care.

Sorry for the hijack but on a related note I once read how Mick and Keith were partying late one night into the wee hours and Mick called Charlie saying "where's my drummer?". Keith recommended against it. About an hour later Charlie showed up in a 3 piece suit , punched Mick in the face, almost knocked him out the hotel window then said "don't ever call me your fucking drummer!"

 

[Nocturne]

Sorry for the hijack but on a related note I once read how Mick and Keith were partying late one night into the wee hours and Mick called Charlie saying "where's my drummer?". Keith recommended against it. About an hour later Charlie showed up in a 3 piece suit , punched Mick in the face, almost knocked him out the hotel window then said "don't ever call me your fucking drummer!"

I'm a child of Usenet and I am always a bit irked at all of this business of people getting upset over threads getting "hijacked". Conversations flow naturally; that's part of life.

I had the pleasure of seeing the Stones perform when I was in high school, and it was one of the more memorable nights of my youth.

 

[pellicle]

Hi

Pellicle, in your opinion, is it OK for a person to ever be upset about a personal tragedy? To ever just be sad and worried?

of course it is ... which is why I asked what your purpose in posting was. If you were to say "I'm just venting" then I'd go "ok ... that's fine" ... but as it is its confusing because it appears to my reading of things you seek something.

Once again, you go overboard in trying to portray me as a hopeless case who has given up and cannot see anything positive in life.

well if you read your posts its easy to see how someone would get that opinion ... there is a relentless focus on mobridity, and a total lack of discussion or engagement with raised points.

I get it -- I openly discussed a topic here in this forum that Shall Not Be Discussed,

you resort to this call a lot ... but yet you don't discuss ... this (encouraging) engagement would be the first

and you and others are upset at me for breaking an unwritten rule. You *have* to demonize me,

t

please explain how I demonise you?

But I do find it curious that by your own admission above, when faced with your own medical issue, you did the exact same thing I did -- looked for likely outcomes and their likelihood of happening. In your chart's case, you found a roughly 50/50 chance of living or dying -- and no doubt you did what you could to improve your odds.

no, I did something similar, but not the exact same thing. I would also say that there was an order of magnitude of difference too. I also did not reject outright things which were posted in support. None the less I raised that to demonstrate that I do understand your position and hoped that from that you would begin to listen and engage in discussion. As I've stated clearly my intention is to assist you to find some way to be happy. It would seem to me that I have totally failed and you reject any points I raised

FYI, if there has been a "break in my clouds", as you say, it is specifically because I read as much as I could about That Which Shall Not Be Discussed,

can you clarify for me what "that" is? I'm a little lost as to me there isn't anything which "should not be discussed"

and learned that things were maybe not as horrid as they had seemed at first

well that's good ... I had not read that (but I don't read everything you post. I recall your outright rejection of posts by Dick, Agian, cldlhd and others, To me cldlhd actually made you an offer of assistance and you didn't even offer a comment ... not even "thanks". From the outside its difficult not to see your responces as being dismissive and your focus being introspective and rejective of assistance.

Since this place is about assistance I asked what it is you hope to achieve in the posts you make? It would not appear to be to seek input.

. But we both know what happened the last time I posted evidence of THAT.

I don't recall ... if you want PM me with the pointer to it ...

But your perception of me is colored by anger.

if exasperation at watching a good person descend into the pit of darkness is anger ... but I can't for the life of me see where I'm angry at you. I suspect that this interpretation of my communication is contributed to by the cultural differences in communication between Australians and Americans.

I'm inclined towards rational discussion, when points are wholesale ignored (not even acknowledged as you've done in the past, but not here btw) it becomes frustrating. Perhaps I should simply ignore your posts, but the problem is that I don't like to stand by holding my coat while watching someone appear to be sinking. Perhaps I mistake you drowning for you simply "flailing in the shallows"

None the less, I suspect that much of the "butting of heads" is created by a misinterpretation of what the writer intended by the reader followed by a misinterpretation of the intentions / meanings of the respondant by the original poster.

As you say ... Shalom

 

[cldlhd]

I think a lot of tone and intent can be lost in the written word. I know a lot of avoidable arguments can spring from text messages. Of course there are cultural differences and I'm glad for it as I think it makes the world a more interesting place but the U.S. has over 300 million people and some very different cultures within it's own borders , as many countries do. Point being there's probably more miscommunication attributable to individuality and If the two of you were actually sitting down talking over a cup it would probably be a lot different.

