Agian
Well-known member
That's so cool that you're a drummer Thomas.
Younger aortic valve replacement patient experience
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pellicle
Professional Dingbat, Guru and Merkintologist
The one to someone else or the long detailed one at the top
pellicle
Professional Dingbat, Guru and Merkintologist
Totally agree
MarkU
Well-known member
I got my St Jude mechanical valve at age 47, nineteen years ago. I've always been active and was given no restrictions, other than no heavy weight lifting, or lifting-to-failure at the gym.
Two years post-op I started competing in triathlons, continuing until I started having trouble with my knees four years ago. I'm now a full-time Masters swimmer, swimming 5-6 days per week, averaging around 12,000-15,000 yards per week. I compete in swim meets on a regular basis.
I had a bit of a set-back two years ago when I developed AV block and bradycardia, necessitating getting a pacemaker. Just recently, I have also been diagnosed with persistent Afib. The Afib, is minor and my cardiologist isn't overly concerned about it since I already am on Coumadin and have the pacemaker, but he did put me on a small dose of a beta-blocker to see if that helps.
But again, he hasn't given me any restrictions. They have also offered to re-tune my pacemaker if the beta-blocker has any effect on my performance in the pool.
I've been on Coumadin for nineteen years since my surgery and it has really been a non-issue with me. The biggest inconvenience has been doing a Lovenox bridge when I've had any invasive procedures like colonscopies or dental surgery.
I know that I have been lucky compared to some, but my mechanical valve has really not significantly affected my activities or lifestyle.
Two years post-op I started competing in triathlons, continuing until I started having trouble with my knees four years ago. I'm now a full-time Masters swimmer, swimming 5-6 days per week, averaging around 12,000-15,000 yards per week. I compete in swim meets on a regular basis.
I had a bit of a set-back two years ago when I developed AV block and bradycardia, necessitating getting a pacemaker. Just recently, I have also been diagnosed with persistent Afib. The Afib, is minor and my cardiologist isn't overly concerned about it since I already am on Coumadin and have the pacemaker, but he did put me on a small dose of a beta-blocker to see if that helps.
But again, he hasn't given me any restrictions. They have also offered to re-tune my pacemaker if the beta-blocker has any effect on my performance in the pool.
I've been on Coumadin for nineteen years since my surgery and it has really been a non-issue with me. The biggest inconvenience has been doing a Lovenox bridge when I've had any invasive procedures like colonscopies or dental surgery.
I know that I have been lucky compared to some, but my mechanical valve has really not significantly affected my activities or lifestyle.
pellicle
Professional Dingbat, Guru and Merkintologist
my dentist has often remarked that if he didn't know I was on warfarin there would be nothing in my bleeding to give it away. My view is this suggests that many of the "stories" were from situations where INR was out of range on the high side.
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I got my first OHS two years ago at 34. Ended up with an ATS arotic valve and On-X mitral valve, both mechanical. Valve choice was made by the surgeon, primarily focus was to avoid the need for reoperation.
Apart from limiting my alcohol intake and regular training I live my life the same way I did before the operation. I self test and self dose, and despite a narrow therapeutic range (3,0-3,5), I've only been drastically outside right after my child was born.
The drawbacks of mechanical valves that I feel is under communicated is noise and impact on other medical procedures.
I'm not sure if the aortic or mitral valve is the real culprit, but these suckers are noisy. I mostly manage to ignore the ticking, but it is loud enough that some of my friends was able to pick it out in a noisy restaurant. A quiet classical concert was a head turning event. I was not able to find it now, but a paper looking into the noise from mechanical valves suggested some patients needs to sleep on their right side, and some even needs sleeping pills due to the clicking.
The other issue is risks and willingness of hospitals to perform surgery on patients on ACT. My mom had a shoulder issue that was scheduled as a routine surgery. After initial checkup the surgery was canceled. The surgeon did not want to risk bleeding with operating with a INR over 2, and the hospital cardiologist did not want to lower the INR to 2 due to risk of clotting.
Knowing what i know today, I still would have gone mechanical given the choice. I'd rather avoid having another OHS if I can.
Apart from limiting my alcohol intake and regular training I live my life the same way I did before the operation. I self test and self dose, and despite a narrow therapeutic range (3,0-3,5), I've only been drastically outside right after my child was born.
The drawbacks of mechanical valves that I feel is under communicated is noise and impact on other medical procedures.
