I will have my aortic valve replaced with a mechanical valve next week

[GreenGiant91]

Hi all,

So my background is congenital heart disease I was born with a Bicuspid aortic heart valve, VSD and needed a Coarctation of the aorta repair to save my life at 11 days old. I'm 32 years old now. Living in the UK.

I became unwell this year around May time before finally being diagnosed with endocarditis in August, I spent 7 weeks in hospital getting IV antibiotics for this. The final scans of the heart at the end of September seemed okay allowing me to be discharged with close follow up appointments with my doctor. However at the end of October part of the dead vegetation came off the heart valve causing a small hole in the Aortic valve this caused me to have a TIA (lost sight in left eye for a few minutes) I went straight to hospital. After a few days of tests it was decided the best treatment for me would be a mechanical heart valve and they will close the VSD while they're at it.

I found out today the surgery will be next Thursday so it's starting to feel very real now and scary. I will be honest and say this is the most scared I have ever been in my life and still can't believe this is happening. I'm trying to be positive but I'm struggling with it all.
I have extreme anxiety about the surgery itself, as if it won't successful, dying and other complications that may disable me. I know these fears all come from the unknown and overthinking but its hard to relax. I also fear my life with the valve will be one that will hold me back from traveling, being active, enjoy food and having a long happy life. I start to worry about needing a new valve down the line too.

I have been reading this forum for the past few days and its been very helpful in easing some of my fears but now it's getting real with the date my anxiety has gone up. My hands started to shake uncontrollably when my doctor told me today.



I just hope I can have a normal healthy life after this. I guess I hope to hear everyone's experiences and maybe it can help me relax more and embrace this next chapter in life.

 

[pellicle]

Hi and welcome

I just hope I can have a normal healthy life after this. I guess I hope to hear everyone's experiences and maybe it can help me relax more and embrace this next chapter in life.

I hope you actually search here for all of the hundreds of exactly such stories, just because they wrote them a year or more ago doesn't make them less true

I had my most recent OHS back in 2011, new mechanical valve and an aortic graft to replace the aortic artery which had an aneurysm.

I've had 3 OHS in my life and between each one I've lived a "normal life"

Here's an old post (with broken images probably because there was a server migration).

I recommend that you also get across this topic in time too
https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
I have a lot on my blog directed at helping people who need to manage warfarin and INR, and the whole list is here:

https://cjeastwd.blogspot.com/search/label/INR
I believe its a good resource.

Some post OHS stories:







I had my first OHS at 10 and now I'm old and a bit broken at 59

Don't forget

 

[dick0236]

I just hope I can have a normal healthy life after this. I guess I hope to hear everyone's experiences and maybe it can help me relax more and embrace this next chapter in life.

I am sure you will have a long and normal life. We all have thoughts like yours when we approach this surgery. I was about your age (31) when I received my one and only mechanical valve......I am now 87. My valve has not interfered with my life and lifestyle......altho I did think twice (most of the time) about "pushing the limits".

Warfarin (anti-coagulant) management is the only day-to-day "must do".
1. Take the pill as prescribed......get a seven day pill-box.
2. Test every week or two and self-test if you can......it's a ten minute finger stick similar to what diabetics do.

 

[3mm]

I also had Endocarditis that damaged my heart. Lots of antibiotics for many weeks, and eventually (Sep 14th) open heart surgery. You can do this! Each day focus on what is important now. From my background in law enforcement, and engineering, I think of this as the OODA loop: "Observe–orient–decide–act cycle". Do you know how to prepare for your hospitalization and surgery? Focus on that now. Then consider your support mechanisms for when you leave the hospital.

It is OK to be scared.... for a couple minutes, as you "observe" what may happen to you. Then "orient" yourself toward a specific problem. "decide" on a plan to handle that problem, and then "act" to implement that plan.

Please ask if you have more questions!

 

[Chuck C]

Welcome to the forum GreenGiant!

And welcome to our special club, the one that no one wants to join. But, happy that you found us and hope that reading the many posts here can help you

Like you, I was born BAV and I have a mechanical valve, as you soon will. I didn't find out about my BAV until age 52, when a physical for a boxing match detected a heart murmur. Had my surgery at age 53, which was about 32 months ago. Hard to believe that I'm approaching my 3 year anniversary, but time flies when you are just doing life- and, as you will see, you will get past this and will be living a normal life before you know it.

