Plain old AVR

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PAN

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Joined
Oct 17, 2019
Messages
9
Location
UK
When I found this site about 7 years ago my favorite pastime was to read through as many stories as I possibly could. Without doubt it has been the biggest help to me over the years as I wait and plan for what will eventually come. A plain old aortic valve replacement I hope. I read that description in another thread recently and I found it quite amusing. As conditions and procedures go it’s probably the best case. I think. I’m not usually one for online forums but I have taken a lot from here over the years and maybe some nugget of information in this story will help another in future.

Initially I had injured my back and was at my GP to investigate a slight shortness of breath. He heard the murmur and sent me on to my cardiologist. My back healed and my breathing returned to normal. Bicuspid valve, some regurgitation and some stenosis. Usual workup, standard echo, CT, Carotid scan, TEE, bloods. Initially 6 month checks quickly settling into annual check ups. My ejection fraction has always been greater than 65 and valve area of 1.2cm approx. Pressure gradient was never mention in my earlier reports, regardless I was oblivious of its significance initially.

As I was in my early thirties at the time, he said it would be a mechanical valve should we need to do it in the next few years. After spending time here and considering the options it’s not even a decision for me to make. I’m so perfectly comfortable with the idea of a mechanical valve. Yes I keep an eye on the new technologies coming our way. Polymer valves sound interesting but they would need a lot of clinical data behind them before I’d be convinced. Tri-leaflet mech valves are also intriguing but seem slow to progress. All of the options to reduce coagulation with some modern mech valves are of zero interest. I feel I have an understanding of the AC therapy and reducing it marginally doesn’t have enough upside for me. That level of comfort with AC therapy is completely down to this site. It will not be the last time but I thank you all. I had come to the conclusion that the ON-X valve was best option, for quietness and to protect against pannus ingrowth. Most modern mech valves will do the job I’m sure. I will not reduce AC on an ON-X valve. I will monitor INR weekly regardless.

So I’m about 8 years into the monitoring phase but I feel things are changing. The mind games that go with a slowly degrading valve. Hilarious at times, stress inducing at others. I’ve started experiencing a slight light headedness. Not always but it comes and goes. Have never suffered from headaches at all but these have also become a nearly daily occurrence. I’m generally fit and try train a few times per week. There is a slight performance reduction there to. My peak pressure across the valve mid year was 65mmHg so that has my attention as it's my highest ever. Have scheduled a TEE before the end of the year and think it will be time for a more detailed chat with my cardiologist. The progression of the disease has always been very interesting but at the same time very difficult to judge. We will all progress at our own rate. So I shall try document things here. The changes in my symptoms and the changes in my results. Not that they will be the same as yours. Information has helped me to understand this and I hope reading this may help another.

P
 

LoveMyBraveHeart

Well-known member
Joined
Aug 6, 2019
Messages
79
Location
USA
When I found this site about 7 years ago my favorite pastime was to read through as many stories as I possibly could. Without doubt it has been the biggest help to me over the years as I wait and plan for what will eventually come. A plain old aortic valve replacement I hope. I read that description in another thread recently and I found it quite amusing. As conditions and procedures go it’s probably the best case. I think. I’m not usually one for online forums but I have taken a lot from here over the years and maybe some nugget of information in this story will help another in future.

Initially I had injured my back and was at my GP to investigate a slight shortness of breath. He heard the murmur and sent me on to my cardiologist. My back healed and my breathing returned to normal. Bicuspid valve, some regurgitation and some stenosis. Usual workup, standard echo, CT, Carotid scan, TEE, bloods. Initially 6 month checks quickly settling into annual check ups. My ejection fraction has always been greater than 65 and valve area of 1.2cm approx. Pressure gradient was never mention in my earlier reports, regardless I was oblivious of its significance initially.

As I was in my early thirties at the time, he said it would be a mechanical valve should we need to do it in the next few years. After spending time here and considering the options it’s not even a decision for me to make. I’m so perfectly comfortable with the idea of a mechanical valve. Yes I keep an eye on the new technologies coming our way. Polymer valves sound interesting but they would need a lot of clinical data behind them before I’d be convinced. Tri-leaflet mech valves are also intriguing but seem slow to progress. All of the options to reduce coagulation with some modern mech valves are of zero interest. I feel I have an understanding of the AC therapy and reducing it marginally doesn’t have enough upside for me. That level of comfort with AC therapy is completely down to this site. It will not be the last time but I thank you all. I had come to the conclusion that the ON-X valve was best option, for quietness and to protect against pannus ingrowth. Most modern mech valves will do the job I’m sure. I will not reduce AC on an ON-X valve. I will monitor INR weekly regardless.

