It Just Got Real

[Seaton]

Well, it seems Thunderbirds are go.

Saw my surgeon today (4th April) at a pre-admission clinic and it’s been decided to go ahead with surgery. In approximately two months’ time - June most probably. I signed the consent form. Eek.

My Waiting Room days are nearly over - some four years or so since first diagnosis of bicuspid valve stenosis.

Although I’m not significantly symptomatic (fatigue mainly, stenosis edged into severe, pressure gradients up), he feels my readings are all going in one direction and that it is probably better to get the valve replaced sooner rather than later so I can get on with the recovery period and the “rest of my life”.

We discussed valve types (mechanical or tissue) but he said there was no rush to decide on preference. He said I can leave the decision up until the day of the operation if I prefer! They will just pull whatever valve type I choose off the shelf on the day.

He mentioned they now implant the Edwards Inspiris Resilia Valve which I would get if going tissue. Although it appears the Inspiris is still in the guinea pig era relatively (still no long term human use data it seems), I suddenly found myself seriously considering tissue as an option for the first time. This despite having thought I’d made up my mind to go mechanical. That sudden change of heart took me by surprise.

I don’t fear the idea of anti coagulants (thanks primarily to this forum), but now that I’ve reached the sublime age of 60, I found myself today thinking maybe tissue wouldn’t be such a critical choice for my age and circumstances (famous last words).

Whichever valve type is chosen, he intends to do a mini sternotomy procedure, unless other issues or complications suggest a full sternotomy.

So there we have it. There was me thinking I was popping in to have a chat with a surgeon about continuing to watch and wait, when a suggestion was proffered to operate.

Today I had eight vials of blood taken, MSRA swabs, EKG, X-Ray and a lengthy consultation with the lead nurse who will be my point of contact for the duration of the coming period and after. I am being booked for a coronary angiogram to check if any coronary arteries are blocked or narrowed. The surgeon checked a previous CT scan I had in 2015 and seemed to think from looking at that that my arteries looked pretty clear. We shall see.

 

[pellicle]

Well, it seems Thunderbirds are go.

congratulations ... I predict it will be in the rear view mirror in a far shorter time than the anxious times have already been ...

My Waiting Room days are nearly over - some four years or so since first diagnosis of bicuspid valve stenosis.

We discussed valve types (mechanical or tissue) but he said there was no rush to decide on preference. He said I can leave the decision up until the day of the operation if I prefer! They will just pull whatever valve type I choose off the shelf on the day.

you have plenty of data here, so just do what feels right for you mate.

He mentioned they now implant the Edwards Inspiris Resilia Valve which I would get if going tissue. Although it appears the Inspiris is still in the guinea pig era relatively (still no long term human use data it seems)

Myself I don't think its quite like that, as it is just an iterative change to existing techonlogy. I'd expect a modest increase on previous generations.

I don’t fear the idea of anti coagulants (thanks primarily to this forum), but now that I’ve reached the sublime age of 60, I found myself today thinking maybe tissue wouldn’t be such a critical choice for my age and circumstances (famous last words).

that is not an unreasonable conclusion to reach ...


Best wishes

 

[Paleowoman]

Hi Seaton,

Nearly the end of being in the "comfy chair in the Waiting Room" for you. But you have a couple of months to prepare for when you're up and out ! And it will be a nice time of year too - I always thought spring or early summer would be a good time to be recuperating from surgery, and pleasant to be out walking.

I was 60 when I had my surgery. You're lucky you have the chance to have the Edwards Inspiris Resilia valve if you choose to have a tissue vave. I was a few years too early to have that one - it was first used in the UK in June 2017 - but I personally would have gone with it, especially knowing they are using it in much younger patients.

It's natural that there's no long term track record for the Inspiris Resilia valve because how would they do that ? There's no long term track record for the previous Edawrds valve, the Magna Ease, which I have. I believe the name of the one prior to that one was the Edwards Magna valve - that one has a longer track record but no one is given it now because surgeons aways use the latest one developed.

You know we're all here cheering you on !

 

[LondonAndy]

It is interesting that you are considering both types of valve, Seaton, and I guess it depends on our own sensibilities and lifestyles. For me, the priority at age 48 was to reduce as much as possible the risk of having to have open heart surgery a second or third time. Even with the improvements to tissue valves that I have read on this forum it seems likely that a re-do would be required at 10 to 15 years, so in your case at age 70 to 75, though of course further improvements may be in place by then either for the valves or the method, or both.

