Facing a 2nd operation

[pekster11]

Hi
well as you know if you've read any of my posts and clicked through to read about me I've had a career of 3 OHS, starting at 10 and my last one was at about 48. I had a repair, a homograft and finally a mechanical; each spaced about 15 to 20 years apart.

The reality of the world when I was 28 was there there was no Point of Care INR monitoring (as there is today) which would have meant that if I'd been advised towards a mechanical valve back then I'd have been facing: being chained to an INR clinic and weekly or so vein blood draws. I know that would have been bad.

Equally I knew when considering my 3rd OHS at 48 that I didn't want to have a 4th because while it would be better than death from avoiding a failing tissue prosthesis and death from SVD, no operation needed would be better. So picking a mechanical valve was pretty much a no brainer to my frame of reference.

I say, to younger people here time and time again that compared to the already old (meaning those over 60) the actuality of our choices is quite different. I'm actually nearing 60 but my valve has now done 12 years of operation and of course shows no sign of failing.

Reoperation in itself is not the problem; the problem is the cumulative interior damage created by the inevitable scar tissue and the stuff left lying around and the increased risks of infections (contributed to by the scar tissue).

If you met me you'd probably say "wow, you don't look like someone who's had 3 heart sugeries. In part that's because I had really good surgical care and really paid attention to maintaining my health.

This is a site founded upon the concept of patients who are sharing what they have experienced; so it should seem strange when someone who had their first operation at over 60 who has never been on warfarin and how doesn't manage it in any way (doesn't even self test) will tell you about how bad that option is; while never having had a reoperation and crowing about how my valve is still good at 9 years. As if 9 years is a long or good amount for measuring the rest of your life by.

The following is predicated on the fact that you are not "contra-indicated" for warfarin (which is rare, but exists).

My advice to you is this: you've already kicked the can down the road and found that SVD is actually real and the statistics do indeed apply to you. You need to look past the surgery into the next 20 years. Sure if you pick a mechanical valve you'll be managing your INR for the rest of your life. If you don't pick a mechanical valve you will most assuredly be going to testing again looking for SVD and so basically (if you recall the process that led to your current situation) you'll be setting yourself up for that again.

Is that the future you want?

I recommend you to read my blog post here about choices (make sure you don't miss Dr Schaffs old presentation here)

and here about the facts of INR management.

SVD is also increasingly linked to Lp(a) as I understand it, so if you have higher Lp(a) then choosing another bioprosthesis would be like expecting something different by doing the same thing as last time.

Lastly there is no definitive cure for valvular heart disease, we only exchange it for prosthetic valve disease; of which there are two main branches. One is managed by future surgeries the other is managed by you managing your INR.

Let me show you some glimpses of my life after mechanical on self management of INR

Going to the local micro brewery at Mt Alford


Explaining life in Finland to my Australian mates

(because I lived in Finland on and off both before and after surgery)

A common trip on my eScooter to hike Queen Mary falls

(this time followed by my mate on his bicycle to record it, I do this trip a couple of times a week in summer)

So in my view, learn about the actual outcomes and make you choices on the actual data (not just a perception of them)

Lastly I often hear "but I'm so active, I can't choose a mechanical", are you more active than Veronika?

https://www.newsweek.com/my-turn-climbing-everest-bionic-heart-99749
because the above "...I'm so active..." is based on a presumption that's simply false.

Whatever you choose to do, I hope you have a typical event free surgery and a smooth recovery.

Best Wishes

Hey, I was thinking of you when I watched this video recently

 

[Chuck C]

Hey, I was thinking of you when I watched this video recently

Yep, that's Pellicle! But, high on coffee, not meth

 

[KyleR]

Just a follow up. I met with the surgeon a few weeks ago and there was some discrepancy with the pressure gradient numbers between my most recent echo and TEE, so he ordered a cath diagnostic test to get the most accurate reading. The cath test came back with a mean pressure gradient of around 40 so apparently I am now officially in the severe stenosis range. Since I am asymptomatic and do not have any other issues both my surgeon and cardiologist are recommending a "watchful wait" with another echo scheduled in 6 months. If symptoms develop sooner than that then that would change the equation but as of now neither seems to be in a rush to jump into surgery. Personally I'm ok with that as we have a 10 month old at home and this gives my wife and I (hopefully) some time to plan things out.