So I’m about 8 years into the monitoring phase but I feel things are changing. The mind games that go with a slowly degrading valve. Hilarious at times, stress inducing at others. I’ve started experiencing a slight light headedness. Not always but it comes and goes. Have never suffered from headaches at all but these have also become a nearly daily occurrence. I’m generally fit and try train a few times per week. There is a slight performance reduction there to. My peak pressure across the valve mid year was 65mmHg so that has my attention as it's my highest ever. Have scheduled a TEE before the end of the year and think it will be time for a more detailed chat with my cardiologist. The progression of the disease has always been very interesting but at the same time very difficult to judge. We will all progress at our own rate. So I shall try document things here. The changes in my symptoms and the changes in my results. Not that they will be the same as yours. Information has helped me to understand this and I hope reading this may help another.

P
Hi!
Just stopping in to say it sounds like you have done your research and have your plan in place for when AVR time comes...which for us was more than half the battle! On-X is what we went with too...The click is very noticeable to me, but Mathias can't hear it and often thinks I'm lying when I tell him I hear him a-clickin'! (he is the one with the mech valve). Having nothing to compare it to (I've never heard a mech valve other than the On-X), I'm not sure if it's quieter or not. He also had his ascending aorta replaced and some have mentioned that this can make the click sound louder.

We aren't far enough into recovery to need to start self testing (only 3 months post op, and still testing weekly at the ACC because of med changes and such), but we will be starting that journey very soon. Everyone here has made me feel so much more comfortable about it, it is no longer a subject that seems like a black hole that will suck the life out of me.

I am sorry to hear you symptoms are getting more noticeable. Mathias had light headedness too, and would lose his breath pretty easily before the surgery. He is doing incredibly well now and is already able to be much more active than he was before his surgery. I hope this is the same case for you, whenever you chose to have your surgery done.

I guess the TL;DR version is, I wish you the best of luck, whether you continue your monitoring or jump into having your surgery done. The folks here are incredible, and I call many of the my "valve site friends" when referencing them to people in my personal life. I live for their sarcasm, bad jokes, nitty gritty details, and mostly their compassion and kindness. Here for you!

Jill
 
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Seaton

Well-known member
Joined
May 13, 2015
Messages
320
Location
London, UK
When I found this site about 7 years ago my favorite pastime was to read through as many stories as I possibly could. Without doubt it has been the biggest help to me over the years as I wait and plan for what will eventually come. A plain old aortic valve replacement I hope. I read that description in another thread recently and I found it quite amusing. As conditions and procedures go it’s probably the best case. I think. I’m not usually one for online forums but I have taken a lot from here over the years and maybe some nugget of information in this story will help another in future.

Initially I had injured my back and was at my GP to investigate a slight shortness of breath. He heard the murmur and sent me on to my cardiologist. My back healed and my breathing returned to normal. Bicuspid valve, some regurgitation and some stenosis. Usual workup, standard echo, CT, Carotid scan, TEE, bloods. Initially 6 month checks quickly settling into annual check ups. My ejection fraction has always been greater than 65 and valve area of 1.2cm approx. Pressure gradient was never mention in my earlier reports, regardless I was oblivious of its significance initially.

As I was in my early thirties at the time, he said it would be a mechanical valve should we need to do it in the next few years. After spending time here and considering the options it’s not even a decision for me to make. I’m so perfectly comfortable with the idea of a mechanical valve. Yes I keep an eye on the new technologies coming our way. Polymer valves sound interesting but they would need a lot of clinical data behind them before I’d be convinced. Tri-leaflet mech valves are also intriguing but seem slow to progress. All of the options to reduce coagulation with some modern mech valves are of zero interest. I feel I have an understanding of the AC therapy and reducing it marginally doesn’t have enough upside for me. That level of comfort with AC therapy is completely down to this site. It will not be the last time but I thank you all. I had come to the conclusion that the ON-X valve was best option, for quietness and to protect against pannus ingrowth. Most modern mech valves will do the job I’m sure. I will not reduce AC on an ON-X valve. I will monitor INR weekly regardless.

