New terminator

[cldlhd]

I just want to add Seaton and Paliogirl my Surgeon never gave me a choice. I went to my pre op appointment with what l thought was an educated idea of what l wanted and he simply said l see you did your homework but l use something else and l reply what Edwards and he nope l use whatever on the shelf. So my Surgeon was going to use what he thought was best and what he trusted and was most comfortable with Carbometic. It wasn't really up for discussion.

I don't think I would like the "whatevers on the shelf" response . If it was more what type of valve he liked working with better well that's different..

 

[harrietW]

Cldlhd
I did not like that response either and was upset when l left the office however l trusted that was his reaction because of his reputation and the fact this is a man who saves lives everyday for over 40 yrs . I had to trust that.

 

[pellicle]

I'm still surprised that people seem to think that they can know enough about the valves to make an informed decision above and beyond "do I want a tissue vs mechanical valve" (and even then I wonder if its emotional stuff in the heat of the moment).

The surgeons have (like you say) 40 years of readings, research, seminars, surgery, follow ups, working with the valves ... and then someone gets upset if they got Brand X over Brand Y and somehow figures that they are across "all the issues".

Hubris

I'm smart enough to say that I'm out of my depth on the details of the various mechanical valves. I asked my surgeon to consider the On-X but said also in that letter that if he had a better reason to go with another valve that by all means he should do it as I believed he was the expert. I have the ATS / Medtronics valve and to be honest I don't give it much more thought (I mean what difference would it make anyway?).

I mean if you guys know more than your surgeon - then change surgeon!

 

[cldlhd]

I

I'm still surprised that people seem to think that they can know enough about the valves to make an informed decision above and beyond "do I want a tissue vs mechanical valve" (and even then I wonder if its emotional stuff in the heat of the moment).

The surgeons have (like you say) 40 years of readings, research, seminars, surgery, follow ups, working with the valves ... and then someone gets upset if they got Brand X over Brand Y and somehow figures that they are across "all the issues".

Hubris

I'm smart enough to say that I'm out of my depth on the details of the various mechanical valves. I asked my surgeon to consider the On-X but said also in that letter that if he had a better reason to go with another valve that by all means he should do it as I believed he was the expert. I have the ATS / Medtronics valve and to be honest I don't give it much more thought (I mean what difference would it make anyway?).

I mean if you guys know more than your surgeon - then change surgeon!

I largely agree but I think some of it is probably psychological and the desire for control when you've been diagnosed with something you can't. Also there is a fair share of hubris with surgeons and they are human and ,this can sometimes come with age, some surgeons might prefer one 'brand' of valve because that's what they've always worked with or maybe they were considered top shelf 30 yrs ago. I know this analogy is dumbing it down a tad but it's like some mechanics who have been working on cars for 40 yrs say one brand is the best while another says they're junk. There are top rated surgeons who are biased against mechanical valves because of the need for warfarin but that could be because it's out of their field of expertise. Also it's been suggested that maybe surgeons are pushing tissue valves in younger patients as a form of annuity so if they would do something like that-pretty unethical imo- then what if a particular valve company is funding all their research? I like to think it wouldn't factor in but I'm a skeptic.
Basically if he/ she said "whatevers on the shelf" in a joking way and went on to say that they would decide which is best once they get in there based on what fits best or some other criteria or they explained why they liked a particular valve better I'd be fine with that but if it was in a more dismissive way as in " who the hell are you to discuss this" or if it was a genuine " whatever was laying around" I probably wouldn't like it much.
When I mentioned to my surgeon that I might prefer getting a mechanical valve instead of a repair to help ensure a 'one and done' scenario he shot that down big time saying that there is no valve he could put in that would be nearly as good as mine in terms of hemodynamics and resisting infection. I was a little concerned that maybe he wanted to do a repair because that was his thing and it's a more challenging procedure but I trusted him because based on what i'd heard and read about him he was pretty highly rated in the field.

