Worsening bicuspid

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daVinci

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I discovered this site I'd estimate around 10 years ago and the wealth of information and support I've seen here over the years is phenomenal.

I recently experienced an accident at work which caused some trouble with my heart and came back here to see if someone had had a similar experience. I realised it's about time I join, especially as an operation may not be a long way off!

I was born with a bicuspid valve and stenosis, which has been monitored since birth.

I'm 26 and have moderate aortic stenosis, moderate aortic regurgitation and a dilated ascending aorta, as it stands from my echo 18 months ago, so awaiting aortic valve replacement at some point in the future. Echo June 2018: AVA 1.1cm², mean velocity 24mmHg, peak gradient 57mmHg, peak velocity 3.8cm/s.

I would love to hear any stories of those of you with mixed valve disease and your experiences and hopefully share more of mine for others to learn from.
 
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pellicle

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Hi and welcome in from the shadows.

My story is found littered around here, but perhaps this segment that is on my blog is useful:
the heart of the matter

I wrote this some years back the date is in the URL and as you're waiting you may find it helpful to refer to it now and then.


Especially because you're young (and really, do be aware of what relative terms mean to different paper authors and doctors) much of what you read will be aimed at people you'd call old (cos I did at 28 too).



I managed between my second surgery at 28 and my third (48) to live in 4 different countries and do things I never dreamed I'd do, such as teach my visiting Australian mates how to XC Ski
(bush skiing off track, not track skiing) and generally enjoy myself immensely. My wife noticed Ant was less interested in the skiing and more in the rocks and ice ;-)

Since my 3rd OHS I've continued to keep myself fit and keep on keeping on.
 

daVinci

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Thanks for sharing your story, interesting read and research analysis, I'm 100% going for a tissue replacement/homograft first time round too. Hopeful I can get as long out of it as you did yours.

Also a keen traveller and rock climber. Private health insurance is a worry though, so used to being looked after by the NHS, whole different ballgame.

Never quite braved the slopes before though! Would've thought it too risky on warfarin. Impressive.
 

pellicle

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Hi

Hopeful I can get as long out of it as you did yours.
my second was a homograft, living human tissue from someone who didn't need it anymore. They have a good history but are VERY dependent on who the surgeon is ... I knew nothing of this when I got it.
Never quite braved the slopes before though! Would've thought it too risky on warfarin.
you may have misunderstood what you were looking at, that's Cross Country Skiing (XC) and it was pretty flat and I was running ... I don't do down hill on things with no brakes:


as far as "worried about warfarin" I still ride my motorcycle (as well as the electric scooter above). There's an amount of over-caution and misinformation surrounding warfarin.

No matter what, keep your eye on your anxiety levels and consider reading some of the stoics.

887296


Best Wishes
 

daVinci

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Hi daVinci - welcome to the forum from another English forum member !
Hi Anne! Can I ask what London hospital you're under? I'm also seen in London. So grateful to have grown up with the NHS.

my second was a homograft, living human tissue from someone who didn't need it anymore. They have a good history but are VERY dependent on who the surgeon is ... I knew nothing of this when I got it.

you may have misunderstood what you were looking at, that's Cross Country Skiing (XC) and it was pretty flat and I was running ... I don't do down hill on things with no brakes:


as far as "worried about warfarin" I still ride my motorcycle (as well as the electric scooter above). There's an amount of over-caution and misinformation surrounding warfarin.
In terms of the homograft, from the research I've read I'd second you on the history front. Where did you find the information about the surgeon dependency? I'm sure every operation has an element of this, but would like to read some papers if it's extreme. I'm very attracted by the possibility of it lasting longer than an animal valve, especially as humans we tend to hang about for much longer!

I think I did, when I think of skiing, I think it must always include steep slopes! Cross country skiing must be a good workout, maybe I'll be able to try it in Norway this year.

On the warfarin front, it's the additional years I'd be spending it taking it that would concern me, essentially doing double time with twice as long for my clumsy and adventurous self- happy to start taking it a bit later on in life however. As a young female as well I'm keen to avoid warfarin if possible and cardiologists are the ones that push this to be honest. They've not even recommended a mechanical. I'm actually quite pleased about this as it makes the decision making process easier for me and I (hopefully) will be spared the hair thinning effects of warfarin whilst young, which I've seen happen to a lot of people. A bit shallow I know, but I'd rather it happened naturally first.

