thanks, but I accept that at my age with my health its unlikely to meet the right person (without all the baggage that comes with becoming single) to ever build a relationship again. The first few didn't work out, so the stats are against me.Here's wishing you that again someday.
Thank you for sharing your story.not at all. If you simply do the numbers (and indeed look at my bio) you can see that my first was when I was 10, back in the mid 1970's technology and surgical technique was not what it is today (the actual first human valve replacement was 1962, so pretty new stuff). Further working on one so young means valve choice (specifically durability and diameter) are very vexing. So I was fortunate to have that done as a repair which allowed the heart to grow naturally. #surgery1
This lasted until I was about 28 and in that time many developments and new ideas were burgeoning in cardiac surgery, so in 1992 I got someone elses valve (a homograft) which lasted me quite well. Because things are what they are in Australia this stuff was done in one hospital in my state and I formed part of this study. Stuff like the title of that (The homograft aortic valve: a 29-year, 99.3% follow up of 1,022 valve replacements.) just don't happen any more. #surgery2
I continued to lead a normal life (lived abroad and travelled a lot) and accordingly missed about the last 10 years of any follow-up. I felt in 2010 I felt that it was time another checkup (and we were going back to Australia) and found that as well as (I'd suspected based on my own evidence) the valve was becoming incompetent I had a rather large aneurysm which needed urgent attention (IIRC 5.6cm) and so after discussions (perhaps too brief for my wife) I saw that the logical course was to have a mechanical with a bental and begin my career on Ratsak. #surgery3
A get well postcard my Finnish friends sent me when I started my career on Warfarin
View attachment 888583
In combination with my prior educational and working career I've managed to make a pretty good fist of managing INR (indeed even help the odd person here and there) ... that we now have point of care machines is even better and indeed entirely makes it possible.
The world of the 1990's with labs and vein draws to manage INR seems rather stone age to me, and in reality managing INR is far less onerous than managing ones blood sugar levels and the administration of insulin.
Frankly I just won't know what all the fhukken fuss is about with a finger stick once a week and taking some pills.
If you search you'll find a ton of my posts on:
View attachment 888582
- measuring INR,
- self managing,
- debunking bull5hit about the horrors of warfarin
take the mystery out of stuff >> self test and know thyself.
Wow! Thank you for sharing her story. That gives me a lot to think about.Maybe, maybe not. Normal people without heart valve disease (like me) can and do develop "trace" valve or even "mild" regurgitation as they age and not require surgery or intervention.
Therein lies the rub when someone has multi-valve disease or only has AV disease and has a ROSS procedure. The diseased valves replaced with tissue valves often don't deteriorate at the same rate and may require surgery/intervention at different times.
My wife had a ROSS procedure and a mitral valve repair in her 1st OHS. So she went from a 2 valve disease (AV and MV) to 3 (AV, MV and PV). It was a long, complex surgery and the surgeon was running out of time and tried to do a quick MV repair (commissurotomy) rather than replace it. 3 years later, her MV repair failed and she had her 2nd OHS to replace it with a bovine tissue valve. Her AV and PV valves were running fine at that time and did not require intervention.
17 years later, her bovine MV was now leaking moderately-severely and required intervention. Her surgeon recommended that her MV be replaced with a mechanical valve and during that same surgery, her AV also get replaced with a mechanical valve to reduce the likelihood of a 4th OHS (note she did get a 2nd opinion with another surgeon who said he would only replace her MV with a tissue valve, not mechanical valve, and would not replace her functioning, but slowly declining, AV and PV valves in that same OHS but she did not go with this surgeon). So in her 3 OHS, she got mechanical AV and MV's, porcine for her PV and a simple repair of her TV (so now she has 4 valve disease).
She lives echo-to-echo (annually) and as of her last report, everything is good but we know that there is good chance her porcine PV valve will need intervention hopefully in the far distant future (hopefully TPVR procedure but who knows) but much less of a chance with her AV, MV and TV's.
So you can see how multi-valve disease can get real complicated and opinions can be drastically different among surgeons as when or if to intervene.
I would second this point
So to me what is happening (observe and calculate while you go on with life as normal) is the best strategy to have. If there is progression then it can be dealt with, if not then just put it out of your mind and follow the observation schedule.
I hope you find this helpful advice from Marcus Aurelius
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I just wanted to say that once we have been diagnosed with valvular heart disease we are often exposed to greater risk of ongoing needs for surgery (especially if it was a genetic origin rather than some disease like Scarlet Fever) as we age. To me the answer has always been to accept this, to be pleased we live in a time when more life can be granted with modern advances and to manage things conservatively.
