Hello, and a question, sort of.

[jyg]

Hello. I'm glad to have found you all. I've (mostly) enjoyed reading your posts (as some have scared the crap out of me) since I found out about this place after I learned of my need for AVR on Sept 9. My bicuspid aortic valve (fused leaflet) has been a known part of my physiology since I was born, just about 44 years ago. On Sept 6 I had a clot in my eye which has occluded the lower part of my right eye's vision. During the scans for signs of stroke, while my valve seemed to be still in the safe zone and the ascending aorta was at a still stable 4.05cm, a 5.3cm aneurysm was found where my aorta's ascending and arch portions meet, and also bit into my innominate artery. Surprise. Over the next 2 or 3 weeks, every time someone mentioned my kids I'd begin to cry.

At first all I could hear was, "You're going to die." I'm (mostly) over that now. The valve choosing process was also terribly stressful at first. I've gotten over it a lot, the stress of it all. And I'm ever slowly gravitating to what I feel will inevitably be the choice of the mechanical valve, but still haven't committed myself to it. My surgery is on Nov. 5, bright and early. After having now also read Irishgus' valve selection thread, there were some excellent posts that gave some of the best rubber-meets-the-road perspective I've heard or read yet. I'm particularly thinking of the early posts by "tom in MO" and "dick0236".

I really don't want warafin. Its not so much that I'm afriad of bleeding out after a car accident, or some other morbid and unlikely fear like that. It's more that I'm easily tyrannized by something like INR levels. I was known as the "Thermometer Nazi" because I would use 2 or 3 different thermometers when my children would get sick. I used to check the various levels in my saltwater aquarium like a mad scientist. Though, I got over it on both accounts. I hardly test my fish tank water any more (I promise not to get like that warafin ) I don't want to think about missing veggies as I love juicing with all that kale and spinach. I've slowly lost 10 lbs over the past year by making slow, minor changes to my diet with the help of juicing. I also love wine and cognac, and don't let me get started with Belgian ale. I generally have a glass of wine every night. But, it really sounds like that too, the diet stuff that is, is not as big of a life change as every pre-op youngster (such as myself) seems to fear.

So, that's where I'm at. I really long for that post-decision bliss and rest, but I'm not there yet.

By the way, its my hunch that in coming decades there will be better luck with finding superior anti-coagulants than there will be for surgeons figuring out safer, less invasive AVR procedures. Don't take my word for it... but my father was a podiatrist (the running joke in my family regarding my own medical knowledge) and I haven't slept at a Holiday Inn in years (the running intelligence joke on TV).

Oh yeah... that "Post Surgery" section's sticky, right at the top, "After your surgery, what are some of the things that you found out that surprised you", scared the crap out of me! All the crazy complications and discomforts and so on... my goodness. I hope I can forget every word of it! :redface2:

Thanks again, for all of you who have stuck around and continue to share your stories, experiences and wisdom. Its a real gift to us, not just to know there are those who've gone before but that there's a lot of us around... still alive.

Any feedback or questions are welcome.

jason

p.s. Read up on stroke rates and embolic debis events for TAVR and bring it up with your surgeon before you are convinced to go tissue... I've seen some disturbing statistics.

 

[Agian]

Hi Jason, you sound like me. Similar pathology, same anxious personality. I got the eye thingy as well for a few seconds. Did they find a cause for yours? Do you have a PFO?

Warfarin doesn't sound that bad.

btw they've got some protective filter gizmo they're going to use for TAVI, to prevent stroke.

 

[AZ Don]

Hi,
Are you a candidate for, and have you considered valve sparing surgery? It is my understanding that it is generally recommended for those with a well functioning BAV. My Cardiologist agreed, though my surgeon seemed to prefer mechanical. If I had any issues at all with my valve I would have replaced it, but since it was working so well I kept mine. The advantage is it is better than any replacement for now, the disadvantage is it may need to be replaced someday (surgeon estimated 50% chance).

I know how scary this issue is and how challenging the decisions can be. Just keep in mind that that these problems can be fixed with incredibly high success rates. Even the surgery isn't so bad. I had knee surgery that was much more painful.

