Questions I asked my surgeon today

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markp66

Well-known member
Joined
Jul 18, 2011
Messages
177
Location
uk
A few answers from my surgeon in response to my many questions. Please speak to your cardiologist/ surgeon before taking any of these points on board.

Tissue or mech valve?
As your tissue valve failed in the first 4 years the only sensible option is a mech valve. This should last the rest of your life...

What about catheter AVR? If I get another tissue valve the next could be done via catheter
Although promising, especially for older patients there is absolutely no point in gambling with technology as tissue valves do not have an exact lifespan and differ from each individual. People have done this in the past (even in the late 90s) and the gamble hasn't paid off. Mech valves have great results overall.

What type of mechanical valve-
All new mech valves do a great job and are almost identical, some clearly have better marketing campaigns than others.. However, all surgeons have their preference and it would be unwise to get a surgeon to use a valve that he hasn't used before (although most surgeons could fit any valve).

How long do mech valves last?
200+ years

What is my life expectancy after op?
In theory back to normal life expectancy once successfully replaced with possibility of another op down the road (leaking around stitches etc) although this would be rare. All mech valves used today will last 200+ years. A reop would not be much risker than this op especially in 20 years time.

Clicking noise
Different for each person. Yes you may be able to hear your valve although this may get quieter with time. Try not to worry about it, if anything it gives reassurance that all is working.

Seriously?!
Yes, there is no reason why not, especially if there is minimum damage to your heart.
There can be complications after any surgery (as with any surgery) but if all goes as planned you should go back to a normal life and live until you are very old. However, patients with any AVR need to take much more care of infections which can cause valve damage leading to another replacement. Seeing a dentist least least very 9 months in essential.

But what about various internet stats about life expectancy after valve ops?
Dont look at these sites. Completely false numbers especially for todays standards. Based on very small number of patients from many years ago, most of whom who are over 65. Surgical technique has also greatly improved over the last few decades. Remember that Valve surgery has only been around for the last 50+ years so there is minimum evidence in any study.

Risk of death during op
For a 27 year old who is healthy/ fit- 2-4%+/-

Why would I potentially need my aorta replaced as well as the valve-
So we can put a larger valve in which gives better results.

What about warfarin?
Not a huge problem if monitored correctly. Easier than you would believe after reading articles on the internet. Many, many people have no problem with warfarin. Younger children and older patients find it hard to find their suitable INR at first. Risk of stroke/ bleed much lower with home monitoring. Clearly warfarin isn't ideal but at the end of the day it is preventing stroke risk. Without it would be catastrophic. Manage warfarin correctly and limit all the noted problems.

Do certain valves need less warfarin?
No. All latest generation of bi leaflet valves, including on x valves should be within standard INR range for bi leaflet mech valves. Lot's of ongoing research still needed. Tissue valves on the other hand rarely need Warfarin (it does happen however...)

How do I obtain a home monitor kit?
Either buy one or wait and receive through the NHS (around 4-6 months)

Diet restrictions with Warfarin?
If you keep your diet consistent it doesn't really matter what you eat as long as vitamin k foods are kept to a moderate level. By no means stop eating anything and everything with vitamin k! Check the list of foods/ supplements that are unsafe.

Alcohol with warfarin
No more than 2-3 units of alcohol per day. If anything keep consistent on a weekly basis. consistency is key. By no means do you have to give alcohol up.

Preparing for your op
See your dentist first and foremost. If you need any teeth removing etc get this done asap as we can't operate for 6 weeks post dental work. It is still good practice to take antibiotics after any dental procedure even though recommendations have been slightly changed in recent years. Keep fit, eat well and be positive. Keep very fit and mentally positive.

Recovery time?
Up to 2 weeks in hospital post surgery (normally less), 3 months on average for the sternum to fully heal. Therefore no heavy lifting in this period.

When can I travel after the op? Travel insurance.
Try and wait at least 6 months before getting on a plane. Travel insurance will be harder/ much more expensive after any OHS. However, it is available. INR levels need to be monitored before you go away. A good idea to bring home testing kit with you. Drinking whilst flying isn't a good idea as cabin pressures alter effect of alcohol on warfarin. Heat can also impact on the effect of warfarin.