I don't recall how old your wife was at first OHS, but I hope she got at least 30 good years of life before being introduced to the life including surgery.
you're welcome ... to me, that's what this place is for ... helping others by sharing our stories and hopefully making it all seem less daungintThank you for sharing your story.
interestingly I never really thought of it from that angle. There have indeed been things that I would have put into the "a lot to go through" basket but my surgeries never felt that way for meThat sounds like a lot to go through.
well now, that's indeed quite a question. I honestly don't know, but it seems like a good research topic. Let me get back to you with what I find.I have a question about the blood thinners....is that a concern at all for being on blood thinners?
seems it is as you would expect:is that a concern at all for being on blood thinners?
Quite possibly, yes.So, if the first surgery she had had mechanical valves placed instead, would that have been the only surgery needed?
She sought out several surgical opinions. The choices in 1997 were mechanical, tissue and Ross. As the goal was to get her through child bearing years without anti-coagulation, she choose the Ross procedure while knowing there would likely be other procedures/surgeries down the road.I am sure you couldn't have predicted any of this. That's got to be upsetting. They make the Ross Procedure sound so good... only one to match regular life expectancy, etc.
you're welcome ... to me, that's what this place is for ... helping others by sharing our stories and hopefully making it all seem less daungint
interestingly I never really thought of it from that angle. There have indeed been things that I would have put into the "a lot to go through" basket but my surgeries never felt that way for me
well now, that's indeed quite a question. I honestly don't know, but it seems like a good research topic. Let me get back to you with what I find.
PS ... you may already know this, but I thought this was an interesting article:
Ehlers-Danlos syndrome is a rare disorder, comprising a group of related inherited disorders of connective tissue, resulting from underlying abnormalities in the synthesis and metabolism of collagen. This proposal is specifically concerned with Ehlers-Danlos syndrome classic type (formerly Types...pubmed.ncbi.nlm.nih.gov
Thank you for finding this. I really appreciate it.seems it is as you would expect:
The main cause of death in patients with this type is spontaneous rupture of blood vessels due to fragility of the vessel wall . Based on this fact, permanent anticoagulant therapy would complicate any spontaneous bleeding and could lead to a life-threatening condition....When a surgical correction of the valvular disease is considered, a valve-sparing procedure should be tried if the valve does not suffer structural damage. If a valve replacement is planned, we think that the bleeding tendency of the Ehlers–Danlos syndrome patients should be considered while choosing the valve prosthesis. As we saw in this case, mechanical valve prosthesis with necessary adequate anticoagulation, using long lasting warfarin derivates, could be an unneeded added risk for these patients.
this is significant because there are outcomes no matter what valve type you pick where you may require anticoagulation. Of course its a certainty with a mechanical valve, but even with (so called) bio-prosthesis valves there is a possibility of needing ongoing oral anticoagulation over time.
Seems like its risky ... no matter what you go for.
Ah! That makes sense. We do a lot for the opportunity to have kids.Quite possibly, yes.
She sought out several surgical opinions. The choices in 1997 were mechanical, tissue and Ross. As the goal was to get her through child bearing years without anti-coagulation, she choose the Ross procedure while knowing there would likely be other procedures/surgeries down the road.
Wow, really sorry to read stuff like this.Very sorry to hear of the problems you are having
I would like to add a few comments.
I was told NOTHING about the problems that could happen or what to expect.
My point is ASK about anything and everything that could go wrong. Ask about the aneurysm, if they have not checked already get a new cardiologist.
check this Types and Causes of Aortic Aneurysms | Mount Sinai - New York.
In 1970 at Fort Brag my medical exam the doc said I had a slight heart murmur but said dont worry about it. Man was he wrong In 2008my doc found the same sound and sent me to a specialist. Once the checkup and testing was all done, The specialist said you have an aortic valve that needs to be replaced soon. He really meant SOON, I was on operating table 7 days later.
I also have an aortic aneurysm, they dont always check for it but its common with valve problems. My cardiologist told me I had 2-5 years left and there was no way they could fix it at my age.
I also had stage 3 heart block, so now I have a pacemaker.
OH one more fun thing. they cracked some ribs on the left side, it was the worst pain I have ever felt. My nurse had to put me on a morphine drip to control the pain. They send me home with Oxycodone and yes it is VERY easy to become addicted to it I came very near but recognized what was happening and gave the bottle to wife and ask her to hit it.
They give me a plastic breathing thing that you must use 3 times a day to self inflect the only pain I have felt worse then the cracked ribs above.
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