 

[Nocturne]

Probably true cldlhd. I know from experience that I can tend to piss people off in text when emotional issues are being discussed. As for cultural differences, I can't say for sure, but I do work every day with teens from all over the world (ESL teacher), am married to a woman whose parents are from India and who was raised there for part of her youth, and am used to hearing foreign languages spoken around me here and there all day at work and at home. And I've been told on several occasions by people from outside the USA that my attitudes and perceptions are very different from those typical to the USA, so there is that (my family is Acadian, which may have something to do with that). ???

Pellicle, back in the day I would have happily answered every point in every discussion online -- I used to do this all of the time and even got some recognition for it in discussing national and local education policy in public online forums. Even got invited by one of our senators to join him on a local radio program hosted by the charismatic ex-mayor of our Capitol city here, and had more than one editorial published in the local papers (caused a minor scandal with one when I was suspended from work for a couple of days after exposing a major flaw in our testing regime -- it's a long story but I came out on top of that one). But these days, I try to sit less and be more physically active, and arguing things online doesn't help with either of those. Plus I have four kids and two puppies, and my wife just had bariatric surgery, and her parents just went back home to India for the winter, so I am beyond busy lately and often just don't have time to respond to every point.

I will take a moment to thank the person who offered to help me find work, but there is no way I'm moving my family, especially since my wife earns three times what I do at her job as division head of pediatric oncology at the local children's hospital. My earnings are really just spending money. Which is something to be thankful for, I know.

And I liked that bit about "Relax -- Nothing is under control." That's a good one.

But the next person who tells me "It's not the time in your life -- it's the LIFE in your TIME!" is getting gobsmacked. That's one of those sayings -- like, "You never know -- you could get hit by a car tomorrow!" that just lets you know how f*cked you are when someone tries to use it to make you feel better. :^/

* * * * *

"How bad is it, doc?"

"Well... You know, it's not the time in your life -- it's the LIFE in your TIME..."

"Oh Jesus... THAT bad, huh?"

* * * * *

And if the best thing someone can think of to tell me in an effort to cheer me up is that I could die in a car accident tomorrow, then I know I'm well and truly f*cked.

I get the "at least I don't have XXXX" mentally/mantra, but my problem with it right now is that the last time I used that one was when I suffered abrupt and near complete ED as well as a host of psych issues like insomnia and anxiety from extremely low (approaching castrate level) testosterone. My wife told me that I should be happy that at least it wasn't caused by heart disease, and I had a hard time swallowing that one while I waited months to see if the T treatments would help (they ultimately did, for the most part, although I don't think I am or ever will be the same, and it may be that whatever depression and anxiety have lodged themselves in my brain affect how I view my current situation -- I just can't really know). But as time went on and I started to show some improvements, I started to think that yes, maybe I was lucky not to have heart disease, and maybe there was a silver lining to the awfulness I was going through in that the extreme lifestyle changes I was forcing on myself in an effort to correct extreme hypogonadism were going to spare me from life threatening heart disease... And right about then is when my doc heard a murmur, and you know the rest.

So while it may be irrational, I know in my bones what will happen in a few months if I start telling myself, "Well at least I don't have cancer."

But if it's any consolation, Pellicle, I do think I will start to align more with your view of things as the years roll on. I am still getting used to that sword of Damocles, and my mind was in about the worst frame it's ever been BEFORE I learned about my heart.

 

[Agian]

I think a lot of tone and intent can be lost in the written word. I know a lot of avoidable arguments can spring from text messages. Of course there are cultural differences and I'm glad for it as I think it makes the world a more interesting place but the U.S. has over 300 million people and some very different cultures within it's own borders , as many countries do. Point being there's probably more miscommunication attributable to individuality and If the two of you were actually sitting down talking over a cup it would probably be a lot different.

Well said, my man. I didn't know what blowing happy rainbows up one's ass meant, until I came here. My cultural understanding has definitely expanded.
But seriously, allowing ourselves to get upset defeats the purpose of coming here in the first place.

 

[Agian]

BTW I highly recommend the book 'Cardiac Athletes'.

 

[Nocturne]

BTW I highly recommend the book 'Cardiac Athletes'.

Thanks Agian -- will look into it.

 

[cldlhd]

You do indeed have a full plate. No problem on the job offer, not that I'm in a position to hire just that I know somebody who does occasionally. As for your wife's career CHOP ( Children's hospital of Philadelphia) isn't that far.but it was just a thought and I know that's not an easy thing to arrange.
I've learned a few sayings and colloqualisms out here also but I think I communicate better with some of the people from the other side of the earth than some of the people I work with.

