Looking for some advice

[Guest]

Hi all. New to this forum and so glad to find others in the same boat as me.

So my history, I received a homograft aortic valve in August 2008, due to endocarditis from an impacted wisdom tooth. No issues at all with the valve in the whole 9.5 years I've had it.

So I don't know if it's because I'm coming up on 10 years now but I'm becoming a lot more conscious and aware of my condition and was hoping for your feedback. I'm under no illusions that I will need this valve changed soon but how will I know when it's needed? I'm still on annual check ups and my cardiologist seems happy with the valve. I realise that my cardiologist knows best and I do trust her advice but I just wantes to know what go expect when things do start to go downhill.

Also, what impact does excercise have on the life of the valve? I've read some disturbing stories of an increase in the risk of sudden death, as the valve starts to deteriorate, which is making me question my exercise routine.

Apologies for sounding alarmist. I just want to get an idea of what the next few years will hold.

Regards
Andy

 

[pellicle]

Hi Andy

myself I had a homograft done as my 2nd OHS (Open Heart Surgery) but that was back in 1992, I was 28.

That valve lasted me about 20 years when it was replaced. It was replaced more because of the discovery of an aneurysm than because the valve was becoming dysfunctional. It was beginning to leak and become "stenotic"

There are many factors which influence how long a valve can last and the only way to be "on top of it" is regular checkups where they not only monitor the state but by seeing how its going can make some projections. This will enable them to let you know the situation. And yes, you're right, the medical team are the ones to trust. Unless you feel strongly that you have lost fitness unduly and they aren't of the view that there is a problem. This is uncommon however,

The more common thing is that you feel no symptoms, but they are able to say that (for instance) "the heart is enlarging" or "the pressure gradients are too high" ...

So its when one of those above things occur that will drive the surgery.

If you were to follow my "situation" then you've got another 10 years left

Exersize is good until you start to see signs of calcification. For instance in my case in the last years of my valve I was:

• bapckpacking around Korea and China
• cross country skiiing in Finland (like 3 or 4 times per week for an hour on the local ski track)
• cycling everywhere I could (like I didn't own a car)

I only went in for a checkup (I'd gotten slack cos it wasn't changing for 10 years) because I felt my track times weren't improving despite my improvement in technique ... and they found the aneurysm ...

You didn't sound alarmist ... you sounded like someone just asking questions.

I hope I've helped

Best Wishes

 

[Andy D]

Pellicle

Thank you for your generous response. Very much appreciated.

Wow 20 years is fantastic!! I had always been under the impression that they didn't last as long in young individuals but that is incredible! I was 23 when I got mine, so I'll keep my fingers crossed I'm as fortunate as you!

With regards to calcification of the valve, do you happen to know if an ekg would pick that up? I haven't had an echo for a couple of years, only ekg which always seems to come back normal.

Again, thank you for your response.
Andy
​​

 

[epstns]

Hi, Andy. I doubt that an electrocardiogram will pick up much unless you either have a nerve conduction issue or have had a heart attack that caused nerve damage. The only way to get a real idea (and it is only just an "idea" - not excessively precise) of what is going on with your valve is by an echocardiogram. The ECG only traces electrical activity within the heart, not the flow of blood through the valves. You need to have a cardio do an echo and evaluate the valve.

That said, you probably should follow a maintenance routine similar to that of an aortic stenosis patient - periodic echo's to watch the condition and performance of your valve. Who knows? You may have many years to go before your valve needs replacement.

 

[tom in MO]

....how will I know when it's needed? Your cardiologist will most likely tell you. You, yourself, probably won't "know." The echocardiogram will show how your valve is changing and when it needs replacement. You might experience a decrease in stamina but most people don't realize it until they have the new valve put in.

What impact does excercise have on the life of the valve? None. Good health and exercise is good for the heart, even with a replacement valve. Valve failure is not associated with exercise or lack of it. Any increase risk of a possible "sudden death" incident would be noted by your cardiologist during your routine checkup. Generally they tell you that your time is coming and increase the frequency of your visits until they tell you it's time to schedule the surgery.