It's so reassuring to see people like yourself though, still getting to do fun activities and live life.

Thanks for the stoicism tip. From a first read it has a lot in common with the tenets of buddhism. My generation could learn a lot from appropriating this kind of thing.
 

Protimenow

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As a female (you, not me), if you're considering having a baby, doctors often (usually) recommend against a mechanical because of the need for warfarin. I won't repeat what you already know about pregnancy and warfarin, or about the probable need for some kind of valve repair or replacement some time down the road.

I'm not sure if warfarin has actually been associated with hair loss. I didn't experience it when I started taking warfarin 28 years ago, and I haven't seen any (many?) complaints hair loss in my many years on this site.

Whatever you, your family, or your physicians decide, I wish you the best. (And I WISH we had an NDA-like system here in the U.S.)
 

pellicle

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Hi
In terms of the homograft, from the research I've read I'd second you on the history front. Where did you find the information about the surgeon dependency?
like much that you read over time you don't see it written in bullet points, you learn about it and infer. So looking at the facts:
  • like Ross procedure surgeons specialise in it
  • like Ross procedure it has mixed outcomes (which may quite well be related to the surgeons skill and experienc
  • when you look at the morphology of the valve leafelets they are simply one of the most amazing piece of equipment in the human body, they are sensitive to an extent that handling requires a level of precision usually associated with NASA. Both at extraction, and in implantation. Cryogenic storage and limited shelf life are also key issue in success (I had to wait for a donor) Something to read here if you're interested in tissue morphology http://circres.ahajournals.org/content/113/2/186
Tissue bioprosthetic valves will degrade over time, its a known factor and the only ones selling up increased durability are the makers and the elderly; Aortic Bioprosthetic Valve Durability: Incidence, Mechanisms, Predictors, and Management of Surgical and Transcatheter Valve Degeneration

I think I did, when I think of skiing, I think it must always include steep slopes! Cross country skiing must be a good workout, maybe I'll be able to try it in Norway this year.
it was pretty obvious based on what you said ;-) (in fact I assumed it meant you didn't watch it) ... I'm sure you'll enjoy Norway, that video was shot in Eastern Finland where I've spent some time, and where my lovely wife was from (indeed she got me into skiing and introduced me to the beauty of the north.

887297


firstly you go on to mention the single most significant reason to avoid going a mechanical (almost as an aside) : you are a younger female who may wish to choose to have children.

Every other thing you mention is either the typical unsubstantiated fear mongering or insignificant in reality ...

On the warfarin front, it's the additional years I'd be spending it taking it that would concern me
Given that well managed INR will sit you in pretty much the "age related risk group" for either bleeds or thrombosis events (which is amazing since you will have a thrombosis generating device inside you) is pretty good. Further this is about the longest historied prescription drug which has been actively and intensively studied with the express purpose of finding a fault in it (not least by the drug companies who seek to spend millions to replace it so that they can make millions more), and what have they discovered? Almost nothing.


happy to start taking it a bit later on in life however.
That's the spirit, and given you are a bicuspid patient (are you? or was that a mistake based on the thread title?) another significant issue for you (driving reoperation) is eventual aortic aneurysm (which hopefully if your Cardio has not mentioned you will discuss this with them).

My third operation was essentially driven by the discovery of a rather well developed aneurysm, and while my homograft valve was worsening it was not at the point that everyone would agree that it needed replacement surgery yet. The aneurysm on the other hand was a "we need to do this as an urgent priority"


As a young female as well I'm keen to avoid warfarin if possible and cardiologists are the ones that push this to be honest. They've not even recommended a mechanical.
I suspect mainly because of the following:
  • warfarin is good ONLY if its taken strictly and testing is strict - young patients are about #2 in the list of "non compliance" patients (as they call it) with dementure patients being #1
  • as mentioned you're a young female who may later wish to have children
  • the general trend it so move towards tissue prosthesis now, which I can only assume is based on the factors of; we think you'll be non-compliant and come to harm; we assume its likely you'll need an additional surgery, so why shoot for a permanent solution; we can't think outside out view of you're older (and forget we're looking at a younger patient.
I'm actually quite pleased about this as it makes the decision making process easier for me and I (hopefully) will be spared the hair thinning effects of warfarin whilst young, which I've seen happen to a lot of people. A bit shallow I know, but I'd rather it happened naturally first.