So I’m about 8 years into the monitoring phase but I feel things are changing. The mind games that go with a slowly degrading valve. Hilarious at times, stress inducing at others. I’ve started experiencing a slight light headedness. Not always but it comes and goes. Have never suffered from headaches at all but these have also become a nearly daily occurrence. I’m generally fit and try train a few times per week. There is a slight performance reduction there to. My peak pressure across the valve mid year was 65mmHg so that has my attention as it's my highest ever. Have scheduled a TEE before the end of the year and think it will be time for a more detailed chat with my cardiologist. The progression of the disease has always been very interesting but at the same time very difficult to judge. We will all progress at our own rate. So I shall try document things here. The changes in my symptoms and the changes in my results. Not that they will be the same as yours. Information has helped me to understand this and I hope reading this may help another.

P
Greetings @PAN Thanks for the introduction to your story. Really good to hear you are on top of things, monitoring wise.

I had my surgery last August 7th. And recovery is progressing well.

I wish you all the best for the days ahead and look forward to your updates. 😉
 
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pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
6,567
Location
Queensland, OzTrayLeeYa
Hi @PAN

So I’m about 8 years into the monitoring phase but I feel things are changing. The mind games that go with a slowly degrading valve. Hilarious at times, stress inducing at others. I’ve started experiencing a slight light headedness. Not always but it comes and goes.
it can indeed be ... even if you jorunal only for yourself its always valuable to you.

Best Wishes
 

CatDad82

Member
Joined
Jul 1, 2019
Messages
7
I feel you. I had my AVR at 37. The time between discovering your heart isn’t tip-top and actually getting it fixed is hard. Don’t get lost in your mind. The people who do heart surgery know their business.
 

DachsieMom

Well-known member
Joined
Mar 3, 2015
Messages
289
Location
CT
Sounds like you are very informed. This site was very helpful to me as well.
 

ottagal

VR.org Supporter
Joined
Aug 8, 2008
Messages
2,501
Location
Can.
Welcome. :) Glad you have done your research and are keeping up to date on the progression and status of your valve. Knowledge is power.
All the best and as others said, this forum has been invaluable to many of us. Keep us posted.
Best wishes,
 

PAN

Member
Joined
Oct 17, 2019
Messages
9
Location
UK
Thank you for the words of encouragement, nice to vent to people in the know:)

The click is very noticeable to me, but Mathias can't hear it and often thinks I'm lying when I tell him I hear him a-clickin'! (he is the one with the mech valve).
I had noticed that quite a few people felt the on-x valve could be pretty quiet. I think the medtronic valve also has a good reputation in this regard. The dacron graft also has a slight reputation for amplifying the noise I believe? I'm glad you are both getting used to it. I don't think it would bother me very much, I hope 🤞



I live for their sarcasm, bad jokes, nitty gritty details, and mostly their compassion and kindness.
The nitty gritty details, that's what I have really enjoyed. Reality. Always been my preference to hold back the sugar coating.


The people who do heart surgery know their business.
Thank you , another day at the office for these guys. Easy for patients to forget that. Will do well to remind myself of that as they wheel me in :)
 

ForeverThankful

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Joined
Oct 22, 2015
Messages
147
Location
Long Island, New York
Hi PAN!

I have a St Jude mechanical valve. I've had it for 4 years and have never heard any clicking.

As far as Warfarin goes, I test with a meter at home and it hasn't been a problem. This site, Pellicle in particular, has been of great value in learning how to maintain INR etc.

Best Wishes!
 

Astro

Well-known member
Joined
Aug 26, 2019
Messages
71
Location
Adelaide, Australia
So I’m about 8 years into the monitoring phase but I feel things are changing. The mind games that go with a slowly degrading valve. Hilarious at times, stress inducing at others. I’ve started experiencing a slight light headedness. Not always but it comes and goes. Have never suffered from headaches at all but these have also become a nearly daily occurrence. I’m generally fit and try train a few times per week. There is a slight performance reduction there to. My peak pressure across the valve mid year was 65mmHg so that has my attention as it's my highest ever. Have scheduled a TEE before the end of the year and think it will be time for a more detailed chat with my cardiologist. The progression of the disease has always been very interesting but at the same time very difficult to judge. We will all progress at our own rate. So I shall try document things here. The changes in my symptoms and the changes in my results. Not that they will be the same as yours. Information has helped me to understand this and I hope reading this may help another.

P
I agree about the “mind games” that go with a deteriorating valve. Am I more short of breath than usual after going up those stairs? Is this puffing normal after stairs? Is it in my head or is it real? I am constantly asking myself these questions.