I'm not sure if the aortic or mitral valve is the real culprit, but these suckers are noisy. I mostly manage to ignore the ticking, but it is loud enough that some of my friends was able to pick it out in a noisy restaurant. A quiet classical concert was a head turning event. I was not able to find it now, but a paper looking into the noise from mechanical valves suggested some patients needs to sleep on their right side, and some even needs sleeping pills due to the clicking.
The other issue is risks and willingness of hospitals to perform surgery on patients on ACT. My mom had a shoulder issue that was scheduled as a routine surgery. After initial checkup the surgery was canceled. The surgeon did not want to risk bleeding with operating with a INR over 2, and the hospital cardiologist did not want to lower the INR to 2 due to risk of clotting.
Knowing what i know today, I still would have gone mechanical given the choice. I'd rather avoid having another OHS if I can.
pellicle
Professional Dingbat, Guru and Merkintologist
Hi
Living in Norway I assume you have been given a home testing tool to allow you to self test ... (as I see you mention) below. I can say that it has not limited my alcohol intake (but then if the Norwegians are like the view that the Finns have of them then maybe that's not a bad thing.
I regularly drink about 1 or 2 glasses of red a night, some times a beer first in summer before that, sometimes a whiskey or two after instead ... (or as well ;- )
that's a very narrow range and I would say impracticable, I would draw your attention to studies which have shown that (for an aortic valve) such a range is serving little benefit. For instance this large study which showed that the range of safety is between 2.4 and 4:
Here are a few graphs from my weekly testing spreadsheet
where I had a surgical procedure (and did a pre-surgery INR drop test) and a year where it was "just business as usual"
in the 8 years I've been on ACT I've had no ACT related incidents.
I suspect this is a "in your case" issue because certainly in my reading here that noise is mentioned by many people as a source of the reasons why they chose a tissue valve. I would say that its likely your surgeon didn't mention it (which in my view is stupid) because they thought it is just something you'll get used to (and like you can get used to changes, but you can't get used to permanent ongoing effects of surgical damage, you just suffer them).
it varies, my Dr (my personal GP) when he first saw me after surgery said "wow, they put a real diesel into you didn't they" .. so "I hear ya buddy", however there are others here who report its almost invisible.
for me in a restaruant, no but maybe Australians are noisier than Norwegians ;-)
I have found I don't like to sleep on inner spring mattresses because if I sleep on my right side I can make the springs resonate with each tick, however I've always preferred Futons anyway, so its win win ... my wife could hear the ticking but she seemed to not be bothered by it (but hated the grandfather clock in the hallway).
this next point is what I really wanted to comment on.
this is simply stunning to me because in Australia its totally a part of the pre-surgery to explore that someone is on AC Therapy and to tell them that they have to have their INR below 1.5
For those which high risks of thrombosis heparin bridging is used to allow them to minimise the time in an un-anti-coagulated state, but in low risk cases (and for me with an Aortic valve is the only risk factor) we can simply cease warfarin one or two days prior to the procedure and then resume after. I indeed wrote a blog post about this:
http://cjeastwd.blogspot.com/2017/12/perioperative-management-of-inr.html
indeed its been written in the literature that there is no "cure" for valvular heart disease, we simply replace it with prosthetic valve disease. The advantage of that replacement is that (depending on if you recieve tissue or mechanical prosthetic) you are either managing INR or preparing for the likelyhood of a future valve surgery. The younger you are the more likely that such a future valve surgery is a certainty.
PM me if you want a contact of a fellow from here (this forum) who is a fellow Norwegian (living in Oslo I believe) who may or may not be a good contact for you to bounce ideas off.
Lastly, let me give you my page on the management of ACT that I've written which may help you consider your ACT management in a more "amenable to real life" way.
http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
there is more on INR on my blog, but you can find that easily from the topic list on the left if you wish.
Best Wishes (from an ex-neighbor)
Living in Norway I assume you have been given a home testing tool to allow you to self test ... (as I see you mention) below. I can say that it has not limited my alcohol intake (but then if the Norwegians are like the view that the Finns have of them then maybe that's not a bad thing.
I regularly drink about 1 or 2 glasses of red a night, some times a beer first in summer before that, sometimes a whiskey or two after instead ... (or as well ;- )
that's a very narrow range and I would say impracticable, I would draw your attention to studies which have shown that (for an aortic valve) such a range is serving little benefit. For instance this large study which showed that the range of safety is between 2.4 and 4:
Here are a few graphs from my weekly testing spreadsheet
where I had a surgical procedure (and did a pre-surgery INR drop test) and a year where it was "just business as usual"
in the 8 years I've been on ACT I've had no ACT related incidents.