 

[pellicle]

Hi there

My bicuspid aortic valve (fused leaflet) has been a known part of my physiology since I was born, just about 44 years ago.

there is a lot of us here like that. I was diagnosed early, but born at a time when such diagnosis was more 'patchy' than today. I've met beside me in hospital fellas who were builders and workers who got through till they had an 'event'.

a 5.3cm aneurysm was found where my aorta's ascending and arch portions meet, and also bit into my innominate artery.

actually I think this is a good thing. For if you get a mechanical, a major source of reoperation needs is to treat an aneurysm. If they put a graft on right from the start its more likely you'll get full life out of that operation.

At first all I could hear was, "You're going to die." I'm (mostly) over that now.

strangely I think there is value in that thought too. But only if it leads you to see that death comes for all of us. If from that point you see then that it is how you live your life that matters then you can be better off.

Did you ever read or read of bushido?

http://en.wikipedia.org/wiki/Bushido

Ignorance makes us think it is about war, but there are good teachings in that. It gags me to mention Tom Cruise but in "The Last Samurai there is a wonderful quote about living life in every breath" ... watch the movie, don't be afraid to cry.

and then I remember, like these blossoms we are all dying
do you know, life in every breath
every cup of tea..
.. that is bushido

but live life in every breath.
In my life before I met my wife, I lived in Japan for 3 years. I studied Aikido for some years before going to Japan and was interested in going there. And no, I did not go there as an "Engurishu Teecha" but as an Engineer. I was working towards attaining level 1 Japanese (official certification) when I "changed my mind" due to a case of cross fertilized eggs.

another movie worth watching is http://www.imdb.com/title/tt0165798/

And I'm ever slowly gravitating to what I feel will inevitably be the choice of the mechanical valve, but still haven't committed myself to it.

well if you've read that thread by Angus then my thoughts are well known to you. Did you also read the Mayo presentation? Would you like my notes on it (should that be helpful while watching and listening to it)?

I really don't want warafin. Its not so much that I'm afriad of bleeding out after a car

Its like this: I have a Pajero, bog standard 1989 4x4 ... a mate has a Landie Discovery with thousands poured into suspension and mods.

"HIS" car will go places mine can't. Yet in the real world driving that amounts to him getting perhaps 1Km further down the track before he too is walking due to impossible terrain.

my point is that in an event like a car accident warfarin or no warfarin is not going to be the deciding factor and the beesdick[sup]*[/sup] difference considering the forces involved won't change it much.

It's more that I'm easily tyrannized by something like INR levels. I was known as the "Thermometer Nazi" because I would use 2 or 3 different thermometers when my children would get sick.

In electronics (a far more measurable and accurate medium) as an Engineer I learned younger that this joke:

"Confucius say: man who has one meter knows the voltage, man who has two meters is uncertain"

has an amount of truth and wisdom in it.

Though, I got over it on both accounts.

well done, many don't (it should be clear by now that I'm treating this as a conversation and not pre-reading it ;-)

(I promise not to get like that warafin )

well post back here and someone will spank you for it I promise (but that probably won't be Protime who will somehow pick up on my mention of his name and remark about this ;-)

I don't want to think about missing veggies as I love juicing with all that kale and spinach.

don't ... just measure and work out if you need to alter your dose ... I eat spiniach in "horenso" a Japanese dish which I love.

I also love wine and cognac, and don't let me get started with Belgian ale.

I guess you noted that previous thread where we discussed alcohol. I guess that I'm among the more regular alcoholists here ... though compared to my Fellow Finns I'm in kiddie league, I've found zero evidence in my experience to suggest warfarin is interfered with by alcohol. Unless you get shitfaced and either forget to take it and or puke it up ... but that would be different.

I generally have a glass of wine every night.

me too ... if you're keen on the weight loss, try my method of removing alcohol. Every gram of alcohol is 1.6 grams of sugar in terms of calories.

But, it really sounds like that too, the diet stuff that is, is not as big of a life change as every pre-op youngster (such as myself) seems to fear.

think of it as a responce to questions which you don't yet know the answer. As dick mentioned, the people who have the most horror stories are typically those with little or no experience with it.

I currently amuse myself with this segment:
[ link ]

Thanks again, for all of you who have stuck around and continue to share your stories, experiences and wisdom.

people seldom appreciate my wisdom although they do occasionally deny my experiences ;-)

best wishes for November.