It's so reassuring to see people like yourself though, still getting to do fun activities and live life.

Thanks for the stoicism tip. From a first read it has a lot in common with the tenets of buddhism.
you're welcome.

I once heard it phrased that given time all religions arise to promulgate similar ideas, because they are driven by the desires that are common to humans, science however will always discover and teach the same things (in an iteratively corrective manner) because it studies the same thing - the physical nature of the universe and its laws (even quantum mechanics). So while religious teaching may look similar, given time any creatures which may arise after humanity is gone using Science will discover the atoms, discover physics and chemistry in the same ways and those writings will be virtually identical eventually even the maths.

Best Wishes
 
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daVinci

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Joined
Jan 23, 2020
Messages
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Location
England, UK
As a female (you, not me), if you're considering having a baby, doctors often (usually) recommend against a mechanical because of the need for warfarin. I won't repeat what you already know about pregnancy and warfarin, or about the probable need for some kind of valve repair or replacement some time down the road.

I'm not sure if warfarin has actually been associated with hair loss. I didn't experience it when I started taking warfarin 28 years ago, and I haven't seen any (many?) complaints hair loss in my many years on this site.

Whatever you, your family, or your physicians decide, I wish you the best. (And I WISH we had an NDA-like system here in the U.S.)
Yes, I would prefer to be a man in this situation to be honest and would otherwise opt straight for a mechanical to be done with it and not have the certainty of the valve failing after some years. But it is what it is, I feel very fortunate otherwise. My understanding was that both warfarin and the heparins cause telogen effluvium in some people. I've experienced this before any time I have received heparins, possibly coincidental though and other factors can always be involved.

Many thanks for your reply and I just hope my upcoming echo doesn't preclude spatchcock time, haha.

Hi


like much that you read over time you don't see it written in bullet points, you learn about it and infer. So looking at the facts:
  • like Ross procedure surgeons specialise in it
  • like Ross procedure it has mixed outcomes (which may quite well be related to the surgeons skill and experienc
  • when you look at the morphology of the valve leafelets they are simply one of the most amazing piece of equipment in the human body, they are sensitive to an extent that handling requires a level of precision usually associated with NASA. Both at extraction, and in implantation. Cryogenic storage and limited shelf life are also key issue in success (I had to wait for a donor) Something to read here if you're interested in tissue morphology http://circres.ahajournals.org/content/113/2/186
you're welcome.

I once heard it phrased that given time all religions arise to promulgate similar ideas, because they are driven by the desires that are common to humans, science however will always discover and teach the same things (in an iteratively corrective manner) because it studies the same thing - the physical nature of the universe and its laws (even quantum mechanics). So while religious teaching may look similar, given time any creatures which may arise after humanity is gone using Science will discover the atoms, discover physics and chemistry in the same ways and those writings will be virtually identical eventually even the maths.

Best Wishes
The hospital I attend has a store and is a main centre in the UK for homograft valves and clinical trials concerning them- here's hoping they're experts at implanting them for real.

Thank you for the morphology article, it was actually the work of Leonardo da Vinci and his anatomical drawings, including bicuspid aortic valves, that inspired my username here.

887299


I can attest I watched the video, it looked a lot of fun!

The photograph is truly beautiful, I love that nature is still sprouting despite the snow, a lot of analogy to life in general.

I certainly am a bicuspid, partial fusion of the right and left coronary cusps and developing and aneurysm already. It is however, only dilated at the moment, so I'm hoping I could get it replaced once my tissue valve fails (second and hopefully last time around). It could be that I follow a similar path as you've described for yourself! Especially with the 1-4 year initial replacement prediction.