And make sure you have a comfy chair for after surgery too! I am not sure how different a mini sternotomy is in terms of the precautions needed compared to a full one, but I found an electric recliner invaluable for getting into just the right position for sleeping when first out of hospital.

 

[tom in MO]

One thing to consider if you are 60 in the tissue vs. mechanical debate is your possible need to take NSAIDs for arthritis. You can't routinely take some of the common NSAIDs such as ipubrofen, meloxicam, etc. if you are on warfarin. However, my GP thinks that I can't take NSAIDs is kind of a good thing, because he doesn't like NSAIDs for a variety of reasons. I can take a 2-month course of an NSAID, which so far is good enough when an arthritic bone spur cuts off a nerve in the spine.

 

[Seaton]

Thanks everyone! Sound advice and kind words, as ever.

And make sure you have a comfy chair for after surgery too! I am not sure how different a mini sternotomy is in terms of the precautions needed compared to a full one, but I found an electric recliner invaluable for getting into just the right position for sleeping when first out of hospital.

And thank you @LondonAndy
Advice taken. Just ordered a new electric recliner. My new, all purpose comfy chair. I’ll never need to walk again.

 

[Gordo60]

I’m 59 and in the watchful waiting mode for a 4.8 cm root TAA. Go for my annual echo etc next month. One never knows if it will be time or not each checkup.

I’ve done quite a lot of research on mechanical vs tissue value for a few years now. When the time comes I’ve decided on the Edward Inspiris Resillia tissue valve. Around age 60 falls into that difficult grey area but it appears that more and more surgeons are favouring tissue valves for this age group given the advances in technology and operating procedures.

Even if the Edward Resillia valve falls well short of its expected life and only lasts 10 - 15 years that puts one around 70 - 75. Then due to its design a non invasive procedure can likely be used to insert another new valve if the need arises. In that age group there’s plenty of other medical issues / operations that could result in death unrelated to the valve issue.

I intend to keep myself as fit as possible as I age. If I need another operation in my 70’s then I hope to be in as good as health as I can be. Even if someone at 60 gets a mechanical valve there’s the possibility of an aneurysm arising later on requiring another surgery anyhow.

In summary when getting toward 75 there’s so many unknowns I’d rather get the new generation tissue valve at 60 and be free of the issues relating to warfarin. I know many here say it’s no big deal but I also know a number of people personally on it who don’t like it at all. So not an easy decision.

 

[DL1017]

Well, it seems Thunderbirds are go.

Saw my surgeon today (4th April) at a pre-admission clinic and it’s been decided to go ahead with surgery. In approximately two months’ time - June most probably. I signed the consent form. Eek.

My Waiting Room days are nearly over - some four years or so since first diagnosis of bicuspid valve stenosis.

Although I’m not significantly symptomatic (fatigue mainly, stenosis edged into severe, pressure gradients up), he feels my readings are all going in one direction and that it is probably better to get the valve replaced sooner rather than later so I can get on with the recovery period and the “rest of my life”.

We discussed valve types (mechanical or tissue) but he said there was no rush to decide on preference. He said I can leave the decision up until the day of the operation if I prefer! They will just pull whatever valve type I choose off the shelf on the day.

He mentioned they now implant the Edwards Inspiris Resilia Valve which I would get if going tissue. Although it appears the Inspiris is still in the guinea pig era relatively (still no long term human use data it seems), I suddenly found myself seriously considering tissue as an option for the first time. This despite having thought I’d made up my mind to go mechanical. That sudden change of heart took me by surprise.

I don’t fear the idea of anti coagulants (thanks primarily to this forum), but now that I’ve reached the sublime age of 60, I found myself today thinking maybe tissue wouldn’t be such a critical choice for my age and circumstances (famous last words).

Whichever valve type is chosen, he intends to do a mini sternotomy procedure, unless other issues or complications suggest a full sternotomy.

So there we have it. There was me thinking I was popping in to have a chat with a surgeon about continuing to watch and wait, when a suggestion was proffered to operate.