Some points to be aware of:

-You will get through this and we will see you on the other side. This is a major surgery but it is also very common and the survival rate is excellent, especially for a young person as yourself.

-You will live a normal life after valve surgery. You can be as active as you want. There are a few common sense things that you won't be able to do on warfarin, like machete juggling and MMA fighting, but you will be able to do the vast majority of physical activities that you choose. I do jiu jitsu, run, bike, and go on vigorous hikes. I even started boxing again, but do so sensibly- no sparring rounds with Tyson Fury.

I also fear my life with the valve will be one that will hold me back from traveling, being active, enjoy food and having a long happy life.

You will be able to travel all you want, be active and enjoy almost any foods you want. There are a few exceptions, such as grapefruit and natto, but nobody likes those anyway (except @dick0236 for some reason likes grapefruit )

Regarding happiness, there is no reason why you can't live a long happy life. Look at Dick- he's 87 years old and had his valve surgery at your age. Please continue reading the threads here. You will see that life is very normal after valve surgery. We travel, are active and eat what we want. I can't promise that you will be happy after your surgery, but I can promise that being happy is within your control, just as it is for everyone, whether valve patient or not.

Before you know it, you will be waking up in your recovery room and telling the forum all about your adventures in the hospital during your recovery.

You've got this!

 

[GreenGiant91]

Hi and welcome


I hope you actually search here for all of the hundreds of exactly such stories, just because they wrote them a year or more ago doesn't make them less true

I had my most recent OHS back in 2011, new mechanical valve and an aortic graft to replace the aortic artery which had an aneurysm.

I've had 3 OHS in my life and between each one I've lived a "normal life"

Here's an old post (with broken images probably because there was a server migration).

I recommend that you also get across this topic in time too
https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
I have a lot on my blog directed at helping people who need to manage warfarin and INR, and the whole list is here:

https://cjeastwd.blogspot.com/search/label/INR
I believe its a good resource.

Some post OHS stories:







I had my first OHS at 10 and now I'm old and a bit broken at 59

Don't forget

Hi,

Thanks for the reply. I have read lots of positive stories on here with people living very normal active lives which has helped decrease my anxiety for sure. I love reading people travelling and working out. I would suffer from bad anxiety and this year has been a year from hell with being unwell since April.

I will read the links you have sent me on warfarin. I am nervous about the warfarin as it I fear I will be obsessing over it and scared to try new foods or side effects. But after reading this forum it seems if you stay on top of the lNR levels its not so bad and all the horror stories seem to be from people who don't manage their levels correctly (or not at all).

Thanks again for the message.

 

[GreenGiant91]

I am sure you will have a long and normal life. We all have thoughts like yours when we approach this surgery. I was about your age (31) when I received my one and only mechanical valve......I am now 87. My valve has not interfered with my life and lifestyle......altho I did think twice (most of the time) about "pushing the limits".

Warfarin (anti-coagulant) management is the only day-to-day "must do".
1. Take the pill as prescribed......get a seven day pill-box.
2. Test every week or two and self-test if you can......it's a ten minute finger stick similar to what diabetics do.

Hi Dick,

That is amazing you have had the mechanical valve for that long!!

The warfarin seems scary to me as its an unknown so I need to educate myself more around it and try not to obsess over it everyday.

Thanks for the reply

 

[GreenGiant91]

I also had Endocarditis that damaged my heart. Lots of antibiotics for many weeks, and eventually (Sep 14th) open heart surgery. You can do this! Each day focus on what is important now. From my background in law enforcement, and engineering, I think of this as the OODA loop: "Observe–orient–decide–act cycle". Do you know how to prepare for your hospitalization and surgery? Focus on that now. Then consider your support mechanisms for when you leave the hospital.

It is OK to be scared.... for a couple minutes, as you "observe" what may happen to you. Then "orient" yourself toward a specific problem. "decide" on a plan to handle that problem, and then "act" to implement that plan.

Please ask if you have more questions!

How long were you unwell for before you got the endocarditis diagnosed? I had a nightmare with my family doctor to take my symptoms seriously as he dismissed me with having long covid even though some of my blood tests kept coming back with high CRP levels and I was describing classic endocarditis symptoms to him. I went to him 4 times between May and Early August. I asked him in June to send me to cardiology team as I felt at the time it was something around my heart due to feeling worse with any exercise such as a short walk or a round of golf. I sometimes think what if I had been treated sooner would I avoid having this surgery.

