New member with the usual dilemma

[Teapotimus]

There are some aspects of mechanical valves I've been curious about. I often come across studies such as

https://academic.oup.com/eurheartj/article/38/45/3370/3813125?login=false

Which concludes
This study demonstrates that outcome after mechanical AVR in non-elderly adults is characterized by suboptimal survival and considerable lifetime risk of anticoagulation-related complications, but also reoperation.

There's no shortage of these studies on the internet with similar conclusions, and this is what the Ross website leans on for example. This is entirely due to INR mismanagement? Every health system in the world can't figure out how to properly manage warfarin?

The other thing I don't often see discussed is long term warfarin induced vascular calcification. Again, there's ample studies on the interwebs about it, but of all the Cardiologists and surgeons I've spoken to, none have mentioned it.

Finally, this may be specific to the USA, but I've met with 5 Cardiologists and two surgeons over the last 4 years (mostly not by choice). Only one of them would even entertain the idea of self regulating INR. My current Cardiologist wouldn't even talk to me about it, just referring to an anticoagulation clinic. I'm aware you can purchase the meter and strips through third parties, but what about the Warfarin? To me dealing with the Healthcare system constantly seems more onerous than actually managing your INR.

 

[pellicle]

I know you block me, so for the benefit of others

Every health system in the world can't figure out how to properly manage warfarin?

that hypothesis is shown to be the case without fail here on VR with people who have recently been to clinics. Its probably compounded by:

• patient side apathy (including denial)
• bureacuracy
• an apparent desire to get patients "stable" so that they can extend out testing to 2 or 4 weeks
• clinicians not even being slightly trained in pharmacology and
• last but not least clinicians being forced to use electronic systems that said health provider pays millions for that promises "70% Time in Range"

The other thing I don't often see discussed is long term warfarin induced vascular calcification. Again, there's ample studies on the interwebs about it, but of all the Cardiologists and surgeons I've spoken to, none have mentioned it.

its been mentioned before and the following are common failings

• sedentary and elderly patients
• patients subjected to poor vitamin K diets (also shown to be a bad idea)
• poor experimental design
• flawed assumptions
• perhaps an agenda

post a few and we can work though them

 

[Deidra]

This study demonstrates that outcome after mechanical AVR in non-elderly adults is characterized by suboptimal survival and considerable lifetime risk of anticoagulation-related complications, but also reoperation. There's no shortage of these studies on the internet with similar conclusions, and this is what the Ross website leans on for example.

It's also quite easy to find studies where mechanical valve replacement results in life expectancy similar to the general population: https://www.annalsthoracicsurgery.org/article/S0003-4975(07)00667-4/fulltext

Two hundred six BAV patients (mean, 53 ± 14 years, 84% male) underwent composite aortic root replacement between September 1987 and May 2005.​

​

Sixty-one percent had a mechanical valve Bentall prosthesis; in 39%, a biologic valve was implanted.​

​

Long-term survival was 93% after 5 years and 89% after 10 years. Discharged patients enjoyed survival equivalent to a normal age- and ***-matched population and superior to survival reported for a series of patients with aortic valve replacement alone.​

​

https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.110.947341

​

We selected 918 Ross patients and 406 mechanical valve patients 18 to 60 years of age without dissection, aneurysm, or mitral valve replacement who survived an elective procedure (1994 to 2008). With the use of propensity score matching, late survival was compared between the 2 groups.​

​

Linearized all-cause mortality rate was 0.53% per patient-year in the Ross procedure group compared with 0.30% per patient-year in the mechanical valve group (matched hazard ratio, 1.86; 95% confidence interval, 0.58 to 5.91; P=0.32). Late survival was comparable to that of the general German population.​

​

I think the takeaway should be that no one study or even meta-analysis can properly capture the truth of the matter. There are so many variables, ones that are seemingly often overlooked by the authors. In recent years, there have been more and more studies, mostly from Europe, showing that mechanical valves have survival rates identical to the general population with the development of better surgical techniques and INR self-testing/management.

​

This is entirely due to INR mismanagement? Every health system in the world can't figure out how to properly manage warfarin?