Today I had eight vials of blood taken, MSRA swabs, EKG, X-Ray and a lengthy consultation with the lead nurse who will be my point of contact for the duration of the coming period and after. I am being booked for a coronary angiogram to check if any coronary arteries are blocked or narrowed. The surgeon checked a previous CT scan I had in 2015 and seemed to think from looking at that that my arteries looked pretty clear. We shall see.

Hi, seems we both will be in surgery in June. I am new here, again. I was a member years ago when I had my BAV replaced in 2006, at 50 years old, with a porcine value and aortic wrap. Things went just swimmingly until a few months ago when I started having shortness of breath issues. It took me a little while to realize exactly what was going on. The symptoms have come on a lot stronger it seems...by the time I get to the top of a flight of stairs, I'm huffing and puffing! Now, I'm 62 and for some naive reason I thought I could get the TAVR approach. I could, if I wanted, but the surgeon doesn't recommend it. Apparently it doesn't last any longer and they can only do it once. Am I understanding this correctly? If I get the TAVR, it might last 12-15 years, I'll be in my mid 70's, and would have to have OHS because they couldn't do the TAVR again. It all seems to be a crap-shoot. Maybe I won't live to be 75, hopefully I will. So, my decision seems to be: another tissue value, or a mechanical value and coumadin (which the doc says has a good chance of lasting the rest of my life. But quickly reading some posts on here, it doesn't sound like that's a definite) Like a lot of people, I'm scared of coumadin. I've already had other medical issues: Breast cancer at age 35 with surgery & chemo; I was found be to type 2 diabetic at the same time I found out I needed my BAV replaced at age 50. I'm already sticking myself to test for my blood sugars, do I feel like doing that for blood thinning too?
I guess I'm not really asking a question, am I. Just wanted to say, I'm in the same boat as you, Seaton, or at least waiting like you. They scheduled me for 6/13 (with the same surgeon as first time around), but I have a 2nd opinion this Tuesday. If I didn't book it, I might have to wait till July because of his vacation.
I'll be curious to see what valve you choose. Right now, I'm leading towards a tissue one again.
Thanks for listening.

 

[Seaton]

Hello @DL1017

A big welcome back (albeit under trying circumstances)!
Hope all going good for you today.

And apologies for the slow reply.

It’s difficult, isn’t it, valve choice when at a certain age. And comorbidity consideration. Although having said that, I thought I was already decided in my head. That I’d go mechanical and take the life style change and (once-a-week) INR monitoring as part and parcel of the incredible luck of living in an era where our lives can be saved and extended by surgery and valve replacement. That we should have a choice of valve types and techniques seems even more fortunate, all things considered.

But then sitting with the surgeon and discussing valves I suddenly felt completely at ease with the idea of the new bovine Resilia Inspiris, once he mentioned the name. I’d perhaps been picking up all the discussion of the valve on this forum and various other places over the year or so, and unconsciously been considering it. Because as soon as he offered me the choice I thought, Aha! I think I might go for that. Which was a surprise (it was also a surprise that he was offering the Inspiris Valve. I hadn’t realised my hospital was offering that particular brand).

I’m still leaning strongly towards the Inspiris valve as I write this. I’m intending to contact the hospital sometime next week and tell them of my decision. Even so, it appears should I have a change of ‘heart’ (ha!) between now and surgery day, I can still opt for the mechanical. But as it stands (as of today, anyway) I feel the Inspiris bovine pericardium valve is my ‘considered’ choice.

Of course, it’s all a bit of a gamble. There are a lot of what ifs and maybes regarding duration and future techniques and possible complications and the effect on comorbidities with any valve type choice. All I can do is try and make an informed choice based on the evidence before me and my current psychological inclination. Considering my age, either choice wouldn’t necessarily be ‘wrong’.

TAVR/TAVI is still reserved for people who are considered at intermediate or high risk of complications from surgical aortic valve replacement. The Inspiris valve apparently has the ability to expand slightly to allow for better TAVR/TAVI placement at some future point should it be used. But putting another TAVR/TAVI valve inside an already implanted TAVR valve is not really an option, it appears. Complication risks would surely increase. As there are risks and limitations even with initial TAVR/TAVI it seems.

And it remains to be seen how long an implanted Inspiris will manage long term with it’s new “novel integrity preservation technology” which “incorporates two new proprietary features that, virtually eliminate free aldehydes while protecting and preserving the tissue”.