Would you be on antibiotics for going to the dentist? Did the doctor mention anything around getting endocarditis on the new valve?

thanks for the reply

 

[GreenGiant91]

Welcome to the forum GreenGiant!

And welcome to our special club, the one that no one wants to join. But, happy that you found us and hope that reading the many posts here can help you

Like you, I was born BAV and I have a mechanical valve, as you soon will. I didn't find out about my BAV until age 52, when a physical for a boxing match detected a heart murmur. Had my surgery at age 53, which was about 32 months ago. Hard to believe that I'm approaching my 3 year anniversary, but time flies when you are just doing life- and, as you will see, you will get past this and will be living a normal life before you know it.

Some points to be aware of:

-You will get through this and we will see you on the other side. This is a major surgery but it is also very common and the survival rate is excellent, especially for a young person as yourself.

-You will live a normal life after valve surgery. You can be as active as you want. There are a few common sense things that you won't be able to do on warfarin, like machete juggling and MMA fighting, but you will be able to do the vast majority of physical activities that you choose. I do jiu jitsu, run, bike, and go on vigorous hikes. I even started boxing again, but do so sensibly- no sparring rounds with Tyson Fury.


You will be able to travel all you want, be active and enjoy almost any foods you want. There are a few exceptions, such as grapefruit and natto, but nobody likes those anyway (except @dick0236 for some reason likes grapefruit )

Regarding happiness, there is no reason why you can't live a long happy life. Look at Dick- he's 87 years old and had his valve surgery at your age. Please continue reading the threads here. You will see that life is very normal after valve surgery. We travel, are active and eat what we want. I can't promise that you will be happy after your surgery, but I can promise that being happy is within your control, just as it is for everyone, whether valve patient or not.

Before you know it, you will be waking up in your recovery room and telling the forum all about your adventures in the hospital during your recovery.

You've got this!

Hi Chuck,

Thanks for the reply. I am so glad this forum exists as my anxiety when I was first told I would need surgery was off the scale and I could only see blackness in front of me. I literally couldn't see a future. After a few days of reading posts on here it has helped reduce my anxiety but I guess I still have the fear of the unknown.

The doctors here seem positive I will make a quick recover due to my age and being fairly active. I've been in hospital since october 29th and I still walk every day about the wards and corridors to keep fit before the surgery. I would hike, play golf, go to the gym and run normally so I was terrified I wouldn't be able to do any of this after or be very scared and anxious to do them. Reading posts on here has helped me realised my fears are based on nothing.

I will make sure to update post surgery once the pain meds ease up or no one will understand what i'm saying

 

[PhillyJohn]

I’m a week behind you - I’m 41 with a BAV (but apparently no other complications), and am having my mechanical valve installed on Nov 29. I can honestly say if not for this forum, I would be frankly freaking out, but reading all the stories here has calmed me down considerably.

If you’d like to exchange information as we go through the recovery journey at the same time, I’d be very open to that!

 

[GreenGiant91]

I’m a week behind you - I’m 41 with a BAV (but apparently no other complications), and am having my mechanical valve installed on Nov 29. I can honestly say if not for this forum, I would be frankly freaking out, but reading all the stories here has calmed me down considerably.

If you’d like to exchange information as we go through the recovery journey at the same time, I’d be very open to that!

wow you quite literally one week behind me on the road to our new heart valves! This forum has been great for calming me down too and being more positive than I was just a couple of weeks ago.

100% I'm happy to message each other about our journey! Feel free to send me a private message on here

 

[DByrner]

Hi all,

So my background is congenital heart disease I was born with a Bicuspid aortic heart valve, VSD and needed a Coarctation of the aorta repair to save my life at 11 days old. I'm 32 years old now. Living in the UK.

I became unwell this year around May time before finally being diagnosed with endocarditis in August, I spent 7 weeks in hospital getting IV antibiotics for this. The final scans of the heart at the end of September seemed okay allowing me to be discharged with close follow up appointments with my doctor. However at the end of October part of the dead vegetation came off the heart valve causing a small hole in the Aortic valve this caused me to have a TIA (lost sight in left eye for a few minutes) I went straight to hospital. After a few days of tests it was decided the best treatment for me would be a mechanical heart valve and they will close the VSD while they're at it.