 

[JulienDu]

I
Also it's been suggested that maybe surgeons are pushing tissue valves in younger patients as a form of annuity so if they would do something like that-pretty unethical imo- then what if a particular valve company is funding all their research? I like to think it wouldn't factor in but I'm a skeptic.

Is it common to have surgeons pushing tissue in young patients ?

 

[cldlhd]

Is it common to have surgeons pushing tissue in young patients ?

I don't have any statistics myself I'm just going by some of the things I've read out here and a few other places . I guess the thinking is TAVR will be available down the road but who knows? My surgeon was ok with my choice of mechanical as a backup if repair wasn't viable. He said "warfarin can be a pain in the ***" but I assume he's never been on it and I replied " a second OHS sounds like more of a pain in the *** to me" . I think that sometimes these guys start looking at surgery as not that big a deal because they do it every day and it usually turns out well from their perspective .

 

[Superman]

Is it common to have surgeons pushing tissue in young patients ?

To quote a cardiologist that I saw recently, "It's an annuity for the surgeon." Cynical view, of course.

 

[cldlhd]

To quote a cardiologist that I saw recently, "It's an annuity for the surgeon." Cynical view, of course.

That kind of reinforces my theory that if some surgeons would do that out of greed, which would be pretty egregious, then just deciding which brand of mechanical could easily be influenced .

 

[JulienDu]

It was in my impression that most surgeon would push Mechanical for younger patients and it was only because patient decided to go Tissue that the surgeon would adapt to their need.

You know, it is true when you say that surgery has done tremendous progress, when I compare with my surgery 20 years ago.

This time, my surgery and the hospitalisation was very very easy but surprisingly, the hardest part was not my personal struggle but being surrounded after ICU by older patients that were suffering so much and were having such a hard time to recover. My neighbour was a retired farmer form Alberta, strong guy, had all his head. Well during the night, he had a stroke and you could hear it. He was not able to speak normally, he lot most of his sight and his cerebral capacity went down. Another guy ( he was in his 60's ) had 2 cancers in addition to the OHS, for the 4 days I was hospitalized, he never moved, I could here him suffer then the nurse coming and relieving the pain. When I saw all that, I was just glad I chose mechanical. The operation was so easy that I could have told my self, ah **** it 1 or 2 surgery is no big deal but who knows in what shape I will be in the future. I know that with mechanical I still have risks of redo but at least I would not decide that fate upon me.

That kind of reinforces my theory that if some surgeons would do that out of greed, which would be pretty egregious, then just deciding which brand of mechanical could easily be influenced .

I agree with you. I also agree when Pellicle says that surgeon when they have the chest open, they have the best idea of what to fit. What is very important for us is to understand why the surgeon did that choice. I did not get my first choice valve but I now understand why the surgeon did that choice and this makes me feel good. I would hate to feel that the surgeon went on his little lobbying ( although I knew from the beginning that he had no specific preferences and was putting the 2 valves I chose in a same amount.

 

[pellicle]

I
I largely agree but I think some of it is probably psychological and the desire for control when you've been diagnosed with something you can't. Also there is a fair share of hubris with surgeons and they are human and ,this can sometimes come with age, some surgeons might prefer one 'brand' of valve because that's what they've always worked with

which boils back down to "change surgeon"

 

[pellicle]

That kind of reinforces my theory that if some surgeons would do that out of greed, which would be pretty egregious, then just deciding which brand of mechanical could easily be influenced .

there is little doubt in my mind that some surgeons are motivated by this. However I feel that you can get a feel for the person and get an inkling of if this is true or not for them. I don't think its the reason behind my surgeon.

Then at the end of the day the differences between the specs of the various mechanical valves (or tissues if comparing) is complex and I believe that for every "disadvantge" on one comparison criteria you will find an advantage on another.

I do not really believe that I can understand the significance of the differences, its too complex and too many factors related to the patient.