Your final thoughts there are very insightful. I'm sure these creatures, like Leonardo, would also discover the engineering superiority of the tricuspid valve! I always found it interesting that music can be considered very mathematical, nature and good music arrive out of mathematical harmony.

May I ask where you heard the last paragraph you mention? Always keen for something new to read.
 

pellicle

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Hi
The hospital I attend has a store and is a main centre in the UK for homograft valves and clinical trials concerning them- here's hoping they're experts at implanting them for real.
I'm sure there will be, just ask if they're cryopreserved ones (which in the modern era I would expect they are)

If you're interested I can with a link of some files which are .mht from readings I did some years back on my surgeon and my cohort ... stuff like this:


The Prince Charles Hospital and the St Andrew's Hospital, Brisbane, Queensland, Australia.

BACKGROUND AND AIM OF THE STUDY: The study aim was to elucidate the advantages and limitations of the homograft aortic valve for aortic valve replacement over a 29-year period. METHODS: Between December 1969 and December 1998, 1,022 patients (males 65%; median age 49 years; range: 1-80 years) received either a subcoronary (n = 635), an intraluminal cylinder (n = 35), or a full root replacement (n = 352). There was a unique result of a 99.3% complete follow up at the end of this 29-year experience. Between 1969 and 1975, homografts were antibiotic-sterilized and 4 degrees C stored (124 grafts); thereafter, all homografts were cryopreserved under a rigid protocol with only minor variations over the subsequent 23 years. Concomitant surgery (25%) was primarily coronary artery bypass grafting (CABG; n = 110) and mitral valve surgery (n = 55). The most common risk factor was acute (active) endocarditis (n = 92; 9%), and patients were in NYHA class II (n = 515), III (n = 256), IV (n = 112) or V (n = 7). RESULTS: The 30-day/hospital mortality was 3% overall, falling to 1.13 +/- 1.0% for the 352 homograft root replacements. Actuarial late survival at 25 years of the total cohort was 19 +/- 7%. Early endocarditis occurred in two of the 1,022 patient cohort, and freedom from late infection (34 patients) actuarially at 20 years was 89%. One-third of these patients were medically cured of their endocarditis. Preservation methods (4 degrees C or cryopreservation) and implantation techniques displayed no difference in the overall actuarial 20-year incidence of late survival endocarditis, thromboembolism or structural degeneration requiring operation. Thromboembolism occurred in 55 patients (35 permanent, 20 transient) with an actuarial 15-year freedom in the 861 patients having aortic valve replacement +/- CABG surgery of 92% and in the 105 patients having additional mitral valve surgery of 75% (p = 0.000). Freedom from reoperation from all causes was 50% at 20 years and was independent of valve preservation. Freedom from reoperation for structural deterioration was very patient age-dependent. For all cryopreserved valves, at 15 years, the freedom was 47% (0-20-year-old patients at operation), 85% (21-40 years), 81% (41-60 years) and 94% (>60 years). Root replacement versus subcoronary implantation reduced the technical causes for reoperation and re-replacement (p = 0.0098). CONCLUSION: This largest, longest and most complete follow up demonstrates the excellent advantages of the homograft aortic valve for the treatment of acute endocarditis and for use in the 20+ year-old patient. However, young patients (< or = 20 years) experienced only a 47% freedom from reoperation from structural degeneration at 10 years such that alternative valve devices are indicated in this age group. The overall position of the homograft in relationship to other devices is presented.


A subsection of that (nicely formatted) is this:

Freedom from reoperation from all causes was 50% at 20 years and was independent of valve preservation. Freedom from reoperation for structural deterioration was very patient age-dependent.
For all cryopreserved valves, at 15 years, the freedom was
* 47% (0-20-year-old patients at operation),
* 85% (21-40 years),
* 81% (41-60 years) and
* 94% (>60 years).