I found out today the surgery will be next Thursday so it's starting to feel very real now and scary. I will be honest and say this is the most scared I have ever been in my life and still can't believe this is happening. I'm trying to be positive but I'm struggling with it all.
I have extreme anxiety about the surgery itself, as if it won't successful, dying and other complications that may disable me. I know these fears all come from the unknown and overthinking but its hard to relax. I also fear my life with the valve will be one that will hold me back from traveling, being active, enjoy food and having a long happy life. I start to worry about needing a new valve down the line too.

I have been reading this forum for the past few days and its been very helpful in easing some of my fears but now it's getting real with the date my anxiety has gone up. My hands started to shake uncontrollably when my doctor told me today.



I just hope I can have a normal healthy life after this. I guess I hope to hear everyone's experiences and maybe it can help me relax more and embrace this next chapter in life.

Hi my friend

Sorry to hear you are going through this difficult time.

I’m 43 and had my 3rd OHS 7 weeks ago today. It was a mechanical to match the mechanical I now have on my aortic. I really recognize the fears you have as you are quite similar to mine. I actually posted a message on this forum expressing my agony at the time.

As explained to me by my doctors the mortality rate is heavily weighed on your side. I think there was a 1% chance I wouldn’t get through it. The op is a biggy , no point in saying it’s not, but after the first week you’ll make remarkable strides. You’ll be doing laps of wards etc. I’ve been buzzing about with my 2 year old all day, had a couple of whiskeys last night and will start running again soon so you will get better. The warifin as an adjustment but as meds go it’s not the worst. You just need to manage it yourself, but in my opinion do that in your own time. I went on it in 2020 and just now I’m sussing it out now.

Big surgery, so don’t beat yourself up about being worried. I worried a lot and would again if I had to go again… but rationy and 7 weeks on, you’ll be fine and you will get your life back…faster than you think.

 

[Bionic Orange]

The doctors here seem positive I will make a quick recover due to my age and being fairly active.

You are less than half my age when I had my SAVR done 3 months ago. My surgeon said I would also make a quick recovery due to being fairly active and I have made a quick recovery. You have youth on your side so you will do fantastic!

Like Chuck said, the only thing I don't eat anymore while taking Warfarin, is natto (and I'm proud to admit that I love it ).

 

[GreenGiant91]

Hi my friend

Sorry to hear you are going through this difficult time.

I’m 43 and had my 3rd OHS 7 weeks ago today. It was a mechanical to match the mechanical I now have on my aortic. I really recognize the fears you have as you are quite similar to mine. I actually posted a message on this forum expressing my agony at the time.

As explained to me by my doctors the mortality rate is heavily weighed on your side. I think there was a 1% chance I wouldn’t get through it. The op is a biggy , no point in saying it’s not, but after the first week you’ll make remarkable strides. You’ll be doing laps of wards etc. I’ve been buzzing about with my 2 year old all day, had a couple of whiskeys last night and will start running again soon so you will get better. The warifin as an adjustment but as meds go it’s not the worst. You just need to manage it yourself, but in my opinion do that in your own time. I went on it in 2020 and just now I’m sussing it out now.

Big surgery, so don’t beat yourself up about being worried. I worried a lot and would again if I had to go again… but rationy and 7 weeks on, you’ll be fine and you will get your life back…faster than you think.

Hi,

Thanks for the message! I see you're from Dublin? I'm up in Belfast so not too far away!

Glad to hear you're keeping good and chasing after your 2 year old! Interesting you still drink on warfarin? I was thought my drinking days were now behind me and was thanking the Guinness gods they now do 0% Guinness!! Do you test your INR at home or at your GPs?

 

[GreenGiant91]

You are less than half my age when I had my SAVR done 3 months ago. My surgeon said I would also make a quick recovery due to being fairly active and I have made a quick recovery. You have youth on your side so you will do fantastic!

Like Chuck said, the only thing I don't eat anymore while taking Warfarin, is natto (and I'm proud to admit that I love it ).

Hi,

Thanks for the reply. I will take it as a good sign for me I needed to google what natto is . How do you feel 3 months on?