My surgeon did of course suggest a mechanical valve this time around given my age and prior surgery, and I am in agreement with that. With my original surgery he had to enlarge my root so he said this time around he would need to replace both the valve and part of the aorta. While I guess this does add to the complexity of the surgery it does alleviate my concerns about a 3rd operation down the road due to an aortic aneurysm. He did say that if a 3rd operation is ever needed though then it would be tricky with the graft in place, but I'm not sure exactly what he meant by that. I don't want to worry about a 3rd operation before I've even had my 2nd, and with a mechanical valve I'm certainly hoping this will be my last, but can anyone elaborate on why the graft may cause issues down the road with another operation? I thought I had read here before that some members have had grafts replaced but I could be mistaken.

 

[pellicle]

Morning

.... With my original surgery he had to enlarge my root so he said this time around he would need to replace both the valve and part of the aorta. While I guess this does add to the complexity of the surgery it does alleviate my concerns about a 3rd operation down the road due to an aortic aneurysm.

surprisingly little ...

He did say that if a 3rd operation is ever needed though then it would be tricky with the graft in place, but I'm not sure exactly what he meant by that.

I'd have asked, but he may be meaning that any future surgery will be about aneurysm expanding further up the aortic artery. If this gets closer to the arch (like mine) then it can be difficult because there is a lot of vascular surgery in putting on all those arteries.

... I thought I had read here before that some members have had grafts replaced but I could be mistaken.

yes, it happens, but it is of course less straight forward. Like driving on an empty road vs driving in traffic.

Best Wishes with the surgery and I hope the recovery is uneventful.

 

[tom in MO]

Just a follow up. I met with the surgeon a few weeks ago and there was some discrepancy with the pressure gradient numbers between my most recent echo and TEE, so he ordered a cath diagnostic test to get the most accurate reading. The cath test came back with a mean pressure gradient of around 40 so apparently I am now officially in the severe stenosis range. Since I am asymptomatic and do not have any other issues both my surgeon and cardiologist are recommending a "watchful wait" with another echo scheduled in 6 months. If symptoms develop sooner than that then that would change the equation but as of now neither seems to be in a rush to jump into surgery. Personally I'm ok with that as we have a 10 month old at home and this gives my wife and I (hopefully) some time to plan things out.

My surgeon did of course suggest a mechanical valve this time around given my age and prior surgery, and I am in agreement with that. With my original surgery he had to enlarge my root so he said this time around he would need to replace both the valve and part of the aorta. While I guess this does add to the complexity of the surgery it does alleviate my concerns about a 3rd operation down the road due to an aortic aneurysm. He did say that if a 3rd operation is ever needed though then it would be tricky with the graft in place, but I'm not sure exactly what he meant by that. I don't want to worry about a 3rd operation before I've even had my 2nd, and with a mechanical valve I'm certainly hoping this will be my last, but can anyone elaborate on why the graft may cause issues down the road with another operation? I thought I had read here before that some members have had grafts replaced but I could be mistaken.

Per your watchful waiting, make sure you know the symptoms that requires you to get immediate treatment. For your 6 month echos, make sure you get follow-up reports, sometimes doctors forget to check results and/or call.

When it comes to a 3rd operation, from what I've picked up, the more work done in and around a valve makes additional work more complex for several reasons that are individual in nature (e.g. scar tissue) and may never apply to you. We all heal in different ways and had different work do. You are wise to "don't worry about a 3rd operation before it's even needed."

 

[KyleR]

Well, so much for the "watchful waiting". Surgery is scheduled for June 16th. Not looking forward to the operation and immediate aftermath, but definitely looking forward to getting it behind me.