When do I need my surgery
Don't hang around too long. Waiting will only damage the heart which could be irreversible. Once diagnosed with severe valve stenosis there is absolutely no point waiting even in asymptomatic patients.

Anything else?
Stop worrying and reading false articles on the web. It will only make things worse. Try to relax and don't worry about things you have no control of. Leave that to us!
 
Thanks for the post Mark! Very informative. I personally would not take a risk on doing a tissue unless I was over 50 years even with the hope of TAVI in the near future.
 
It sounds like you had a good talk with him. Have you asked about your old valve and if they plan on sending it out to see why it failed so soon? I think you have a Mosaic, but might be wrong.
 
Hi Mark,

This pretty much sums up verbatim what I heard from my cardiologists and surgeon.

I personally can attest to the technology gamble in late 90s. I did research on mechanical vs. tissue valve back in 1999 when I came to know about AVR as a one of the recommended option for my AR. I have been told by numerous people that technology will improve, catheter based tissue valve replacement would be a reality very soon and hence go with tissue valve. Fast forward 12 years, I am kinda puzzled to hear the same story again.

I am still a believer and I hope that the breakthrough happen soon and our tribe benefits tremendously from those advancements. I would have preferred a tissue valve if I am 50+ , but not at this age (I am 36).

-Kumar
 
It sounds like you had a good talk with him. Have you asked about your old valve and if they plan on sending it out to see why it failed so soon? I think you have a Mosaic, but might be wrong.

Hi Lyn, he said it's probably because I was so young and he wasn't at all surprised it had deteriorated so quick? Probably nothing to do with the valve itself, more my body destroying it! I'm not sure if they are sending it out but I would love to know. Anyway, I enjoyed an extra 4 years of no limitations on what I can do although he said a mech valve shouldn't really change anything, I also asked him about the Ross procedure. From his experience he said that bicuspid aortic valves have much less success with the Ross procedure because of sizing issues. I didn't ask him to go into more detail about this. However, he said the Ross was great for children as the valve generally grows with the patient.

So mechanical was my only option really. He said mechanical valve + dracon graft could see me up until 90 although this was unlikely as life expectancy of men is around 77! However, he did warn me about infections etc and Pannus growth (which is is Very uncommon...). He also pointed out that it was hard to give a definite answer because nobody has actually had a valve in that long due to everything being so new. He could give me a more accurate answer in 50 years I guess!
 
Mark
I like your surgeon! You're in good hands. Have you considered home monitoring? It's the best tool you can have.
This should be a "sticky".
 
Great feedback:thumbup:,,,,,, just shocked you got this many words out of a surgeon; sounds like a great doc

I don't see having the mechanical valve life changing. The only hassle has been trying to get other surgery set up where bleeding is a risk. Managing INR becomes part of life, much like other hygiene rituals.
 
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.......So mechanical was my only option really. He said mechanical valve + dracon graft could see me up until 90 although this was unlikely as life expectancy of men is around 77! However, he did warn me about infections etc and Pannus growth (which is is Very uncommon...). He also pointed out that it was hard to give a definite answer because nobody has actually had a valve in that long due to everything being so new. He could give me a more accurate answer in 50 years I guess!

Mechanical was my only option in 1967 as "tissue valves" were still on the "drawing board". I remember a conversation with my cardio, that my valve should last 50 years...and since life expectancy was 73 at that time, it should last my lifetime, as I was 31. I did not believe my cardio, but since I have passed 73, I guess he was right....although most of the young cardios I now see are amazed that I still have the original valve and it shows little "wear and tear".:thumbup:
 
Great feedback:thumbup:,,,,,, just shocked you got this many words out of a surgeon; sounds like a great doc.

Yeah although I had a list of questions that I was going to ask so he didn't really have a choice! However he was very willing to help. As far as he is concerned once the valve is fixed it is down to you to keep INR in check and be healthy. Yes there can be problems but mechanical valves almost never fail so as long as you go for your yearly check up there should always be time to correct any problems.
 
Mark
I like your surgeon! You're in good hands. Have you considered home monitoring? It's the best tool you can have.
This should be a "sticky".

Yes, home monitoring seems essential to me.
 