You do need to know the signs of a valve problem just in case. In general it is unusual fatigue, shortness of breath, especially when you exert yourself or when you're lying down, fainting or dizziness.

 

[pellicle]

Hi Andy

you're welcome

Wow 20 years is fantastic!! I had always been under the impression that they didn't last as long in young individuals but that is incredible! I was 23 when I got mine, so I'll keep my fingers crossed I'm as fortunate as you!

indeed ... the following is an extract from a report called:

The homograft aortic valve: a 29-year, 99.3% follow up of 1,022 valve replacements.

it was done by the same hospital (Prince Charles in Brisbane Queensland Australia) that did my valve. It makes clear the differentiation between cryopreserved valves and "antibiotic sterilised and stored" valves. They note the following on their method of cryopreservation:

From June 1975 to January 1994, 680 patients received viable allograft valves, now cryopreserved early within 2 hours of collection from transplant recipient donors, 6 hours for multiorgan donor valves and 23 hours (mean) for autopsy valves from donor death.

The summary of data is this:

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).

I'm in the 21-40 years cohort and so 20 years isn't really that far out side the statistical norm for my age group. The valves had good structural function at 15 years, with 85% still not needing replacement. I would have probably got by with a few more years if aneurysm wasn't a driver for my surgery.

I would think that as you were not a Bicuspid Aortic Valve (you mentioned endocarditis) that aneurysm would be less likely in you.

remember all these things are distilled stats, and by nature general - not accurate predictors of you.

With regards to calcification of the valve, do you happen to know if an ekg would pick that up? I haven't had an echo for a couple of years, only ekg which always seems to come back normal.

I'm inclined to feel not, but I do understand that a good clinician can read a lot into an ECG (and ECG is an EKG, but the US introduced EKG to make clear the difference to EEG). When I was a younger lad all that they had was an ECG and X-Rays ... now we depend more on Ultrasounds and (when called for) CT scans to give more definitive (imaging) diagnosis.

I'd say that you should keep your self in good shape, don't try to push the envelope as being a top sporting competitor but do do training and regular exersize. Don't smoke and eat well ... you'll live a long and happy life ;-)

I'm off to Finland again to get some exposure to the snow for a few months (the 35°C days are not for me).

Best Wishes

 

[amarG]

Holy Smokes Pellicle! Those are impressive stats. So why dont they offer homografts as an option? Is it a supply issue?

 

[pellicle]

Those are impressive stats. So why dont they offer homografts as an option? Is it a supply issue?

indeed ... I'm of the understanding that its both supply (I had to wait for a suitable donor to appear and be ready to move at short notice) and that to get those results you have to be meticulous (even for a surgeon). The slightest touch of the valve leaflet surface will compromise it. The surgeons who did my operation were sort of pioneers in their field. Dr's O'Brien and Stafford specialised not just in valve surgery but in allograft valve surgery.

My observation of surgeons is that not all are great craftsmen ... put another way, anyone can train to make origami, but only a few are brilliant.

Its easier to install something off the shelf and get a "good result" without risking a poor result. I mean we are talking about people's lives

 

[honeybunny]

I went to a cardiologist in May 2015 because of shortness of breath. My EKG was fine; the echo showed stenosis, which showed to be moderate to severe in a follow up TEE. I had AVR surgery in September of that year though my cardio said I had about a year till replacement was needed.

 

[dornole]

It seems like most people are on yearly echoes here, or 6 mos if there are concerns. Just FYI. I had to laugh about the EKG because when I started this heart thing I thought they we the same thing! I went from urgent care to the local hospital, arrived before the orders and told them I needed an EKG so they did one and sent me home. An hour later I get the call to come back to the hospital for an echocardiogram. Derp! Well, live and learn. In my case I was symptomatic including inability to go up one flight of stairs without resting, inability to breathe when lying down at night, and coughing up blood. Don't think you'll be unaware of those. . . . As others have said, once you're known to be a heart patient it's more likely that regular echos will determine when it's time than symptoms will. Wishing you a long shelf life on your valve!