 

[Seaton]

All the best for the 16th.
And onwards to a good and steady recovery.

 

[Peej]

Good luck Kyle. I'm down the road a bit. I opted to have my surgery done at Cleveland Clinic though I went the mechanical route in hopes of being one and done. No regrets on choosing CC but also was going to chime in to say I'm sure you'll be fine staying local. Traveling to CC can take a bit more time to get the ball rolling.

 

[dick0236]

Good luck Kyle.

 

[Survived03]

Good luck Kyle.

 

[ottagal]

Best wishes for a successful surgery and smooth recovery. Take care,

 

[tom in MO]

Well, so much for the "watchful waiting". Surgery is scheduled for June 16th. Not looking forward to the operation and immediate aftermath, but definitely looking forward to getting it behind me.

Best of luck.

 

[Nik B]

Hey lovely people I need your help and life experience tips

In May 2022 I had ascending aorta surgery and it was a complete hell. I've been 20 days at the hospital (high temperature, fluids in the lungs as well in the heart, two additional procedures to extract it), then 7 days home and another 10 days at the hospital. Needless to say that I was both physically and psychologically broken.

Recovery was so slow that I doubted I will ever recover. Immediately on the first check up doctor noticed "trivial" aortic regurgitation. But they said there's nothing to worry about. And a month ago in May 2023, exactly on my 1 year anniversary they said I have severe aortic regurgitation 3-4+ and small mitral and tricuspid regurgitations 1+ but surgery is required for aortic regurgitation in 90 days, which is in August. But I don't have the name of the surgeon or the exact date and time of surgery. Yes, that's correct.

I live on the 4th floor and can easily go up the stairs every day. My only symptom is occasional feeling of lightheadedness and feeling that I might faint. My blood pressure is around 110/52.

Since I'm from Bosnia I don't have much options - Belgrade is the only available heart centre in neighbouring Serbia where I can have surgery.

Nobody talked to me and they won't because that's how they do it. And if you don't have connections there's no way you can reach any of the surgeons to talk with them. That's reality of life in this part of the world.

Ever since they told me that I will have to go through this torture again I am paralyzed. From the moment I wake up until the moment I fall asleep I'm just thinking about what decision to make and reliving the trauma of my past surgery.

I have Marfan syndrome and I feel like my life is rapidly collapsing in the past 4 years. I will very likely have another eye surgery (my 5th for now) in the near future and potentially being on Warfarin will make it more risky and complicated. I also have scoliosis which makes everything even more disgusting.

What to do?? To reject the surgery and try to live the remaining 1-2 years or to get hooked on mechanical valve and Warfarin for life.
Ticking and Warfarin are terrifying to me. My quality of life has already been on decline and with mechanical valve and warfarin I think I would actually get diagnosed with clinical depression.

There's no guarantee that even if I accept the surgery I won't be in the same position in 1,2 or 3 years with another valve severely leaking. The prognosis for Marfan syndrom is pretty bleak - frequent heart surgeries are very common.
Is that life??

So many questions on my mind... I can't even remember them.

What is like to go to the dentist while on Warfarin?
What if I for some reason only eat once on some day, will that disrupt my INR?
Can you listen to music with the ticking?
Can you eat cheese, milk, pork, pizza, beef, eggs, beans, rice on Warfarin? What about apples, bananas, ranges, cappucino?
Do you regret having mechanical valve??

Please share your experience.

I'm 31 and completely lost right now. I go through so much emotions from anger, denial to overwhelming sensation of loneliness.
I don't know what to do and I am so tired of life...

 

[Emmapenny]

Hi Nik - I am sorry you are feeling this way.

Try not to fear mechanical valves or warfarin - it may seem like too much to cope with but in my experience (with my son) once everything settles down after surgery it isn't too much to deal with and life carries on just with some minor adjustments.

You can eat all those things you have mentioned and many more - diet is not a big part of warfarin management.

There are people on here who will be happy to offer you much more help and advice. Everyone has a different experience and I wouldn't want to compare ours with yours but I didn't want to read your message and not to try and offer some words of comfort.