Hi Lyn, he said it's probably because I was so young and he wasn't at all surprised it had deteriorated so quick? Probably nothing to do with the valve itself, more my body destroying it! I'm not sure if they are sending it out but I would love to know. Anyway, I enjoyed an extra 4 years of no limitations on what I can do although he said a mech valve shouldn't really change anything, I also asked him about the Ross procedure. From his experience he said that bicuspid aortic valves have much less success with the Ross procedure because of sizing issues. I didn't ask him to go into more detail about this. However, he said the Ross was great for children as the valve generally grows with the patient.

So mechanical was my only option really. He said mechanical valve + dracon graft could see me up until 90 although this was unlikely as life expectancy of men is around 77! However, he did warn me about infections etc and Pannus growth (which is is Very uncommon...). He also pointed out that it was hard to give a definite answer because nobody has actually had a valve in that long due to everything being so new. He could give me a more accurate answer in 50 years I guess!

First, let me say I think a mech valve is a great choice for a person in their 20s who is having their 2nd OHS. It makes alot of sense if it's an option.
Yes tissue valves tend to last shorter in younger people, but 4 years is pretty short even for children, who usually outgrow theirs on top of the calcification issues. Do they know from what they could see so far, if the problem seems to be the leaflets calcifying or pannus or anything else, or won't they really know until they open you up. (which is pretty common, in our experience, they could tell Justin's conduits, or valve were stenosised but weren't sure why/how until they could see it during surgery, or during the cath one time) I was wonderring has your valve gradually been getting more stenosised over the last couple years (well 2 or 3 since you've only had it 4 years) and they've been watching it, or was it fine all along then suddenly was blocked this year? Sorry for all the questions, but Justin is around your age. He's had a few surgeries and sometimes were were watching his parts slowly getting worse and another times we were pretty much blindsided and it got bad very fast.

It will be interesting to see how the valve is when they take it out, when they can see it and what caused the stenosis. I know its relatively rare, but there have been reports of Mosaics failing early, even in elderly people. It's probably a coincidence, but even here it seems a few of the people whose valves need replaced earlier than expected had Mosaics, I don't know how it works in the UK, but in the US I know some have been sent to the FDA, if they don't look like the normal wear /tear, some have weird "bumps' type things.
Again the vast majority of mosaics are doing great, (which they should since it is basically the 'new, improved, hancock) but it could be good to know why it needed replaced so soon, incase it was pannus or some kind of growth or clot or something that might make valve choice important or something to watch for /try to prevent.

Hopefully your new valve and graft will last the rest of your long, happy life..or at least until your little kids are grandparents :)

PS, I meant to ask if you are having the same surgeon? That sounds like it would be good if they could put in a larger valve
 
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Very similar to my surgeons beliefs (also UK). I went mech at 58 and would add the following

1) Travel Insurance - Tesco online will cover me at standard rates for a trip in 12 months - I had to tell them I can climb 2 flights of steps without being out of breath.

2) I went from twice weekly INR tests to weekly, fortnightly then after three weeks it has dipped a bit - so re-test next week. The NHS manages it very well.
Beware of bruising though - I got a nice purple leg from what I thought was a small knock.

3) Get an annual prescription pass if you are on several medications.

4) I usually hear the valve when reclining or lying in bed. I have not been disturbed by it.
 
Lyn,

my valve was fine for the first 2.5 years , mean gradient was about 25.. Then my next follow up was 1.5 years on due to a cancellation etc so its hard to say. However, my last year has been rather manic, I moved to London and probably did twice as much as I did the following years. I have no idea if this changed the situation or not...

Unfortunately the surgeon did say he see's this happen more often than people think. I said I was expecting at least 10 years with this valve. He said I would have been lucky although clearly some peoples do last, even at a younger age.

I don't think they really know what the problem is. I guess they will see when they take it out although I'm guessing it became calcified/ worn out.. He said Pannus was v unlikely. I would love to know what happened though.

I'm not having the same surgeon. The reason they are using the graft is so they can fit a bigger valve in. I was a little worried about the graft but apparently it will make the whole thing more robust..

Hopefully my mech valve won't let me down! I don't want a 3rd op any time soon. Justin sounds like a very brave guy, hope all is going well for him now. Does he have a mech valve?
 