[sup]*[/sup] an ironic joke of mine is lost on many because mostly people don't know that the bees you see are female thus the length of a beesdick is not just small, its zero.

 

[pellicle]

ahh, one more thing. Something that has come up recently is this product:

http://www.gizmag.com/superglue-greatly-speeds-open-chest-surgery-recovery/16725/

which seems like it has a number of interesting advantages to wires. I would ask however long term how it goes in sternum healing. Does it impede bone knitting for instance? Not much glue lasts for decades.


as they Chinese say, we live in interesting times

 

[big_L]

Actually, I'd say you have one of the worst parts of the process behind you (or nearly so). That's the "I just found out and I'm scared s***less" stage. In a way, we work through the stages of grief when we find out we need surgery. I suppose the grief is for the life/lifestyle that we think we're losing.

I think you'll find that this is a bump in the road and that you'll come out just fine. Yes, it is a hell of a big bump and it's a very stressful time. It can put a tremendous strain on you and your family.

Your life is still there for you on the other side of surgery.

I won't lecture you on the warfarin. I haven't been on it long enough to truly comment. It's been covered many, many times - pro and con - on this board.

I couldn't read the post-surgery section a lot of days. My wife would say I was in denial. I would say that I don't want to read a bunch of 'bad' stuff that probably won't happen to me and will just cause more stress.

The TAVR is just too risky at this point and in the US is only done on those deemed too 'fragile' to have OHS. You're better off letting them get into you and getting the valve installed correctly. You don't want leaking or a re-operation.

 

[Agian]

Actually, I'd say you have one of the worst parts of the process behind you (or nearly so). That's the "I just found out and I'm scared s***less" stage. In a way, we work through the stages of grief when we find out we need surgery. I suppose the grief is for the life/lifestyle that we think we're losing.

Is the grief warranted? Do people 'lose' a lifestyle, when they go through this?

 

[epstns]

Jason - Welcome to your short stay in The Waiting Room, the virtual room where many folks await their own turns at valve surgery. You are learning many of the truths of the path. There are options, and the only one that is right for you is the one you choose. I was a bit older than you at my surgery date (I was 63), and after careful discernment, I chose a tissue valve. The statistics for valve longevity in "older" patients looked good enough for me. In your case, I would understand fully a leaning toward a mechanical valve. That said, warfarin comes to mind. I only needed to use it for the first 3 months post-op (my surgeon's standard protocol), but I never worried about what I ate. Also, my mother took warfarin for many years for afib (atrial fibrilation), and she didn't change her diet, either. The saying here is that we should "dose the diet, don't diet to the dose." If your diet is relatively consistent, your warfarin management team can adjust your dosage to keep your INR in the target range, no matter what you eat.

Regarding your age - in a way I wish I had been ready for surgery at your age. If the improvement to my life with surgery in my 60's is any indication, I could have really had a blast if I had gotten the same level of improvement in quality of life back in my 40's.

My standard advice to those in The Waiting Room is to make all of your decisions as soon as possible. Get the dates for everything (consultations, pre-op testing, surgery, etc.) set. Decide who does what (choose your cardio, surgeon, any other specialists you expect to need, get family and work support organized, etc.). Put your "plan" on paper. Then just work the plan. Don't worry about anything else. All the critical things are decided and you are ready to "just do it." For me, this reduced my anxiety level to near zero. In the weeks before my surgery, I found almost surreal calm and was ready for it when the time came. It also made it easier for me to deal with the speed bumps on the way to recovery. Oh, and keep in mind, most of the "major issues" we feel in recovery are really just bumps in the road. Some of us heal and recover at different rates, but almost everyone can eventually say that they feel better after surgery than before. For me, even with several complications, by the 6-month point I felt pretty good. At 1 year, I thought I was fully recovered. Then, at 2 years I looked back, and saw that I had come even farther than I had by the first year. I'm now working on the 3rd year, and things are still getting even better. Remember, your choice of surgery is a choice to live - and to live a life even better than the one you left behind.

