2nd AVR

[LoveMyBraveHeart]

Hello lovely folks,

I am the Fiancee and caretaker of a wonderful human undergoing his 2nd AVR on Friday, August 9th. A little background on us...

Patient is a 25y.o male, no history of heart disease, very healthy, no history of drug or alcohol abuse. Diagnosed with a moderate leaking bicuspid aortic valve, and ascending aortic aneurysm in September of 2018...never had any knowledge of this condition prior to then. He has also been through many (5) orthopedic surgeries as a teenager, has a history of high blood pressure, but has never been urged to seek attention for that as he is "too young" for heart problems.

December of 2018 we flew from Washington State to the Cleveland Clinic to have the aneurysm fixed and the valved repaired or replaced. The Christmas Story came to life as we spent Christmas in the hospital! The operation went well, they were unable to repair the valve, so replaced it with a porcine tissue valve per the patient's request. He was in the ICU for 2 days then moved to step down for an additional 5 days and released to our hotel for 2 days. Then we made the horrible flight home. All was good.

Obviously, there are a lot of follow up appointments, and at the one with his cardiologist, they found a moderate to severe para-valvular leak. The valve he had put in place was needing replacement after only 7 weeks of recovery. More testing came, and they attempted to plug the leak with a non-invasive procedure back in June. That was not successful, so another sternotomy is scheduled for this week, where they will replace the failing valve with the On-X valve, and possibly have to redo the aortic graft as well.

I know all patients are different, which is why I've come here to seek experiences of other patients that have undergone a second AVR (or similar) and what their recovery process was like. Was recovery the same length as the first? Was anyone else really nervous watching their loved one go through another surgery all the while staying strong and focused so their loved one needn't worry? Give me the deets, please! Maybe I just need some support, maybe I need answers, maybe I need to research more.

Thank you for your time,
Jill

 

[Protimenow]

Hi, Jill. I'm sorry to hear about your fiancee.

I've only had one AVR - a St. Jude's mechanical valve. I was 41 years old when I had the surgery, expecting to live the rest of my life without another heart surgery.

It's too late now to second guess your fiancee's decision NOT to have a mechanical valve implanted. Perhaps he was afraid of having to take warfarin. Perhaps he had heard that people taking warfarin couldn't live active lives. Perhaps he was encouraged to believe that heart research would find a non-invasive fix for his porcine valve by the time it failed. Perhaps he had another reason to make the decision that he did.

Many tissue valves can hold up for 8 or more years -- but some (as in your fiancee's case) don't.

It may be well that your fiancee's valve failed this early on -- scarring and adhesions that develop may not be as well developed as they may have become a few years further down the road. This second procedure may be less of an issue for your fiancee than it might have been had it taken longer for the valve to fail. This may be a positive, in evaluating what must be done now.

Not having had a second AVR, I don't know if the recovery process or recovery times would be much different from the first one. The fact that this is a mechanical valve, and not a porcine one, may make recovery smoother, because the danger of rejection is gone.

When I had my AVR surgery, my wife would visit post-op. I don't remember if my young kids were allowed to visit. My mother visited me. I had books to read. I had support during my 7 or 8 days in the hospital.

From the tone of your message, it's clear that you'll be there to provide the support that he needs during post-op times and into the future. His prognosis is much better than it was with a valve that is known to fail after an indeterminable number of years. His life won't be impacted by the need to take warfarin (until something else comes along). You and he will get used to the clicking of the valve.

My wife finds the ticking - when she can hear it - as comforting - she knows that I'm alive and is grateful for this device. You may be able to see it the same way.

Know that we're all here for you (speaking for the others on this forum). I wouldn't be surprised if, over the next few days, members who've had more than one heart surgery don't pop in with information and support.

I hope (and fully expect) that eveything will go very well for your fiancee. And, you no doubt already know, Cleveland Clinic is one of the best places in the world to have this surgery performed.

(One other thing - see if you can get an INR test meter. I personally prefer the Coag-Sense PT2, but if they suggest a Roche CoaguChek XS, it'll also help your fiancee keep track of his INR once it's been stabilized post-op. Taking warfarin is not a big deal - but it's good to be able to check weekly)

 

[Duffey]

It sounds like someone goofed up at Cleveland Clinic. I don’t know whether the type of valve, a tissue or a mechanical, would have made any difference in the outcome. I hope you get an honest appraisal of why the replacement failed before another surgery takes place.

 

[Keithl]

Hello lovely folks,

I am the Fiancee and caretaker of a wonderful human undergoing his 2nd AVR on Friday, August 9th. A little background on us...