To be honest NONE of the surgeons are suggesting 30 year old mechanical (haemoglobin smasher) valves, its good reliable choices like current model St Jude or if not that then what they "feel" gives better results. Their feeling will likely be the result of a few dozen patients ... while we are just readers.

 

[pellicle]

Hi

Is it common to have surgeons pushing tissue in young patients ?

while logically I'd steer towards a mechanical in almost anyone under 60 I'd say that my time here has shown me that people themselves are the major problem with this.

I feel that many people (you pick the reasons, I'm only making the exernal observation) are strongly inclined to resist change. Strongly fight against "accepting" and fight to "go back to how it was before". If you talk to the medical staff in spinal injury cases (quadraplegica) they will say these are the ones who will not "make it".

From what I've read here I'm inclined to believe that people who will not change, who will not embrace "things are different now" are probably the best candidates for tissue. If they do not manage their INR properly then they ARE going to be risks for INR related injuries.

Will they "wise up" ... its hard to know. **** here tells of his youth playing "fast and loose" with his warfarin. He wised up when he got a smack from it.

So considering that fewer and fewer people are raised to take responsibiiity for themselves, perhaps the answer is becoming that tissue is the "better" choice.

Myself, I am quite amenable to change (although I ***** about it for a while before I change) as I've lived as a migrant in other nations and am in my 50's planning to become a migrant again. There are always challenges, but of course rewards.

You won't find many people willingly pulling themselves out of a rut (that they even recognise they are in) and taking a chance on making their lives better.

Just in my view:

Lastly I would encourage everyone to take a moment to focus your attention on what this fellow has to say.


http://mpegmedia.abc.net.au/classic/...2014-05-30.mp3

He was a young stockman, a drover. He grew up in the saddle and was making a great business out of the cattle industry until he was knocked from his horse and became a quadriplegic.

Unlike the vast majority of us his life was totally changed (not just take a pill every day and monitor your INR) by his life changing event.

He went with his "changes" and did not pretent he could "go back" or "get better". I would say that his attitude played a strong part in saving his life.

He observes that he really enjoys his life now (yes, as a quadriplegic) and says that he would never have found his calling as an artist if he had not been "injured".

He starts discussing it all at about the 12 min mark (for those who are so busy researching stuff and have not the time to listen to it all).

You can really feel how his life changed.

I liked his comment from in hospital "oh what a hassle" at about 16 min

but mostly his comments: "I had accepted it from day one" (just after the above)

and "if one tends to fight something which is irrepariable then they make it hard upon them selves to make any progress.This is what is and I will make the best of it"

I can only but recommend it to all.

 

[cldlhd]

which boils back down to "change surgeon"

I agree, although an amateur judging the qualties of their surgeons valve making decisions could be nearly as difficult as an amateur choosing valves.
When I first meet a new doctor I try to keep in mind George Carlins old joke "somewhere, someone has an appointment with the worst doctor in the world today" if I feel myself lapsing into the old white coat infallibility syndrome.

 

[pellicle]

I agree, although an amateur judging the qualties of their surgeons valve making decisions could be nearly as difficult as an amateur choosing valves.

Depends ... I feel I can smell arrogance and complacency a mile off ... could be that I kid myself.

I quite like George ... here's a good one

https://www.youtube.com/watch?v=qDO6HV6xTmI

 

[cldlhd]

Good stuff

 

[JulienDu]

Hey guys

It is now been a little bit more than 2 weeks since I had my surgery.

I have been walking a lot and saw huge improvement in my heart, I am not getting tired as I used to be and everyday is better regarding the heart.

10 days post surgery, most of the pain disappeared and I had almost no discomfort at all. I have been very careful in my activity. However 3 days ago, I woke up with pain around my sternum and the pain has not diminished for 3 days. This is around the incision and although most of the time it is rather discomfort than pain, I was surprised that I did not feel that before. When I touch my bones around the incision I do not feel pain, it is mainly when I move and a constant feeling of something heavy. I can not move as well as before.