No one is saying every single health system in the world can't figure out how to properly manage warfarin. It's a combination of poor patient adherence and medical mismanagement that varies highly from person-to-person and clinic-to-clinic. Not every ACT clinic and cardiologist is incompetent in this regard. Not every patient has poor adherence. But when these things can cause life-threatening events like strokes or hemorrhages, it's important to take into account, and this influences the data. https://pubmed.ncbi.nlm.nih.gov/15222277/

​

PSM (patient self-management) resulted in a significantly more stable oral anticoagulation therapy (OAT), which was the strongest predictor for a low complication rate after valve replacement surgery. Lower rates of thromboembolism (0.9 versus 3.6% per patient-year; pt-yr) and bleeding (4.5 versus 10.9% per pt-yr) (p < 0.001) were seen in PSM subjects than with conventional INR management. A switch from conventional to PSM resulted in a 30% reduction in complication rates in the German Experience with Low Intensity Anticoagulation (GELIA) study.​

​

Anecdotally though, I've seen countless stories on here from people who were mismanaged or treated poorly by clinics. Testing every 4 weeks in and of itself seems incredibly irresponsible to me.

​

Finally, this may be specific to the USA, but I've met with 5 Cardiologists and two surgeons over the last 4 years (mostly not by choice). Only one of them would even entertain the idea of self regulating INR. My current Cardiologist wouldn't even talk to me about it, just referring to an anticoagulation clinic. I'm aware you can purchase the meter and strips through third parties, but what about the Warfarin? To me dealing with the Healthcare system constantly seems more onerous than actually managing your INR.

It's not too hard to find a PCP or online ACT service that will prescribe you Warfarin if you self-test and report your results here in the USA.

My cardiologist is supportive of self testing, but I have heard that most don't. The laws here do make it convoluted in that you have to go to a clinic for 3 months before they can prescribe you the materials for self-testing. It's clear that the trend hasn't caught on here like it has in other places, and I wouldn't be surprised if part of it is financial influence from the ACT clinics/services.

The thing is is that you'll have to deal with the medical system whether you get a mechanical valve or not. Once you are on Warfarin and self-testing/going to a clinic, it's pretty straightforward. At least, it has been for me anyway. But yes, the medical system and associated bureaucracy isn't fun to deal with.

 

[Teapotimus]

I think the takeaway should be that no one study or even meta-analysis can properly capture the truth of the matter.

I agree with this, it is ubiquitous in medicine it seems, doctor A says it's x and doctor B says it's definitely not x, or so I've experienced.

My cardiologist is supportive of self testing, but I have heard that most don't.

Yes, I had the same experience, so far the only one I've spoken to who has been willing to even talk about it.

The thing is is that you'll have to deal with the medical system whether you get a mechanical valve or not.

To some degree, though I would argue the other options have far less interaction, on a daily basis anyway.

Regardless I'm not due for a replacement anytime soon it would seem. Depending on the results of my next imaging my Cardiologist and I are planning to reduce the visit frequency, which will be a nice change of pace from biannual imaging. Judging by my continued lack of any symptoms and further increased exercise tolerance I have a good feeling about it.

 

[pellicle]

Evening

Not every ACT clinic

as a discussion point:

https://usafacts.org/articles/a-cap-on-insulin-costs-benefits-millions-of-americans-with-diabetes/

More than 37 million Americans have diabetes and about 7.4 million adults take insulin, a hormone that regulates glucose and is used to treat diabetic patients. But insulin can be expensive for some patients across the United States.​

just using this (not the other arguments on that page) there are probably more warfarin users (some estimates are over 20 million) but somehow it just never gets the attention it deserves. Apparently I'm not the only one who feels this way

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2706162/

Throughout most of warfarin’s 50-year history, physicians have tried to calculate the optimal dose for individuals by using algorithms that factor into account gender, age, height, weight, race, evidence of liver disease, other drugs being taken, and the baseline International Normalized Ratio (INR), a measure of how quickly a person’s blood clots.​

that's 2008 btw ... and yet rather than look for simplicity people have tried to complicate the matter involving genetic analysis of various mitochondrial enzymes (p450).

If I could be stuffed to deal with all the issues I've given strong consideration to my PhD in this area ... but I already see that its pretty pointless.

 

[Superman]

I’ve had some bad clinics over the past 33 plus years. The worst are the ones that don’t listen to the patient. I’ve gone so far as to simply take note of their recommendation, do my own thing anyway, then test in range.

I was fortunate in the late 1990’s to have a PCP that was more in tune with the very individual nature of how warfarin is metabolized. We had a great partnership and he’d take my feedback and write for whatever I needed. The goal was to be in range, not in control. This was before home testing.

But I’ve also had clinicians that I’ve asked, “How long have you been doing this? A year? Two? Okay - I’ve got 15 years (or whatever) experience with just me as the patient. Trust me on this.”