Patient is a 25y.o male, no history of heart disease, very healthy, no history of drug or alcohol abuse. Diagnosed with a moderate leaking bicuspid aortic valve, and ascending aortic aneurysm in September of 2018...never had any knowledge of this condition prior to then. He has also been through many (5) orthopedic surgeries as a teenager, has a history of high blood pressure, but has never been urged to seek attention for that as he is "too young" for heart problems.

December of 2018 we flew from Washington State to the Cleveland Clinic to have the aneurysm fixed and the valved repaired or replaced. The Christmas Story came to life as we spent Christmas in the hospital! The operation went well, they were unable to repair the valve, so replaced it with a porcine tissue valve per the patient's request. He was in the ICU for 2 days then moved to step down for an additional 5 days and released to our hotel for 2 days. Then we made the horrible flight home. All was good.

Obviously, there are a lot of follow up appointments, and at the one with his cardiologist, they found a moderate to severe para-valvular leak. The valve he had put in place was needing replacement after only 7 weeks of recovery. More testing came, and they attempted to plug the leak with a non-invasive procedure back in June. That was not successful, so another sternotomy is scheduled for this week, where they will replace the failing valve with the On-X valve, and possibly have to redo the aortic graft as well.

I know all patients are different, which is why I've come here to seek experiences of other patients that have undergone a second AVR (or similar) and what their recovery process was like. Was recovery the same length as the first? Was anyone else really nervous watching their loved one go through another surgery all the while staying strong and focused so their loved one needn't worry? Give me the deets, please! Maybe I just need some support, maybe I need answers, maybe I need to research more.

Thank you for your time,
Jill

Is he going back to Cleveland for second AVR? Who was the surgeon on first AVR?

Best wishes and best of luck for his speedy recovery.

 

[Keithl]

It sounds like someone goofed up at Cleveland Clinic. I don’t know whether the type of valve, a tissue or a mechanical, would have made any difference in the outcome. I hope you get an honest appraisal of why the replacement failed before another surgery takes place.

Why do you think they goofed if the valve had a premature failure or issue?

 

[Warrick]

It being replaced due to a paravalvular leak which is a leak around the sewing cuff so not the leaflets themselves leaking, so a stitching fault.
Must be a major leak as my fathers valve 35 years ago had 3 leaks from memory around the cuff, which they left alone.

 

[LoveMyBraveHeart]

Is he going back to Cleveland for second AVR? Who was the surgeon on first AVR?

Best wishes and best of luck for his speedy recovery.

Thank you for your words of encouragement! We are not travelling back to Cleveland this go round, not because we were unhappy with their care or are bitter about the outcome at all...that hospital and its staff are amazing and the quality of care was top notch. Being away from home was too hard and the flight was a horrible experience. We are staying in WA this time and have a really good rapport with our surgeon here.

The Cleveland surgeon was Dr. Lars Svensson. He is the chairman of the board at CC and has been a pioneer with a lot of cardiothoracic surgery techniques and has many specialties and achievements to his name. Unfortunately, the current tissue valve is just either too small, or the stitches to the native aorta did not hold in place. Neither of which Svensson could predict and we do not blame him for this outcome one bit.

 

[LoveMyBraveHeart]

Yes

It being replaced due to a paravalvular leak which is a leak around the sewing cuff so not the leaflets themselves leaking, so a stitching fault.
Must be a major leak as my fathers valve 35 years ago had 3 leaks from memory around the cuff, which they left alone.

Yes, the leak is quite signifigant... moreso than the regurgitation pre OP. The ejection fraction is much worse now. I can't place blame on anyone, the cards we were dealt just aren't easy ones to play.

 

[LoveMyBraveHeart]

Hi, Jill. I'm sorry to hear about your fiancee.

I've only had one AVR - a St. Jude's mechanical valve. I was 41 years old when I had the surgery, expecting to live the rest of my life without another heart surgery.

It's too late now to second guess your fiancee's decision NOT to have a mechanical valve implanted. Perhaps he was afraid of having to take warfarin. Perhaps he had heard that people taking warfarin couldn't live active lives. Perhaps he was encouraged to believe that heart research would find a non-invasive fix for his porcine valve by the time it failed. Perhaps he had another reason to make the decision that he did.

Many tissue valves can hold up for 8 or more years -- but some (as in your fiancee's case) don't.

It may be well that your fiancee's valve failed this early on -- scarring and adhesions that develop may not be as well developed as they may have become a few years further down the road. This second procedure may be less of an issue for your fiancee than it might have been had it taken longer for the valve to fail. This may be a positive, in evaluating what must be done now.

Not having had a second AVR, I don't know if the recovery process or recovery times would be much different from the first one. The fact that this is a mechanical valve, and not a porcine one, may make recovery smoother, because the danger of rejection is gone.