I may get a few years or less with the bovine Inspiris valve. Or I may get much much longer. Or some other serious comorbidity could arise and slip me quickly off this mortal coil before I have chance for a final double espresso and croissant (both my poisons of choice ). And should I get the suggested ‘25 years’ (I wish!) from the bovine, that would take me to 85 years of age. By then we may all be owners of flying cars and take holidays on the moon. Of course, I don’t hold my breath on those advances, but I imagine (and hope) new heart valve replacement techniques and technology will have been developed sufficiently by then to offer me opportunities for transition into an even older old age. I can but dream!

And I’m so very glad you survived the breast cancer that arose for you at such an early age ...

Wishing you the best for the days ahead @DL1017 and the decisions you make. I’ll be following your journey. Please let us know how it goes and what you decide.

 

[Bill B]

I was in an almost identical situation at 61 (10 years ago). After studying valve choices extensively, I went with mechanical despite a loathing of needle sticks (or finger pricks) I would face with lifelong warfarin and the potential for bleeds or strokes. I haven't kept up with recent developments. However, at the time and most likely now, there is no clear right or wrong choice. I thought it was incredible that nearly all surgeons leave the choice of which valve up to you, but that probably just reflects the lack of decisive information. After spending 6 months reading all the relevant primary medical literature, which in my career I had extensive experience evaluating, I decided that due to the absence of any significant co-morbidity, mechanical was a better choice for me and that none of the newer valves was likely significantly better than the tried and true one my surgeon favored. I basically decided to go with my surgeon's preferences even though he left the choice totally up to me. Had I gone to the Cleveland Clinic I know the preferences, and most likely my choice, would have been different. That's the state of the art.

Warfarin has been mostly just a minor inconvenience, although not TOTALLY complication-free for me. My INR has been in-range >80% of the time and very rarely more than just a smidge out of range, which my cardiologists think is great, but due to some communication mishaps, I had probably a month where I was way below target. In the middle of that month I had a strange but short and inconsequential episode of tingling goosebumps in my left forearm. A few months later I had a MRI of my head for an unrelated reason, and a TINY punctate lesion was noted in the sensory cortex of the right hemisphere. AHA! That tingling was the most minor of strokes. I don't mean this to scare you, but you need to not get too cavalier about warfarin, should you end up going mechanical by chance. I know that seems obvious, but...When I had a low INR result and the "warfarin nurse" seemed a bit to cavalier in her response, I should not have let this go. Generally, the monitoring and their recommendations have been spot on, but this time it wasn't and I had done so well for so long that I did not react properly. I have good doctors and nurses, but the health care system is a bit too rushed these days and lapses can occur. So, if you end up mechanical, you need to be vigilant. I do not carefully monitor my diet, other than to just not make large variations in dark leafy green consumption. I don't track it but I just keep a general awareness of consumption over time.

Anyway, it seems you have your situation well in hand. With a mini-sternotomy, your recovery should be easier than mine. My operation was complicated by an aortic arch aneurysm repair with some post-op complications. Still, I was totally pain-free post-op and out in a week. I felt like I had been run over by a truck for a month or so, but recovery was complete in a few months. I'm completely unrestricted in my activities and feel totally healthy again and expect to remain so far into the future.

Carry on!

 

[Seaton]

I was in an almost identical situation at 61 (10 years ago). After studying valve choices extensively, I went with mechanical despite a loathing of needle sticks (or finger pricks) I would face with lifelong warfarin and the potential for bleeds or strokes. I haven't kept up with recent developments. However, at the time and most likely now, there is no clear right or wrong choice. I thought it was incredible that nearly all surgeons leave the choice of which valve up to you, but that probably just reflects the lack of decisive information. After spending 6 months reading all the relevant primary medical literature, which in my career I had extensive experience evaluating, I decided that due to the absence of any significant co-morbidity, mechanical was a better choice for me and that none of the newer valves was likely significantly better than the tried and true one my surgeon favored. I basically decided to go with my surgeon's preferences even though he left the choice totally up to me. Had I gone to the Cleveland Clinic I know the preferences, and most likely my choice, would have been different. That's the state of the art.