 

[brachikaa]

Hey lovely people I need your help and life experience tips

In May 2022 I had ascending aorta surgery and it was a complete hell. I've been 20 days at the hospital (high temperature, fluids in the lungs as well in the heart, two additional procedures to extract it), then 7 days home and another 10 days at the hospital. Needless to say that I was both physically and psychologically broken.

Recovery was so slow that I doubted I will ever recover. Immediately on the first check up doctor noticed "trivial" aortic regurgitation. But they said there's nothing to worry about. And a month ago in May 2023, exactly on my 1 year anniversary they said I have severe aortic regurgitation 3-4+ and small mitral and tricuspid regurgitations 1+ but surgery is required for aortic regurgitation in 90 days, which is in August. But I don't have the name of the surgeon or the exact date and time of surgery. Yes, that's correct.

I live on the 4th floor and can easily go up the stairs every day. My only symptom is occasional feeling of lightheadedness and feeling that I might faint. My blood pressure is around 110/52.

Since I'm from Bosnia I don't have much options - Belgrade is the only available heart centre in neighbouring Serbia where I can have surgery.

Nobody talked to me and they won't because that's how they do it. And if you don't have connections there's no way you can reach any of the surgeons to talk with them. That's reality of life in this part of the world.

Ever since they told me that I will have to go through this torture again I am paralyzed. From the moment I wake up until the moment I fall asleep I'm just thinking about what decision to make and reliving the trauma of my past surgery.

I have Marfan syndrome and I feel like my life is rapidly collapsing in the past 4 years. I will very likely have another eye surgery (my 5th for now) in the near future and potentially being on Warfarin will make it more risky and complicated. I also have scoliosis which makes everything even more disgusting.

What to do?? To reject the surgery and try to live the remaining 1-2 years or to get hooked on mechanical valve and Warfarin for life.
Ticking and Warfarin are terrifying to me. My quality of life has already been on decline and with mechanical valve and warfarin I think I would actually get diagnosed with clinical depression.

There's no guarantee that even if I accept the surgery I won't be in the same position in 1,2 or 3 years with another valve severely leaking. The prognosis for Marfan syndrom is pretty bleak - frequent heart surgeries are very common.
Is that life??

So many questions on my mind... I can't even remember them.

What is like to go to the dentist while on Warfarin?
What if I for some reason only eat once on some day, will that disrupt my INR?
Can you listen to music with the ticking?
Can you eat cheese, milk, pork, pizza, beef, eggs, beans, rice on Warfarin? What about apples, bananas, ranges, cappucino?
Do you regret having mechanical valve??

Please share your experience.

I'm 31 and completely lost right now. I go through so much emotions from anger, denial to overwhelming sensation of loneliness.
I don't know what to do and I am so tired of life...

I sent u a pp!

 

[Lucker]

Nik B​

You have a lot to deal with, and it's hard, I know. All I can say that a man has inner sthrength that helped to endure countless dangers throughout man's evolution and history.
You are not alone. Here's a video of a classic Marfan case. The guy is about your age. He is blind, he has a pectus excavatum, and a wife. He had a dissection and an emergency surgery, when he was in Netherlands for studying. Then, he had a second surgery in Russia for the aortic root, which wasn't worked on first time, perhaps due to emergency. The doctors managed to spare his valve. Look how relentless he is. May be his example will help you, even though it's in Russian, try translated captions. May be you'll consider having a surgery in Russia, at this very clinic. The level of the heart surgery here is quite good, and it's not too expensive. Be strong, don't go into yourself, and depression will go away eventually.

 

[dick0236]

So many questions on my mind... I can't even remember them.

What is like to go to the dentist while on Warfarin?
What if I for some reason only eat once on some day, will that disrupt my INR?
Can you listen to music with the ticking?
Can you eat cheese, milk, pork, pizza, beef, eggs, beans, rice on Warfarin? What about apples, bananas, ranges, cappucino?
Do you regret having mechanical valve??