Your cardiologist will guide you to the appropriate time for intervention. For your own monitoring, peak aortic velocity is the most reliable echo measurement for aortic stenosis (> 4 m/s is severe). It is a direct measurement so tends to be more reliable than computed variables like valve area. Mean gradient (> 40 mmHg is severe) is the next best. Peak aortic velocity tends not to be used to grade severity.

Glad that you appear to be at peace with the mechanical vs tissue question. Sounds like you have done your homework.

Best wishes
 

Keithl

Well-known member
Joined
Apr 20, 2019
Messages
279
Hi PAN!

I have a St Jude mechanical valve. I've had it for 4 years and have never heard any clicking.

As far as Warfarin goes, I test with a meter at home and it hasn't been a problem. This site, Pellicle in particular, has been of great value in learning how to maintain INR etc.

Best Wishes!
you are lucky, I have an On-X and here it when it is quiet around me or laying in bed trying to sleep. Fortunately I tuned it out quickly.
 

PAN

Member
Joined
Oct 17, 2019
Messages
9
Location
UK
Hi PAN!
I have a St Jude mechanical valve. I've had it for 4 years and have never heard any clicking.
As far as Warfarin goes, I test with a meter at home and it hasn't been a problem. This site, Pellicle in particular, has been of great value in learning how to maintain INR etc.

Best Wishes!
Hi, that is a brilliant result. I shall hope for the same but there is a strange part of me that would like to hear it to :)

Yep I've read a lot of posts from Pellicle, in particular about AC therapy. I shall be going back there to fill up once again.


I agree about the “mind games” that go with a deteriorating valve. Am I more short of breath than usual after going up those stairs? Is this puffing normal after stairs? Is it in my head or is it real? I am constantly asking myself these questions.
Over the last few years I have had some sort of breathlessness. In particular if I stood from a couched position. The stairs get me to , I can climb them fine but can be oddly out of breath for a minute or two. However until recently I could settle into a jog no problem. That may be changing but need to check. Tweaked my back again which isn't helping matters.


you are lucky, I have an On-X and here it when it is quiet around me or laying in bed trying to sleep. Fortunately I tuned it out quickly.
It seems that the loudness of the valve could have more to do with the patient physiology than the valve itself. So I won't stress the noise too much, will have to wait and see what I get :) Glad you have adapted to it over time. Best of luck..

My on x is quite loud. It doesn't bother me, but when I tried cutting down on the beta blocker, my heart rate sped up and it annoyed me.
Have you had to go back on the beta blocker? Has your heart rate returned to normal ? I do need to read a little more on some of the medications that could come my way. Hopefully you've slowed the tick and the annoyance is gone.
 

Agian

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Joined
Jun 10, 2013
Messages
2,255
Location
Adelaide, South Australia
The Atenolol has kept my heart rate very steady. It is very much like a watch at 60 bpm. I'm very used to it. I tried weaning myself off the Atenolol and one night my heart rate got up to about 90, which is perfectly normal. I couldN't get to sleep, so I aborted the weaning-off plan.

My on x is the biggest size. I can feel/sense it if I notice it. It doesn't bother me. It's the new normal. However, I'm not used to the variation in heart rate off the beta blocker (Atenolol). It's no biggie though.

How old are you PAN? 'Aesthetically', I can only see it being a problem for a young woman. It shouldn't be, but they're very self-conscious and might view the clicking as 'unattractive'. There was a woman who joined us recently who said she was looking for a soulmate.
 
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PAN

Member
Joined
Oct 17, 2019
Messages
9
Location
UK
How old are you PAN? 'Aesthetically', I can only see it being a problem for a young woman. It shouldn't be, but they're very self-conscious and might view the clicking as 'unattractive'. There was a woman who joined us recently who said she was looking for a soulmate.
I'm 40 and I have no worries about the clicking internally or externally. If I hear it I will deal with it and would bet that I may actually enjoy the sound.. Will be interesting to see what happens. This has been a tiring week. Some wine is in order.
 

epstns

Premium User
Joined
Dec 26, 2002
Messages
5,095
Location
Chicago area
Hello, Pan,
Glad you've found us and have decided to stick around. We used to have a "virtual waiting room" here, and I used to welcome new folks to join, hang around in the waiting room, and ask all the questions they wanted. We are here to help, however we are able. I have been less active for a bit, not for heart-related reasons, though.