 

[pellicle]

Is the grief warranted?

grief over loss is very much a person to person thing. I guess that I was suffering a little with my choices to embrace mechanical. It was rational, and it was never a question of "should I have gone the other way" but in hindsight I feel that some of my frustration soon after surgery was with learning to cope, overcoming the negative information (aka ********) I'd been given in impression.

I see people suffering grief over a lost pet or even a lost job.

I guess its all a matter of perspective and experience.

 

[Midpack]

If you are clearly symptomatic or sick (easily out of breath, very tired, etc.), the need of OHS is more naturally accepted.

The problem arises for those that are completely asymptomatic. You are told something like this:
"You must have OHS, because if you dont, you risk dying in the near future (aneurysm rupture, developement of irreversible cardiac failure, whatever). So you must have this MAJOR surgery, whose complete recovery will take several months, to feel, at the end of the road and with good luck, the same way you are feeling now". Of course, rationally, you know that you may feel the same way but with the big difference that something VERY important in your heart has been fixed. But anyway, it is a very hard pill to swallow. I beleive we all agree on this point. But when you have no choice, and surgery is a must (allways have, at LEAST, 2 different opinions on that), just go on and dont look back.

This site, full of people who have already undergone valve surgery (with excellent results), is a great relief against those negative thoughts that naturally come into our mind.

Hope you the best.

 

[Rachel]

I also remember thinking that I was going to die after I was first told that I had a “heart abnormality” – but in my case I really didn’t think too much about valve choice, I was more interested in getting my 5.2cm aortic aneurysm repaired – I also didn’t know about this forum until months after my surgery.

I’m personally glad that I knew very little information about OHS before going in…I think that reading about potential complications would have scared the crap out of me as well…. having said that – I’m also young with a tissue valve so guess what…. I get to do this again.

My decision for tissue was based on my surgeon’s recommendation – and I agreed to it knowing full well that another OHS is in my future. I have to also say that I’m not too excited about the TAVR option – I’d much rather they just open me up again.

For me, like others here – you make a decision based on what’s right and comfortable for you (and sometimes that means you go with your gut) – then you stick to it. I think that if you’ve accepted all the consequences of that decision it makes it very easy to not look back.


I feel the same way as Midpack here – when you’re asymptomatic OHS is a very hard pill to swallow

But I also remember looking forward to surgery – because that was the only thing that would save my life. This experience has taught me that there are no guarantees and that life is precious.

I‘ll be thinking of you on 11/5!!!

 

[Agian]

I guess that I was suffering a little with my choices to embrace mechanical. It was rational, and it was never a question of "should I have gone the other way" but in hindsight I feel that some of my frustration soon after surgery was with learning to cope, overcoming the negative information (aka ********) I'd been given in impression.

It sounds like a lot of your despair was based on (and I quote) "********" you'd heard about Warfarin.

 

[pellicle]

It sounds like a lot of your despair was based on (and I quote) "********" you'd heard about Warfarin.

well despair is a strong word, I suffering a little and that was just adding to my background issues.

To be specific I had no real knowledge of warfarin at that time. I had heard no horror stories. It was just the implications in which it was cast negatively by tone of voice.

I was probably most distressed (thinking about it) by the changes in life of needing to be on medication daily. Thats a milestone for someone who is fit and healthy. Then there was the blood testing, the clinic really never had me go more than 2 weeks without a blood draw and I had quite had a gutfull of blood samples. I cant alternate arms as only my left works (on account of a catheter insertion into my elbow and armpit "way back when" I had the first surgery in 1974. Lets just say Angiograms have come a long way since then.

Then there was the stresses (minor I admit) of "**** I left the warfarin at home" when we would go visit friends. Simply because it waa new to me. I would be stressed because 1) I had forgotten something important 2) I knew it would lead to my being out of range and them doing another blood suck 3) I was annoyed that my life had changed so as to need to put a drug as being #1 important.

Plus on top of that life was busy and confusing. At exactly the same time as my valve surgery Dad was in hospital getting fluid drained from his lungs and I wasn't sure what the problem was at that point. I soon found muself in and out of Oncology visits with dad. That turned into paliative care and radiation treatment. Then as soon as I was able (more or less) we were moving him into a nursing home. Then his partner died and I had to handle the funeral and estate. Then he died and there wasdifficulty there, then my wife died and that was so tough that all the rest seemed insignificant. Like mosquitos. Then there came the infection and debridement surgeries. By which time I was really well and truly used to any disruption in life.