I'll answer your questions based on my experience with my mechanical valve.

I go to my dentist every 6 months for cleaning without any adjustment of warfarin. I had a tooth pulled two weeks ago with no adjustment of warfarin. I do take an antibiotic before invasive dental work.

I often eat one meal each day and have found that what I eat, when I eat, or how much I eat has little, if any, effect on my INR. That said, I do not "pig out" on foods that I know have high vitamin K content.....but I eat them in moderation.

I haven't heard my valve in decades.

I eat everything you list except bananas.

Obviously, after 56+ years with my one and only mechanical aortic heart valve, I am very satisfied !!

I was also 31 when I was advised to have the aortic valve replaced if I wanted to live past age 40. I initially thought I would only live about twenty years, even after having the valve replaced.........I was wrong

 

[TGM]

Hey lovely people I need your help and life experience tips

In May 2022 I had ascending aorta surgery and it was a complete hell. I've been 20 days at the hospital (high temperature, fluids in the lungs as well in the heart, two additional procedures to extract it), then 7 days home and another 10 days at the hospital. Needless to say that I was both physically and psychologically broken.

Recovery was so slow that I doubted I will ever recover. Immediately on the first check up doctor noticed "trivial" aortic regurgitation. But they said there's nothing to worry about. And a month ago in May 2023, exactly on my 1 year anniversary they said I have severe aortic regurgitation 3-4+ and small mitral and tricuspid regurgitations 1+ but surgery is required for aortic regurgitation in 90 days, which is in August. But I don't have the name of the surgeon or the exact date and time of surgery. Yes, that's correct.

I live on the 4th floor and can easily go up the stairs every day. My only symptom is occasional feeling of lightheadedness and feeling that I might faint. My blood pressure is around 110/52.

Since I'm from Bosnia I don't have much options - Belgrade is the only available heart centre in neighbouring Serbia where I can have surgery.

Nobody talked to me and they won't because that's how they do it. And if you don't have connections there's no way you can reach any of the surgeons to talk with them. That's reality of life in this part of the world.

Ever since they told me that I will have to go through this torture again I am paralyzed. From the moment I wake up until the moment I fall asleep I'm just thinking about what decision to make and reliving the trauma of my past surgery.

I have Marfan syndrome and I feel like my life is rapidly collapsing in the past 4 years. I will very likely have another eye surgery (my 5th for now) in the near future and potentially being on Warfarin will make it more risky and complicated. I also have scoliosis which makes everything even more disgusting.

What to do?? To reject the surgery and try to live the remaining 1-2 years or to get hooked on mechanical valve and Warfarin for life.
Ticking and Warfarin are terrifying to me. My quality of life has already been on decline and with mechanical valve and warfarin I think I would actually get diagnosed with clinical depression.

There's no guarantee that even if I accept the surgery I won't be in the same position in 1,2 or 3 years with another valve severely leaking. The prognosis for Marfan syndrom is pretty bleak - frequent heart surgeries are very common.
Is that life??

So many questions on my mind... I can't even remember them.

What is like to go to the dentist while on Warfarin?
What if I for some reason only eat once on some day, will that disrupt my INR?
Can you listen to music with the ticking?
Can you eat cheese, milk, pork, pizza, beef, eggs, beans, rice on Warfarin? What about apples, bananas, ranges, cappucino?
Do you regret having mechanical valve??

Please share your experience.

I'm 31 and completely lost right now. I go through so much emotions from anger, denial to overwhelming sensation of loneliness.
I don't know what to do and I am so tired of life...

I’m so sorry Nik! That is really lousy to need this so soon after your most recent surgery. My son, aged 20, has something called Noonan Syndrome and like you, he has several medical issues (scoliosis, congenital heart, short stature, etc…) so lots of surgeries, doctor appointments, things to worry about. His 4th open heart was very difficult and sounds similar to your 2022 procedure. I do hope you have a support system to lean on as you prepare. I can’t offer Much advise but wanted you to know you aren’t alone