I can really understand the mind games we go through. I had over 11 years to torture myself. The folks here taught me a lot about the choices we need to make, the surgery, the recovery and even things about how to control my mind so as to not go crazy while I was, myself, in The Waiting Room. It is difficult, but manageable.

One way I kept track of my own deteriorating valve was to keep an exercise diary. I have been an active gym rat for decades. I ran daily right up until my surgery at age 63. After that, running was a problem (knees say "no"), but I'm still the gym rat, almost 9 years post-AVR. Prior to surgery, I kept a close watch on my time and distance as I ran, and watched for any deterioration in my performance. I cautioned myself not to worry about "a bad day" or a minor downward trend. In fact, I never did see that "falling off the cliff" of a failing valve. I finally decided for myself that it was time for surgery by telling my cardio "I am tired of being tired." Since my stats had been in the "surgery" zone for years, we just picked a date and the rest is history.

Yes, these things usually get worse. The good thing is that the greatest majority of valve patients aren't surprised when it is time for surgery. They can usually feel it coming.
 

PAN

Member
Joined
Oct 17, 2019
Messages
9
Location
UK
Thank you epstns... I remember the virtual waiting room. One way or another we still spend some time there.

For the most part the mind games are under control. Some days are worse than others but that is inevitable.

I would also consider myself a gym rat and the plan was to maintain a good level of fitness for as long as possible. I record my workouts on a Garmin watch. About 2/3 cardio and 1/3 weight training. Running has always been my go to exercise. So I can look at the data for this year and see the deterioration over time. most of it i can explain away. During periods of light headedness I decided to rest up a bit. I recently went back to converting to barefoot running, it slows me down a little which is a good thing right now. So that also shows up as a slight decrease month on month. generally though , just feeling a little slower, more lethargic. Could be a drop in fitness , could be the valve starting to bite. no jumping to conclusions though, will wait for the TOE measurements and go from there :)

Oh , about 18 months ago I tried change to barefoot running. Too much too quickly, one way to seriously screw up your calves and achilles :) i want to do i though as it should prevent injury. It just feels better to me so i will stick at it.

I have a feeling my next chat with my cardio could go the same way yours did. It has been a year and he will ask how things have been. they could easily be summarised by saying that I am sick of feeling like sh!t !! So we shall see ho it goes, may try a run tomorrow , have a beer and relax..

thanks for your comments, they help a lot..

P
 

Freebird

Member
Joined
Sep 27, 2019
Messages
10
I too am in the Waiting Room. It's been a year now. I'm in the severe AS category, awaiting symptoms or a worsening exhibited my 6-month echo. I feel my affairs are in order as I've met with two cardiologists and two surgeons and I've made my choices in those categories.

This past year, particularly the first month after diagnosis (out of the blue) was extremely stressful. Since then I have managed my stress with meditation and that's been a great, drug-free savior. Having a couple of bouts of vertigo didn't help with the questioning of symptoms but of late I've been feeling extremely 'normal' so I am appreciating every moment I'm given.

I enjoy doing Jazzercise 6 days a week, which is a moderate cardio+weight-training workout. Ever since my diagnosis I just try to moderate my workout so as not to take my body to extremes and so far so good.
 

LondonAndy

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Joined
Aug 1, 2015
Messages
341
Location
London, UK
I didn't do much research before needing my aortic valve replaced - although I had symptoms, I was going through a series of tests, sometimes months apart which was frustrating, and ended up having a "cardiac event" (ie I thought it was a heart attack but turned out not to be) which took me in as an emergency case and then everything just happened. Although I had the conversation with the surgeon about tissue versus mechanical, there was no other detail discussed and I went with their advice. I have been happy with the treatment, once I got into hospital.

I have a 29mm St Jude valve. If I pay attention I can hear it click, but I have to make an effort. Partners I have slept it seem similarly not bothered, but as I ended up getting a pacemaker through surgical complication, and my resting rate is 60 beats per minute, it sometimes comes in handy to time something ... :)
 

Protimenow

Well-known member
Joined
Aug 10, 2010
Messages
2,797
Location
California
One piece of advice: don't get a cheap mechanical watch. I once bought an old Mickey Mouse watch - these old watches tick six times a second. The first time I wore it, my wife thought I was having tachycardia.

(A second comment - when you have a mechanical valve, it's hard to play hide and seek with your kids - they could hear me through a door.)
 
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