Warfarin has been mostly just a minor inconvenience, although not TOTALLY complication-free for me. My INR has been in-range >80% of the time and very rarely more than just a smidge out of range, which my cardiologists think is great, but due to some communication mishaps, I had probably a month where I was way below target. In the middle of that month I had a strange but short and inconsequential episode of tingling goosebumps in my left forearm. A few months later I had a MRI of my head for an unrelated reason, and a TINY punctate lesion was noted in the sensory cortex of the right hemisphere. AHA! That tingling was the most minor of strokes. I don't mean this to scare you, but you need to not get too cavalier about warfarin, should you end up going mechanical by chance. I know that seems obvious, but...When I had a low INR result and the "warfarin nurse" seemed a bit to cavalier in her response, I should not have let this go. Generally, the monitoring and their recommendations have been spot on, but this time it wasn't and I had done so well for so long that I did not react properly. I have good doctors and nurses, but the health care system is a bit too rushed these days and lapses can occur. So, if you end up mechanical, you need to be vigilant. I do not carefully monitor my diet, other than to just not make large variations in dark leafy green consumption. I don't track it but I just keep a general awareness of consumption over time.

Anyway, it seems you have your situation well in hand. With a mini-sternotomy, your recovery should be easier than mine. My operation was complicated by an aortic arch aneurysm repair with some post-op complications. Still, I was totally pain-free post-op and out in a week. I felt like I had been run over by a truck for a month or so, but recovery was complete in a few months. I'm completely unrestricted in my activities and feel totally healthy again and expect to remain so far into the future.

Carry on!

Much appreciation for your great and considered response @Bill B Good food for thought, for sure.

 

[Suckyvalvegurl]

My surgeon at UTSW does a truly (no breast bone involvement) minimally invasive replacement procedure and he says 99% of people are a candidate for it. Let me know if you want his name. So much easier. I was back to work 1 week after surgery.

 

[Seaton]

That is amazing @Suckyvalvegurl. Your quick return to work! I find it hard to return to any sort of work after a week with a cold let alone heart surgery.

For the record, I’m in London and am British and therefore utilise our incredible but financially careful National Health Service – so I probably don’t qualify for the services of your remarkable surgeon in Texas, unless I go private and at great expense!

Aortic valve replacement through a right anterior thoracotomy wasn’t offered by my surgeon. He said he’d perform minimal invasive through mini-sternotomy.

My surgeon gives a talk on the subject here. The talk is from a conference in 2015 of the Annual Meeting of the Society for Cardiothoracic Surgery in Great Britain and Ireland. So fours years old now.

There was another view on Minimally Invasive AVR put forward from another surgeon, John Pepper, at the same conference given here.

My surgeon has also co-authored a paper on the subject of minimally invasive aortic valve replacement surgery and it’s outcomes.

In the conclusions of that paper they say: “It is impossible to tease out [from the data] any specific benefits of each type of incision or intercostal space entered apart from to say that the anterior right thoracotomy approach can perhaps be regarded as a super-specialist approach”.

But I suppose if you were recovered and strong enough to work a week after AVR, that could surely be considered an incredible benefit.

I spoke with my Lead Advanced Nurse Practioner for Cardiac Surgery today, who is my contact for the duration of my cardiac journey. She said if my planned Heart Catherisation showed any issues, then I would more than likely require a full sternotomy to deal with that and my AVR at the same time. I’m rather hoping the Heart Cath gives me a clean bill of health.

A big thanks for your comment and pointer.

 

[Gordo60]

I thought that in the case of Arnold Schwarzenegger‘s recent valve replacement (Mar 2018) they were intending to do the minimally invasive procedure but once on the table they weren’t able to so it ended up as OHS. You’d think he would have had the choice of the best surgeons out there?

It would be interesting to know what the reason was in that what sort of issues prevent the use of minimally invasive procedures.

 

[Zoltania]

I had minimally invasive surgery and needed a lot more time than a week to get back to work! Even minimally invasive operations involve using the bypass machine, cutting open and rearranging the heart, etc... my guess is that those things take as much of a toll on one's body and energy levels as a split sternum does. I was in excellent shape before the surgery and was shocked at how weak I was afterward, and for how long.

 

[Paleowoman]

My surgeon had planned to do a minimally invasive sternotomy, that is a mini sternotomy, but once she'd done that she found she couldn't access my aortic valve with that so had to go on to do a regular sternotomy. Doubtless something to do with anatomy which a surgeon cannot know in advance.