It was after the first debridement surgery that I decided that enough was enough and took my leave of the clinic. So just over a year after starting on warfarin I took over management.

So no, I hadn't heard much ******** about warfarin, it was only after joining here and reading all the comments on how horrible it would be to have to be on warfarin that I was introduced to that...

 

[pellicle]

Hi

Is the grief warranted? Do people 'lose' a lifestyle, when they go through this?

I've thought about this a bit more ... my answer is yes. Even if the physical changes are quite minor, people do lose naivety. They are forced to confront in (perhaps relative) youth what could be thought of as "awareness of their own mortality".

This is something many do not like.

I have come to think of it as a possibility for wisdom. (assuming that people grasp that there is a difference between wisdom and knowledge)

 

[jyg]

Thanks for all the kind responses. I'll try to answer all the items ...

Again: I've been getting all sorts of imaging of my heart done for years and no one has ever mentioned PFO to me with regard to my own heart. But then, no one told me about even the possibility of aortic aneurysms either... My retinal clot was probably from dislodged calcification from the valve, or maybe a clot caused by the aneurysm.

AZ Don: My surgeon swears up and down that my valve is not reparable and will not last another 10 years. What's bugging me about that is I've been told for the past two decades, with my mild insufficiency, mild stenosis, mild everything, that my valve would probably be fine for life. Of course this was based upon all standard echos, etc. The surgeon got his perspective from reading CT results.

Pellicle: First, Dune is one of my favorite movies. BladeRunner too. Don't really know Bushido, (bolding intentional) but what I do know is that learning about my need for surgery and the initial fears were a real perspective changer for me. Many things that were so important quickly became very small and unimportant. Things that irritated me about my wife, my kids, my jobs, my friends, things that I've let form my outlook on life in so many negative ways, really stupid patterns in thinking and feeling that I've nursed like a drug addiction... I've been very much freed from that. This is the good part, the gift from God in all this. One fear I have now is that after surgery I'll become complacent and forget this wake-up call. Sometimes I wonder if going for the mechanical valve and the daily reminder of warafin will keep more than just my physical heart in check.

Midpack, et al: I am asymptomatic, however I have known about my valve deformity all my life. My surprise, as I mentioned earlier, was the aneurysm and that the valve was in worse shape than anyone had known despite all those echos. I'm quickly beginning to believe that standard analog echos are useless. I read a study that looked at aortic aneurysm patients whose AV issues were not discovered through standard echos, but only when high def digital echos were performed. Grr....

Rachel: Why did your surgeon recommend tissue? My surgeon got all excited about TAVR, but has been almost purposefully neutral in his description of valve options. It seems you are already wary of TAVR, so why opt for tissue? Was it a matter of age or to avoid warafin or ...?

 

[Rachel]

Thanks for all the kind responses. I'll try to answer all the items ...


Rachel: Why did your surgeon recommend tissue? My surgeon got all excited about TAVR, but has been almost purposefully neutral in his description of valve options. It seems you are already wary of TAVR, so why opt for tissue? Was it a matter of age or to avoid warafin or ...?

I think that he has full confidence in the performance of my tissue so that's what he recommended (and I'm not that young...48 - but that is young enough I suppose) - My surgeon is also all excited about TAVR - (I'm not a surgeon so I have no idea about anything related to the operation - I just figured that the OHS worked the first time....) I chose tissue because I didn't like the idea of potentially hearing the ticking all the time - or even at all. I have no idea if that would be true or not in my case - but I didn't want to find out if I didn't have to.

I know that some people will say: that is a stupid reason - but it's my "stupid" reason - I know myself and I know what I can live with and what would be difficult for me - evidently I can live with another surgery

On the flip side - if my tissue goes earlier than expected - of course I'll go mechanical - and thankfully we have that choice.

I'm pretty happy with my decision - I've accepted that I will need another surgery in the future and I don't take that lightly.

I also totally agree with you when you write about the "wake-up call" I've experienced that before and after surgery.

All the best to you - you'll do fine!

Rachel

 

[pellicle]

Hi

Pellicle: First, Dune is one of my favorite movies. BladeRunner too.