 

[Nocturne]

LOL other than a fun trip to London last Summer, most of my experience with English speaking Europeans and Scandinavians is via the online Blood Bowl league I have played in for. Now those people are a great bunch of guys -- and almost completely free of drama, which is interesting when you consider that we're all playing a game which is a fantasy version of football/rugby where part of the strategy is to seriously injure or kill the players on the opposition team! My team blog was voted best in my league of 50 or so coaches back before all this health business started. Pity I haven't had the time or been in the frame of mind to keep up with it.

And Pellicle, saw your great Finnish educator Pasi Sahlberg speak once -- amazing man who has also seen through the schemes of the connivers in the USA who have been trying to use Finnish success in education to warp the American system into something that is about as far from what the Finns actually do as is possible. Absolutely deplorable. But I don't dwell on that stuff so much these days.

 

[Guest]

Well, you can now say you've met one. I am 29 years old & 3 years ago I was diagnosed w/ a murmur related to mild aortic stenosis. Heart problems run on my Mom's Mom's side of the family, specifically my Mom had severe aortic stenosis at 43 & my cousin has had 4 heart surgeries before the age of 22 (aortic & pulmonary valve replacement, coronary bypass, etc). No genetic conditions have been found that might give us some clues as to why us 3 have developed these issues so early in life. It's possibly congenital that has developed over time, but they're not 100% sure. Or I may just be some sort of anomaly! They do see calcification forming & replacement surgery is imminent. I should find out how much it has or hasn't progressed (since 2013) in about a month.

My entire introduction can be found here: http://www.valvereplacement.org/foru...0-introduction

I have an apparently normal tricuspid valve, and degenerative calcific AS. 42 IS freakishly young for that. It's so young that I'd wager you have never seen anyone on this forum who is in a similar situation. Actually, I wish I could find someone in a similar situation that I could talk to, but I haven't -- not here or anywhere else. Most everyone here is BAV, which I'm not downplaying the seriousness of, but it's not really the same thing. At least one person here has essentially blamed me for my own condition, which I think is a bit harsh.

You don't generally get degenerative calcific AS in a normal aortic valve until after age 60. Heck, if I was over 60 and got the diagnosis I have now -- with AS and a CAC score of 156 (about average for a 65 year old male) -- I'd be breathing easy and not even checking out this forum. It'd be a relatively minor thing in my eyes -- a solid concern, sure, but not something I'd be too freaked out about.

I well know that it can always be worse. There are kids out there with Epidermolysis Bullosa who would likely trade places with any of us here in a heartbeat (as my wife says of that disease, "there are worse things than cancer.")

 

[Nocturne]

Read your intro, TLC2U. Thanks so much for sharing! Have you had a CT scan to look for CAC?

Best of luck on your Monday appointment! As my doc (whose bedside manner I am also less than thrilled about) told me, on first discovering AS you are a graph with one data point on it. What you learn after Monday should give you some clue as to how quickly you are progressing. Hope there is some miracle and they see a regression!

 

[Guest]

I have not yet. Unfortunately, fear got the best of me, so the farthest I've gotten is meeting w/ that first cardiologist/echo/TEE in 2013 & this past week's appointment. I'm generally very pro-active when it comes to my health, but I've been struggling w/ debilitating anxiety related to Mom's death. I do feel confident that this new cardiologist will do everything in her power to take care of me.

As far as Monday's appointment.. not sure if you saw my most recent reply on that thread, but one of the fears I'm dealing w/ now is that the stenosis or weakening of my heart has progressed to a level that will require surgery sooner than I'd like. Of course, no one wants to have invasive surgery at any point in their life, but I hope I have at least a few more years before that happens. I'm finally on a really good path to physical, mental, spiritual well-being that I'd like to continue building up my "strength" before I go under the knife.

As far as regression.. I've been told that's impossible (as is stopping or even slowing the progression). Nonetheless, I say affirmation prayers daily. If stress can make us physically sick, why can't being positive have a healing effect? At the very least, trying to lower my stress & remain positive wouldn't hurt anything!

Read your intro, TLC2U. Thanks so much for sharing! Have you had a CT scan to look for CAC?

Best of luck on your Monday appointment! As my doc (whose bedside manner I am also less than thrilled about) told me, on first discovering AS you are a graph with one data point on it. What you learn after Monday should give you some clue as to how quickly you are progressing. Hope there is some miracle and they see a regression!