 

[pellicle]

I was fortunate in the late 1990’s to have a PCP that was more in tune with the very individual nature of how warfarin is metabolized. We had a great partnership and he’d take my feedback and write for whatever I needed. The goal was to be in range, not in control. This was before home testing.

this is key to success and goes some way towards explaining why so many clinics are crap.

• totally impersonalised
• treat everyone as generic
• regimented and bureaucratic
• unidirectional communication flows (implied by bureaucratic, but I wanted to make it clear)
• not in tune with anything
• its not a partnership (your the subject)

Further rather than get people on board they actively want to de-capicate you, they want to get your compliance by coercion, intimidation and fear not engagement.

Thus most clinics on the planet fail long term.

 

[tjay]

Hi everyone!
Male, late 30s, based in the Netherlands. I've always been quite active and sporty. I've been running regularly for years, have completed a couple of marathons etc. I also enjoy hiking, playing tennis and just being active in general.

A couple of years ago, I started feeling unwell, tired, more anxious, intolerant to heat etc etc (it was really a whole list of symptoms) and I couldn't handle as much exercise as I was used to. Fast forward to this year, I finally managed to get a referral to an excellent cardiologist who has diagnosed me with dysautonomia and wanted do some follow-up tests to rule potential heart issues out. A month ago, while performing an echo of my heart, he noticed that I have a Bicuspid Aortic Valve. He also said that something (maybe the aortic annulus?) is dilated to 42mm, while it should ideally be under 38mm. Furthermore, there's some regurgitation going on, the severity of which he described as being at 2 (on the scale from 1 to 5). He has now referred me to his colleague, who specialises in cardio genetics. Unfortunately, the waiting list is rather long, and therefore I won't be able to see him till the end of August, most likely, which is causing a lot of anxiety, naturally.

1. How likely is it that I will need a surgery within a year or so?
2. I know this topic has been discussed at length already, but which procedure/valve would be recommended for someone of my age, knowing that my priority is to be able to run and play tennis afterwards? I'm quite terrified of the ticking sound when it comes to the mechanical valve, and therefore was hoping that either Ross or Ozaki would be an option, perhaps?
3. I was told that in the meantime, I should not lift weights, but can still do some running at a relaxed pace and play some tennis (but not competitively). Statistically speaking, how high are the risks here?
4. Any tips or tricks in terms of dealing with the waiting and anticipation anxiety?

Thank you!
42195

I’m not sure if anyone yet answered your question #1, but your chances of having a valve replacement surgery in the next year based on your results is negligible:

“aortic annulus?) is dilated to 42mm, while it should ideally be under 38mm. Furthermore, there's some regurgitation going on, the severity of which he described as being at 2 (on the scale from 1 to 5).”

There may be other attributing factors for your symptoms but 42 mm for aortic root or ascending aorta, or regurgitation of 2/5 is not anywhere close to any surgery criteria.

 

[slipkid]

Hi everyone!
Male, late 30s, based in the Netherlands. I've always been quite active and sporty. I've been running regularly for years, have completed a couple of marathons etc. I also enjoy hiking, playing tennis and just being active in general.

A couple of years ago, I started feeling unwell, tired, more anxious, intolerant to heat etc etc (it was really a whole list of symptoms) and I couldn't handle as much exercise as I was used to. Fast forward to this year, I finally managed to get a referral to an excellent cardiologist who has diagnosed me with dysautonomia and wanted do some follow-up tests to rule potential heart issues out. A month ago, while performing an echo of my heart, he noticed that I have a Bicuspid Aortic Valve. He also said that something (maybe the aortic annulus?) is dilated to 42mm, while it should ideally be under 38mm. Furthermore, there's some regurgitation going on, the severity of which he described as being at 2 (on the scale from 1 to 5). He has now referred me to his colleague, who specialises in cardio genetics. Unfortunately, the waiting list is rather long, and therefore I won't be able to see him till the end of August, most likely, which is causing a lot of anxiety, naturally.

1. How likely is it that I will need a surgery within a year or so?
2. I know this topic has been discussed at length already, but which procedure/valve would be recommended for someone of my age, knowing that my priority is to be able to run and play tennis afterwards? I'm quite terrified of the ticking sound when it comes to the mechanical valve, and therefore was hoping that either Ross or Ozaki would be an option, perhaps?
3. I was told that in the meantime, I should not lift weights, but can still do some running at a relaxed pace and play some tennis (but not competitively). Statistically speaking, how high are the risks here?
4. Any tips or tricks in terms of dealing with the waiting and anticipation anxiety?