I suspect this is a "in your case" issue because certainly in my reading here that noise is mentioned by many people as a source of the reasons why they chose a tissue valve. I would say that its likely your surgeon didn't mention it (which in my view is stupid) because they thought it is just something you'll get used to (and like you can get used to changes, but you can't get used to permanent ongoing effects of surgical damage, you just suffer them).
it varies, my Dr (my personal GP) when he first saw me after surgery said "wow, they put a real diesel into you didn't they" .. so "I hear ya buddy", however there are others here who report its almost invisible.
for me in a restaruant, no but maybe Australians are noisier than Norwegians ;-)
I have found I don't like to sleep on inner spring mattresses because if I sleep on my right side I can make the springs resonate with each tick, however I've always preferred Futons anyway, so its win win ... my wife could hear the ticking but she seemed to not be bothered by it (but hated the grandfather clock in the hallway).
this next point is what I really wanted to comment on.
this is simply stunning to me because in Australia its totally a part of the pre-surgery to explore that someone is on AC Therapy and to tell them that they have to have their INR below 1.5
For those which high risks of thrombosis heparin bridging is used to allow them to minimise the time in an un-anti-coagulated state, but in low risk cases (and for me with an Aortic valve is the only risk factor) we can simply cease warfarin one or two days prior to the procedure and then resume after. I indeed wrote a blog post about this:
http://cjeastwd.blogspot.com/2017/12/perioperative-management-of-inr.html
indeed its been written in the literature that there is no "cure" for valvular heart disease, we simply replace it with prosthetic valve disease. The advantage of that replacement is that (depending on if you recieve tissue or mechanical prosthetic) you are either managing INR or preparing for the likelyhood of a future valve surgery. The younger you are the more likely that such a future valve surgery is a certainty.
PM me if you want a contact of a fellow from here (this forum) who is a fellow Norwegian (living in Oslo I believe) who may or may not be a good contact for you to bounce ideas off.
Lastly, let me give you my page on the management of ACT that I've written which may help you consider your ACT management in a more "amenable to real life" way.
http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
there is more on INR on my blog, but you can find that easily from the topic list on the left if you wish.
Best Wishes (from an ex-neighbor)
Last edited:
Superman
Well-known member
Warfarin directly resulted in a unplanned pregnancy. Number 5 was not intended.
But I had to reschedule a certain procedure due to being above or our target of under 2 INR. Dr was booked out a month.
I guess my youngest was supposed to be here. Wouldn’t change a thing now.
But I had to reschedule a certain procedure due to being above or our target of under 2 INR. Dr was booked out a month.
I guess my youngest was supposed to be here. Wouldn’t change a thing now.
pellicle
Professional Dingbat, Guru and Merkintologist
something makes me think there is more to this story than meets the eye ;-)
Agian
Well-known member
Ivareri, I would intentionally go to a quiet classical concert to make it a head turning event... LOL "I've had a heart operation you selfish bastards."
carolinemc
Well-known member
Are they keeping an eye on the baby, cause when on warafarin(Coumadin) It is highly recommended not to get pregnant, due to high risk chance of major birth defects. I am surprised they did not get you on Birth Control.
Superman
Well-known member
Since I’m Superman, there have been no issues with Warfarin and pregnancy. My wife handled the hard work. No birth control available for me save for the aforementioned procedure that I had to reschedule.
I’ve been on Warfarin since I was 17. All five of my kids were conceived while I was medicated.
carolinemc
Well-known member
So you must be a male. for a female would have been advised from becoming pregnant while on Warafrin. So it may be different for the male persuasion, LMAO! But good luck on the procedure.Since I’m Superman, there have been no issues with Warfarin and pregnancy. My wife handled the hard work. No birth control available for me save for the aforementioned procedure that I had to reschedule.
I’ve been on Warfarin since I was 17. All five of my kids were conceived while I was medicated.