(I tried to quote, but failed, Gordo60's message above about Schwarzenegger‘s recent valve replacement (Mar 2018) when they were intending to do the minimally invasive procedure but once on the table they weren’t able to so it ended up as OHS. Gordo wrote it would be interesting to know what the reason was in that what sort of issues prevent the use of minimally invasive procedures.)

 

[Paleowoman]

My surgeon had planned to do a minimally invasive sternotomy, that is a mini sternotomy, but once she'd done that she found she couldn't access my aortic valve with that so had to go on to do a regular sternotomy. Doubtless something to do with anatomy which a surgeon cannot know in advance.

Trying again - Ah, Gordo has explained how to do this

I thought that in the case of Arnold Schwarzenegger‘s recent valve replacement (Mar 2018) they were intending to do the minimally invasive procedure but once on the table they weren’t able to so it ended up as OHS. You’d think he would have had the choice of the best surgeons out there?
It would be interesting to know what the reason was in that what sort of issues prevent the use of minimally invasive procedures.

 

[Seaton]

I thought that in the case of Arnold Schwarzenegger‘s recent valve replacement (Mar 2018) they were intending to do the minimally invasive procedure but once on the table they weren’t able to so it ended up as OHS. You’d think he would have had the choice of the best surgeons out there?

It would be interesting to know what the reason was in that what sort of issues prevent the use of minimally invasive procedures.

Amongst other possible issues, I suspect scar tissue would have been an issue with him @Gordo60 His previous op was the considerably complex Ross Procedure.

In 2018 the type of minimal invasive procedure they were going to attempt on him was through partial sternotomy and not anything like the anterior right thoracotomy approach that @Suckyvalvegurl had. His previous major surgery probably ruled out such an approach.

I imagine they perhaps thought they’d at least give mini sternotomy a try (at his suggestion?) but realised clearer, wider access was essential to limit risk once they could see inside the chest properly. Hence the switch to full sternotomy.

On the consent form I signed recently for valve replacement, the surgeon wrote Aortic Valve Replacement as a procedure. He didn’t include the type of access method he’d be using on the form. It was only verbally that he said he intended to do a mini sternotomy. This is perhaps to cover himself if, when he begins the incision, complications arise or particular morphology becomes apparent that suggests greater access will be required and the sternum then needs to be cut fully.

I suppose everyone going in for a Minimally Invasive procedure should be aware that they may wake post surgery with a full sternotomy. As happened to @Paleowoman above.

 

[Suckyvalvegurl]

I was blessed to have a surgeon that was in the top 3% of cardiac surgeons nationally. And an insurance company that approved seeing him. My issue was a bicuspid valve so i do not know if that made a difference or not. Interestingly, he does not use the robot at all. He feels he can do a better job on his own.

 

[DL1017]

Thank you Seaton for your detailed reply. It seems I'm not finished yet! I went for the 2nd opinion, and he agreed 100% with my first surgeon, but felt that I shouldn't wait till June, so he ordered a CT scan for the next day to see what's what. (the kind with the dye) CT scan wasn't fun...I'm a hard stick due to "chemo" veins, and the tech can only stick once...didn't work...had to come back 3 hours later. I spare you the details, except to say I was a wreck. Too far from work to go back, so hung out at my son's house with my awesome daughter-in-law while waiting. The nurse stuck me and got right in and it was great...no bruising either. The doctor called next morning and said "I think you're gonna be surprised at what I have to tell you, but I think you are a candidate for TAVR" What? He went on to explain and I was trying to write down notes, but of course, all I could focus on was no OHS. He said it had to do with stentless valve, my existing aortic wrap and the size of the valve. That's all I can remember. He was very positive that I'll be able to get this, and arranged an appt for me in Philadelphia at Penn Med's heart center. I'm about an hour south of there. I'm going Tuesday. This whole thing is a whirlwind to me. In the meantime, I feel like my breathing issue is getting worse by the day. The least little thing (taking clothes from the dryer and carrying a 5lb basket does me in!) Walking up the stairs in my house, and I have to sit down. He said this doctor is the best of the best for this. His name is Dr. Desai, if anyone has ever gone to him, I'd love to hear your experience.
So, I'm still in a holding pattern. What a pain.
Donna