@ LeakyUK

-That's great about the travel insurance especially at standard rates. The doc said there are a few around but will normally be more. Thanks for this. Very useful.
-Is the any reason you don't do home testing for your INR? I'm guessing you will down the line.
- makes sense to get an annual prescription pass.
-not too bothered about hearing the valve as long as it's clicking we are still living I guess!
 
Hi,

Just a small comment on the above being a fellow UK member - Home Testing over here is very hit and miss in relation to NHS supplying to you after 4 - 6 months. Please check with your GP that they will provide this - My GP flatly refuses to give me one of these and when i suggested there were GP's that did offer this service he stated that he has NEVER 'prescribed' one and NEVER will !! My cardiologist had said it would be an option ;o( .

To say i was rather annoyed is an understatement, i am 40 yrs old (AVR 2007) and unless i change my doctor and keep my fingers crossed that the new one will prescribe i am stuck with fortnightly visits to the hospital (INR still very unstable, never been more than 4 weeks without a required test).

Leaky gave good advise, get a pre-payment prescription card - it works out so much cheaper especially as each different warfarin 'dosage' is charged as one item. Therefore if you have 5mg, 3mg and 1mg prescribed then you are paying + £21 a month !!

Good luck anyway x
 
Lyn,

my valve was fine for the first 2.5 years , mean gradient was about 25.. Then my next follow up was 1.5 years on due to a cancellation etc so its hard to say. However, my last year has been rather manic, I moved to London and probably did twice as much as I did the following years. I have no idea if this changed the situation or not...

Unfortunately the surgeon did say he see's this happen more often than people think. I said I was expecting at least 10 years with this valve. He said I would have been lucky although clearly some peoples do last, even at a younger age.

I don't think they really know what the problem is. I guess they will see when they take it out although I'm guessing it became calcified/ worn out.. He said Pannus was v unlikely. I would love to know what happened though.

I'm not having the same surgeon. The reason they are using the graft is so they can fit a bigger valve in. I was a little worried about the graft but apparently it will make the whole thing more robust..

Hopefully my mech valve won't let me down! I don't want a 3rd op any time soon. Justin sounds like a very brave guy, hope all is going well for him now. Does he have a mech valve?


It sounds like it would be good, to be able to get larger valve, or one with a larger opening even if it is the same "size" since it looks like if your gradient was about 25 in the beginning, you already started out with mild or moderate stenosis, depending which charts for gradients you go by. With a larger opening, even If you do tend to build more tissue than other people,(Justin is a champ scar builder according to his surgeons) it wouldn't make as much a difference compared to the same amount in a smaller valve /graft opening.

Justin has quite a few things wrong with his heart, his first OHS was when he was 10 days old and 2nd 18 months. Right now he has a tissue (bovine) pulmonary valve (got in 05 when he was 17) and dacron conduits (grafts)-- well 1 dacron and 1 gortex, but thats a long story) but most surgeons rec tissue valves on the right side of the heart, so thats different. He's doing well , thanks for asking, he just had his yearly appt and everything we are waching is "stable" so that works for us.

I'll keep you in my thoughts
 
Sensible surgeon that. I had my surgery in the UK as we don't have any cardiac surgeons in the Channel Islands, the population is too small. I have two mechanical valves, I was 56, warfarin is not a problem.

As for travel insurance, I have an annual one for unlimited Eurpean trips, £61.10 per year and they know that I have two mechanical valves plus type II diabetes. I just have to undertake not to travel if I am aware of a problem brewing which of course I wouldn't as there is no way that I would choose to be anywhere other than here if anything blew up.

The conditions for my travel insurance are:

a - Not waiting for an operation or hospital consultation other than regular check-ups
b - Not received treatment other than regular medication in the past 12 months for:
any blood disorder
Psychiatric illness
Cancer, leukaemia or tumour
A transplant
Dialysis treatment
Dementia
c - HIV if has required treatment for HIV or HIV related illness
d - Heart or breathing problem which has needed hospital treatment in last 12 months
e - Not been seen by a specialist in last 3 months other than regular check-ups or admitted to hospital overnight
f - Not been given a terminal diagnosis by any doctor
g - Don't know of any reason why trip might be cut short or cancelled

I have to agree with the above before planning any trip which is fine.
 

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