Bladerunner ... ahh ... easily in my top 3. I was already a big Vangelis fan when I saw the movie, and as I was at Uni doing Biochem with a mind to getting into genetics the movie just fell into so many facets of my "likes" and "interests"

... and the initial fears were a real perspective changer for me. Many things that were so important quickly became very small and unimportant. Things that irritated me about ....
I've been very much freed from that.

sounds like you have maxed out your learning potentials from this event. I'm glad to hear that it has been positive too.

Don't get the idea that I've got it all sorted out here at this side of the keyboard. I still do a lot of falling down with my own bundle of problems.

I write on my blog mainly to remind myself but also to help anyone else who happens to find it useful.

One fear I have now is that after surgery I'll become complacent and forget this wake-up call. Sometimes I wonder if going for the mechanical valve and the daily reminder of warfarin will keep more than just my physical heart in check.

I too see that as a danger for me in learning what I have been learning in this last nearly 2 years. I have found that (after the first year of being passive and not liking it) the small effort required in management of warfarin and management of my antibiotics (still dealing with that surgical infection) keeps me aware of the reality that my health is not a thing to take for granted but something which I need to play an active role in managing.

I see you have made many great strides in your journey from 'shock discovery' to now.

Best Wishes

 

[Agian]

Again: I've been getting all sorts of imaging of my heart done for years and no one has ever mentioned PFO to me with regard to my own heart. But then, no one told me about even the possibility of aortic aneurysms either... My retinal clot was probably from dislodged calcification from the valve, or maybe a clot caused by the aneurysm.

I'm no expert in this, but I found out a little about it, because it happened to me. PFO (Patent Foramen Ovale) is a common little defect that can be closed. Apparently, this is a common cause of TIA/Stroke in younger people. Retinal artery clots are rare in younger people, and tend to affect older folks with Carotid Artery Disease. I was told it was unlikely that my eye clot came from my valve, although this can't be ruled out. A calcium embolism would not 'dissolve' and might even be seen as a white fleck, when they look at your retina. If it's your valve and/or aneurysm that caused it, this will be fixed soon. During the procedure it would also be very easy to repair a PFO, at the same time. They usually repair these via a vein in the groin, anyway.

Did your visual field return?
Did they look at your carotid arteries? (I bet they did)
Did they put you on Aspirin and/or Plavix?
Ask about any PFO and whether it's worth repairing, if it's present.

I'm having a TEE on Thursday to look at my PFO.

 

[jyg]

Did your visual field return?
Did they look at your carotid arteries? (I bet they did)
Did they put you on Aspirin and/or Plavix?
Ask about any PFO and whether it's worth repairing, if it's present.

I'm having a TEE on Thursday to look at my PFO.

I lost most of the lower peripheral vision in my right eye and within the first few days it improved slightly, but not much. Initially the "veil" was black and solid. Within days it became gray and the edges became somewhat see through. I could swear it shrank a bit last week. If anything has gotten better, my brain has learned to compensate for it quite well. There are ways I can trick it -- sometimes I believe I can see the continuation of shapes, into the "veil", that otherwise are in my vision where I am able to see. But all I need to do is wave my hand infront of the "veil" and while my brain continues to fill in from what's actually visible and yet I am unable to see my hand. :biggrin2: Really, I can see just fine and its only occasionally a distraction or impairing. Right now, it's the least of my worries. And yes, its one major reason I want this calcified valve out of my body and haven't argued all that much about repairs or leaving it in with my surgeon.

Yes, they did include the carotid arteries with the echo and it was fine. The surgeon says, after looking at my scans, my arteries are quite clear.

They put me on 81mg aspirin (with a statin and some BP lowering meds)

When I was in the hospital I had a regular echo, a TEE, a CT and an MRI. The CT covered my heart, but not the MRI. Because my valve issue is congenital I've had many echos in my life, including a TEE a few years back. No one has every mentioned the PFO... doesn't mean it was looked for. After all, no one's noticed the balloon in my aortic arch till now :rolleyes2:

 

[Agian]

I'm glad you're taking Aspirin.

Ask about the PFO. It's so common, that they're unlikely to bring it up. It becomes an issue if someone has a TIA under 50.