Hello! I just joined this site but I may be of some help. I’m currently 19 (almost 20) and when I was 17 I had my aortic valve replaced with an On-x mechanical heart valve along with an aortic stem graft due to my aorta enlarging throughout my life. I had the chance to go for a bovine valve but I couldn’t ever imagine going back into surgery so I chose the mechanical valve. It’s not as bad as people make it seem. Blood thinners are not really an issue. I was told that every cut will bleed bad and I can hardly tell a difference from before blood thinner and after blood thinners. I can understand that sports are a big limitation with this kind of valve but to be honest, a long healthy life vs. sports is a choice he has to make. I don’t think anyone should risk their life over a sport. The one downside that could make or break having this valve is the clicking sound. At all times I hear a mild clicking which is almost like a watch or a clock. Other people can hear it if their about 5 feet away from me and it can be awkward in social situations such as work or classrooms. I finished my second year of college and I still have two more years. Then I have 4 years of medical school after that so I taught myself to accept the sound. After you realize that it’s keeping you alive and you may never have to go back into surgery you sort of appreciate it. Lots of people think it’s unique and I’m blessed to have one of the best heart valves out there. I would never chose a flesh valve after how my experience with my mechanical valve has been. I love it!!!
Hi SethPen. Welcome to the site and I agree with your rationale. The fewer times you have OHS surgery, the better.
My 20 yr old son had to go through the same procedure two years back (St. Jude Mechanical Valve with aortic stem graft ). I am always concerned about his lifespan or rather how much he can pull along before another OHS is needed. I wish and pray that he doesn't need one. It feels good to see a positive message from dick0236.
My son's valve doesn't make much noise. So that is one good thing.
My son's valve doesn't make much noise. So that is one good thing.
I've enjoyed doing the 'I have a heart valve' moments at press conferences or other places where people turn around to find the person 'wearing the cheap watch.' Once, I made a particularly annoying journalist slink into his chair when I told him why I was ticking. (What's wrong with a mechanical watch, anyway?).
I've gotten used to the ticking -- I have to tell myself to listen to it, when I really want to hear it. (I've had mine for nearly 28 years).
Anticoagulants shouldn't have a great impact on your life. We've had people on this forum who've been very active physically, even though they were on warfarin.
Recently, for me, at least, I HAVE had some negative events that possibly relate to anticoagulation: I've had popliteal (aka Bakers) cysts - blood pools behind the knee. This has been temporarily disabling. I've torn or overstrained a muscle in the other leg, and a lot of painful bruising limited my mobility. And now, oddly enough, I've got some kind of bleed in my right elbow joint. It restricts my movement - painful to fully extend my arm, and sometimes not possible to touch my nose with my hand. Strange. And all this with an INR of 3.2. For the past few months, I haven't gotten much of a break from this kind of thing. I got blood drained from my elbow this morning - it feels like it's coming back. Of course, this bleeding may be related to something else going on. I went 27 years without any INR related issues (aside from a TIA resulting from trusting an InRatio meter too much).
For most of us, ACT isn't that big a deal. You might bleed a little longer than you would if you weren't on warfarin, you may get more bruises, but in most cases INR below 4 or so is mostly a non-issue.
I've gotten used to the ticking -- I have to tell myself to listen to it, when I really want to hear it. (I've had mine for nearly 28 years).
Anticoagulants shouldn't have a great impact on your life. We've had people on this forum who've been very active physically, even though they were on warfarin.
Recently, for me, at least, I HAVE had some negative events that possibly relate to anticoagulation: I've had popliteal (aka Bakers) cysts - blood pools behind the knee. This has been temporarily disabling. I've torn or overstrained a muscle in the other leg, and a lot of painful bruising limited my mobility. And now, oddly enough, I've got some kind of bleed in my right elbow joint. It restricts my movement - painful to fully extend my arm, and sometimes not possible to touch my nose with my hand. Strange. And all this with an INR of 3.2. For the past few months, I haven't gotten much of a break from this kind of thing. I got blood drained from my elbow this morning - it feels like it's coming back. Of course, this bleeding may be related to something else going on. I went 27 years without any INR related issues (aside from a TIA resulting from trusting an InRatio meter too much).
For most of us, ACT isn't that big a deal. You might bleed a little longer than you would if you weren't on warfarin, you may get more bruises, but in most cases INR below 4 or so is mostly a non-issue.
carolinemc
Well-known member
@SethPen So glad you came here. We have tons of personal experiences and advice we can share with you. You may be young, but you are doing great. I have a St. Judes' leaflet aortic valve and on warafarin. Yeah, blood thinners are not bad and it is best to do the mechanical to try to prevent a surgery for some time. You are in good company here, for you have fellow Onyx valvers here. Come on anytime and ask questions or share experiences. Hugs for today.