I think you're in the 21-40 group, so that's about the best group to be in (and was where I was when I got my homograft at 28 :)

I can attest I watched the video, it looked a lot of fun!
:)


The photograph is truly beautiful, I love that nature is still sprouting despite the snow, a lot of analogy to life in general.
thanks, its one of my "preoccupations"

I certainly am a bicuspid, partial fusion of the right and left coronary cusps and developing and aneurysm already. It is however, only dilated at the moment, so I'm hoping I could get it replaced once my tissue valve fails (second and hopefully last time around).
if you end up with a homograft that will of course make reoperation by TAVR type stuff much much simpler than with a bioprosthesis (as far as I understand, perhaps @nobog could comment).

...I always found it interesting that music can be considered very mathematical, nature and good music arrive out of mathematical harmony.
Music is of course well expressed in maths ... (even if the emotions it brings aren't)

May I ask where you heard the last paragraph you mention? Always keen for something new to read.
I believe its from Richard Feynman, but it could be by Carl Sagan ... I'll see if I can narrow it.

Let me know if you want the abstracts to those Allograft papers, I have them as .mht file so you'll need to manually open them (double clicking often fails) by dragging them onto a browser directly.

Best Wishes
 

nobog

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if you end up with a homograft that will of course make reoperation by TAVR type stuff much much simpler than with a bioprosthesis (as far as I understand, perhaps @nobog could comment).

The actual "operation" would be the same, it just when you do valve-in-valve you lose some EOA (effective orifice area). As always, if whatever valve is in there, if its to calcified, the TAVI would be a no-go.
 

daVinci

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One of two great scientists either way, Carl Sagan was a hero, might have to give Cosmos a re-watch.

Quick Google tells me they have a cryopreserved store.

If you could link them that'd be much appreciated, my next appointment is soon, so would be good to appraise a selection.

if you end up with a homograft that will of course make reoperation by TAVR type stuff much much simpler than with a bioprosthesis (as far as I understand, perhaps @nobog could comment).

The actual "operation" would be the same, it just when you do valve-in-valve you lose some EOA (effective orifice area). As always, if whatever valve is in there, if its to calcified, the TAVI would be a no-go.
Thanks for the info nobog. As I don't have the biggest aortic annulus and am quite tall I need all the EOA I can get. Don't think TAVR will ever be for me at a guess.
 

pellicle

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The actual "operation" would be the same, it just when you do valve-in-valve you lose some EOA (effective orifice area).
Indeed, but I was sort of thinking of what you had mentioned earlier about various issues with valve in valve on a bio-prosthetic which will have a stitching ring around it that limits the size of the orifice perhaps more than the native valve.
... As always, if whatever valve is in there, if its to calcified, the TAVI would be a no-go.
Good point.
 
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Paleowoman

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Hi Anne! Can I ask what London hospital you're under? I'm also seen in London. So grateful to have grown up with the NHS.
Hi @daVinci - sorry I missed how quickly this thread was developing - I had my surgery under one of the St George's cardiac surgeons, though at St Anthony's (I get Bupa via my dh's work), but, because the valve I got is too small - the EOA is smaller than my bicuspid one was before surgery - I saw a different cardiac surgeon at the Royal Brompton and then another one from Bart's who is the one I'm under now as being monitored.
 

Protimenow

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DaVinci - Sergei Prokofiev was a Russian composer who lived during the Stalinist years. He composed for ballets, symphonies and other music, and even did the score of a Movie (Lt. Kije, or Kitje, or whatever anglicization of the Russian language they use). If you get a chance, check out some of his compositions.
 

daVinci

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Thanks pellicle.

Hi @daVinci - sorry I missed how quickly this thread was developing - I had my surgery under one of the St George's cardiac surgeons, though at St Anthony's (I get Bupa via my dh's work), but, because the valve I got is too small - the EOA is smaller than my bicuspid one was before surgery - I saw a different cardiac surgeon at the Royal Brompton and then another one from Bart's who is the one I'm under now as being monitored.
Ah oh nice, I hope the hospital food was better with Bupa! Brompton patient currently myself.
DaVinci - Sergei Prokofiev was a Russian composer who lived during the Stalinist years. He composed for ballets, symphonies and other music, and even did the score of a Movie (Lt. Kije, or Kitje, or whatever anglicization of the Russian language they use). If you get a chance, check out some of his compositions.
Having a late-night listen now :)
 

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