 

[dick0236]

Interesting you still drink on warfarin? I was thought my drinking days were now behind me and was thanking the Guinness gods they now do 0% Guinness!!

There is no problem with drinking alcohol......responsibly, after your surgery. Getting "falling down drunk" will cause you problems.....on warfarin or not.

When I had the surgery in 1967 there were no modern diuretics to help remove water from my body post-op. I was actually prescribed a 12 oz. can of beer every evening while I was in the hospital. As we all know, beer is a pretty good diuretic.

 

[Chuck C]

There is no problem with drinking alcohol......responsibly, after your surgery.

This has certainly been the case for me. A few drinks does not seem to move my INR more than about 0.1 or so, if at all.

Getting "falling down drunk" will cause you problems.....on warfarin or not.

Agreed.

Not a good idea to drink so much that you fall down and hit your head.

Don't drink so much that you think it's a good idea to get in a fight with the biggest guy in the bar (or even the smallest guy lol)

Don't drink so much that you think you can relive your teen days and do stunts like these or you might end up with a Darwin award, whether on warfarin or not:

 

[LondonAndy]

Welcome from another Brit! and I agree: open heart surgery is a big deal, so it would be surprising if anyone is not anxious before it happens! Anticipation is the worst thing, and difficult for many to deal with. Personally, having a mechanical valve doesn't affect what I do at all. Still drink (in moderation), eat what I always used to, and in random amounts, and go on holidays etc.

Focus on getting ready for it, and the recovery period afterwards. Top tips:

1. Take ear plugs and an eye mask! My valve was done as an emergency, and I discovered later that if it had been a planned procedure they would have issued some ear plugs by post to me. But no. I remain amazed at how little respect most medical staff have for sleep! From early morning cleaning to other patients being admitted or discharged, there is noise and bright light most of the time. You may already know this from previous time in hospital!
2. Don't bother taking much clothing. You'll mostly use hospital pyjamas and gowns, and their laundry processes are not really geared for private clothing - stuff will just get lost.
3. Remember phone charger, toothbrush charger if you use an electric one, and a book or kindle-type device for lots of time waiting around, though you probably won't feel like reading much after the op for a while. It's difficult to concentrate as the body heals.
4. Get a CoaguChek meter. Loads of threads about them on here. An easy way to test your INR at home or wherever you are, to manage your Warfarin. And it means you can test more frequently than most clinics end up doing. (Not unusual to be every 6 - 8 weeks once your INR settles down, but with a meter you can test weekly). Read this for more info and why it is so important. Not sure what it is like in Northern Ireland, but I had to buy my own meter (£300) and then the test strips etc are on prescription. (You don't need to pay VAT (sales tax) - we're exempt for medical reasons).
5. Prepare for coming home. Don't share towels to avoid risk of infection. Wash after only 2 or 3 uses, at a high temperature. Have you got a recliner, or big triangular pillow thingy, to help sleep on your back and make it easier to get in and out of bed? Again, lots of threads about these issues.
6. Don't overdo it! Give your body the time it needs to recover and get back to normal. Remember you won't be able to lift much weight whilst the chest heals.

 

[GreenGiant91]

This has certainly been the case for me. A few drinks does not seem to move my INR more than about 0.1 or so, if at all.


Agreed.

Not a good idea to drink so much that you fall down and hit your head.

Don't drink so much that you think it's a good idea to get in a fight with the biggest guy in the bar (or even the smallest guy lol)

Don't drink so much that you think you can relive your teen days and do stunts like these or you might end up with a Darwin award, whether on warfarin or not:

I wouldn't be a big drinker in the sense of drinking too much in one go and getting black out drunk, I do enjoy a few pints here and there especially on holidays or at a concert. I always thought warfarin meant no to drinking full stop but I imagine there's a lot of misconceptions about warfarin.

I will try my best not to go flying down any hills on skateboards...big emphasis on the TRY.

 

[pellicle]

I always thought warfarin meant no to drinking full stop but I imagine there's a lot of misconceptions about warfarin.

just a bit, promoted by people who promote to everyone else that you shouldn't drink at all ... whoever you are.

I will try my best not to go flying down any hills on skateboards..

but if you do:

(I swear in the slow mo you can hear someone say "you should be dead" amid the repetition of "I love helmets" )