So I was wondering is some guys felt fine and then experience that kind of pain/discomfort in post surgery ?

Thanks

 

[pellicle]

Hi

I have been walking a lot and saw huge improvement in my heart, I am not getting tired as I used to be and everyday is better regarding the heart.

excellent

10 days post surgery, most of the pain disappeared and I had almost no discomfort at all. I have been very careful in my activity.

good ...

However 3 days ago, I woke up with pain around my sternum and the pain has not diminished for 3 days. This is around the incision and although most of the time it is rather discomfort than pain, I was surprised that I did not feel that before. When I touch my bones around the incision I do not feel pain, it is mainly when I move and a constant feeling of something heavy. I can not move as well as before.

Ok, a few things come to mind, they are not all related to all points.

So addressing each point

when I move and a constant feeling of something heavy. I can not move as well as before

sounds like it could be a paricardial effusion, I would definately seek a discussion with your cardiologist about that, and you may need an X-Ray or some other tests to if they consider this to be an option too. (they will of course know far more than I)

, I woke up with pain around my sternum and the pain has not diminished for 3 days.

Importantly are you seeing swelling or "redness" around the wound? This could be nothing more than as the "volume" of the other discomfort diminishes that this become noticable. Also its often the case that we hold ourselves quite differently due to the injury which causes strain on the other muscles. It presents differently for all. Also just spending too much time sitting with a hunch will do this. I suspect you are doing an amount of "screen time" and you need to be sitting with a good posture (I know as I do screen time for my work).

I strongly recommend you make contact with your cardiologist / surgeon about this as soon as practically possible (preferably before you posted it to us).

It could be nothing, but let us know the outcomes.

 

[JulienDu]

Thanks man for your advice, you must be sick of me between Skype and the forum hahaha.

I saw my GP on Tuesday, told me my pain is normal cause it is like being hit by a car. He said my scar looked good and as of now I do not see any redness or swelling around the scarf. But to be honest, I have a habit of not trusting GP, enough **** experiences told by people around me.
Both my cardio and surgeon are away till Monday.

This could be nothing more than as the "volume" of the other discomfort diminishes that this become noticable.

I think it is a good point, I thought about that too.

Also just spending too much time sitting with a hunch will do this. I suspect you are doing an amount of "screen time" and you need to be sitting with a good posture

Yes you suspect good. And you know what, thinking back about it, I think the pain did increase when I started moving from the coach to a wooden chair and table. My wife told me I was sitting stupid with my shoulders forward.

Like you say, it could be nothing and I am not the one to complain, I just found strange that I reach a point where I was pain/discomfort free and suddenly pain/disconfort came a morning and is not going away

 

[JulienDu]

Just to give an update. I saw my surgeon for the first time since the operation. I am now 3months post-op. He gave me his green light to slowly get back to work. I asked him what he would think if I can go now in Northern British Columbia in the bush for 3-4 months, where the closest small hospital and lab would be 8-9 hours drive. He said he sees no problems and advises me to use common sense, self testing and self management of my INR.

I brought him a very good bottle of Champagne that my family sent me from France and he seemed very pleased by that but besides butchering me well I have really liked the man, his kindness and his approach to patient self determination in a crazy medical world.

So my plan is to leave in a couple days to go back to being very strong in the bush, before coming back in civilization to build log homes where the physical demand is very intense. This forum has been a very great help for this journey. I met some incredible people, read inspiring stories and some like Pellicle offered to listen to my crap on skype for the last 3 months. So I will try to come back on this forum in few months to talk about my experience of living in a remote area with a Mechanical Valve, the pros and cons, hoping that I could contribute with you guys to helping futures valvers.

 

[Paleowoman]

Great news Julien ! Have a wonderful time in the bush - sounds exciting ! Au revoir et bonne chance !