Thank you!
42195

I'm only just now reading the first page of this thread. Seems like a lot of good advice/discussion going on so far.

I just wanted to thank you for your post. Prior to this I had never heard of "dysautonomia" and had to look it up. Holy crap! This condition matches up with a lot of perplexing medical issues I've had over the years (especially chest pains, heart palpitations, getting extremely ill when exposed to hot/humid conditions in the summer causing numerous episodes of heat exhaustion and even heat stroke, digestive issues, I could go on). And I'm even in the category of genetic disposition for this based on my heritage. I've had numerous struggles with Drs who had no idea what they were doing (or didn't care) and since "normal" tests didn't reveal causes of my symptoms they simply wrote me off as "crazy".

One (a cardiologist) even told me to "go ask your bartender" when I asked if my heart was "OK" as he said then why did I keep having chest pains for no apparent reason?? Not to mention that it was shown in tests revealed to this Dr that I had two leaky heart valves, including aortic, where I was given zero guidance on what to do as far as keeping an eye in things as I got older and was not told my valve was bicuspid instead of tricuspid either (which culminated in needing AVR 20 years later when I almost died).

I realize there is nothing I can do at this point to get a diagnosis of this condition even if true while armed with the info I now have but I find it very interesting to finally get some clue as to what might be the cause of many of my problems all this time.


Oh & on the point of your saying you are "terrified of the ticking sound when it comes to the mechanical valve", DON'T BE.

Many of us have no problem with it. I can name three people I know who for instance cannot hear their mechanical aortic valve at all - me, myself, and I!

And I am someone very bothered by almost quiet noises. I had to move a clicking clock out of my bedroom because the tick tick ticking sound it made, even on a wall like 20 feet away, was driving me crazy (yet others can't even hear it). Heck this reminds me, I have a ceiling fan in the bedroom which is slightly off balance and occasionally makes a tick-tick sound if on its lowest setting - even quieter than the clock I mentioned - which also drives me crazy such that I can't use it on LOW (or I have to futz around with it to tilt it at just the right angle to get it to shutup if on LOW). But my On-x aortic valve? I've never heard it - and I was very thin after the surgery, dropped over 20 pounds down to like 120 pounds after my hospital stay, although the past 10 years I've gained all of that back and then some....

So I would not even let the possible noise issue be a consideration going forward. You might not even hear it. Or even if you can hear it most folks from what I've read up here either don't mind or get used to it. In the scheme of things it should be the last thing you worry about (or not at all).

Anyways, best of luck to you in your situation, I am now continuing to read the discussion here starting with page 2.

 

[slipkid]

I know that its only two members, but I'm going to say this isn't something you'll find among the bioprosthetic members ... at all

https://www.valvereplacement.org/threads/new-member.889635/post-934305



So that's more than 46 years. Like I say again, and again and again, and its in the Surgical Guidelines everwhere if you're under 60 its mechanical for the best chance to win.

Its why all mech valvers here give up posing their 'valvaversary' after the first couple of years and why bio valvers make a big deal about getting to 19 or 20 ... and it is a big deal because the statistics are more like 10 good years and maybe 15 before replaement.

So if you look at your age and combine it with the statistical average age of death for your nation; and its a life expetancy of over 30 years then you will only get that reliably with a mech valve. The literature is repeat with non-specific fear mongering of:

• life long anticoagulation
• the burden of INR testing

strangely don't mention the documented incompetency's of INR clinics and the bewildering "dipshttedness" of people who just don't want to comply and make zero effort. Perhaps this group are so large that surgeons are sick and tired of seeing their good work (which should last >30 years) ruined because some dope wouldn't take their pill or manage their INR or even get involved with managing their health.

Everyone with "the usual dilemma" needs to see and understand these simple well established facts. However looking at the obesity epidemic I can perhaps see evidence that a majority of the population can't manage their own health.

Know your self honesty and make your choice. Its my view that anxiety is a reflection of that you aren't listening to yourself some how

a worthy watch


Best Wishes to all with 'choice dilemma'

I didn't watch that video - and apologize for this sexist comment I will make mostly in jest - but that image suggests to me a 3 option choice of DESIRE on the left, a very attractive buxom young lady from the 1950's (judging by her hairdo) in the center, or IGNORANCE on the right. (What a bizarre image?).

Anyways,I for one choose the center option!