When I had my AVR surgery, my wife would visit post-op. I don't remember if my young kids were allowed to visit. My mother visited me. I had books to read. I had support during my 7 or 8 days in the hospital.

From the tone of your message, it's clear that you'll be there to provide the support that he needs during post-op times and into the future. His prognosis is much better than it was with a valve that is known to fail after an indeterminable number of years. His life won't be impacted by the need to take warfarin (until something else comes along). You and he will get used to the clicking of the valve.

My wife finds the ticking - when she can hear it - as comforting - she knows that I'm alive and is grateful for this device. You may be able to see it the same way.

Know that we're all here for you (speaking for the others on this forum). I wouldn't be surprised if, over the next few days, members who've had more than one heart surgery don't pop in with information and support.

I hope (and fully expect) that eveything will go very well for your fiancee. And, you no doubt already know, Cleveland Clinic is one of the best places in the world to have this surgery performed.

(One other thing - see if you can get an INR test meter. I personally prefer the Coag-Sense PT2, but if they suggest a Roche CoaguChek XS, it'll also help your fiancee keep track of his INR once it's been stabilized post-op. Taking warfarin is not a big deal - but it's good to be able to check weekly)

Thank you very much for your kind and encouraging words. We are looking forward to moving past this whole thing and moving on with our lives. We just want to plan a vacation without scheduling around appointments.

 

[Keithl]

It being replaced due to a paravalvular leak which is a leak around the sewing cuff so not the leaflets themselves leaking, so a stitching fault.
Must be a major leak as my fathers valve 35 years ago had 3 leaks from memory around the cuff, which they left alone.

Ouch that is unfortunate. Did you pick the surgeon?

 

[LoveMyBraveHeart]

Ouch they is a goof then, now I am real interested in who did the surgery.

Per 5 other cardiac surgeons and 3 cardiologists, it was not surgeon error. Simply anatomy not cooperating. We investigated the situation as thoroughly as we could have. It just wasnt in the cards for this one to work.

 

[DDT77]

Hi Jill,

I've had two AVRs, first when i was twenty, and second about 20 years later (getting close to 20 months ago). I'm on my third life, I guess, in a way. Personally, I perceive a longer recovery the second time, but I'll attribute this more to age than reopening...

Given the limited time between events, I'd be more concerned about the mental aspects, for the patient and those around him. De ja vu may be two edges sword. You'll also get the clicking aspects this time, which some adjustment (again: patient and others). I think I'm used to my clicking / thumping, but there are times when it becomes more apparent - no idea why.

I wouldn't be concerned about warfarin. Had I known that there is so little difficulty with it, I probably would have gone mechanical a few decades ago. but then again, we didn't have on-x, etc available then. We'll likely say something similar in future as well.

For me, they wired sternum shut the first time, and used plates the second time. Curious to know what the surgeons propose for you.

Good luck!

 

[Keithl]

Per 5 other cardiac surgeons and 3 cardiologists, it was not surgeon error. Simply anatomy not cooperating. We investigated the situation as thoroughly as we could have. It just wasnt in the cards for this one to work.

That is a shame then, best of luck.

 

[LoveMyBraveHeart]

Ouch that is unfortunate. Did you pick the surgeon?

Not sure if you are addressing me still, but no we did not pick the surgeon. Mathias' employer footed the bill for the whole trip--surgery, pre OP and post OP testing, hotel, flights, food...the whole shebang. Svensson was assigned to the case.

 

[LoveMyBraveHeart]

Hi Jill,

I've had two AVRs, first when i was twenty, and second about 20 years later (getting close to 20 months ago). I'm on my third life, I guess, in a way. Personally, I perceive a longer recovery the second time, but I'll attribute this more to age than reopening...

Given the limited time between events, I'd be more concerned about the mental aspects, for the patient and those around him. De ja vu may be two edges sword. You'll also get the clicking aspects this time, which some adjustment (again: patient and others). I think I'm used to my clicking / thumping, but there are times when it becomes more apparent - no idea why.

I wouldn't be concerned about warfarin. Had I known that there is so little difficulty with it, I probably would have gone mechanical a few decades ago. but then again, we didn't have on-x, etc available then. We'll likely say something similar in future as well.

For me, they wired sternum shut the first time, and used plates the second time. Curious to know what the surgeons propose for you.

Good luck!

I'm glad to hear you've had 2 successful surgeries and recoveries! We are hoping for the same outcome. I'm also happy to hear not to be too concerned with anticoagulant therapy. As a 25 year old, it was something that definitely scared Mathias, but we are coming around to know he can lead a normal life on coumadin. He already is consistent with his medications and diet, so that shouldn't be much of an adjustment.

Going through this trauma again so soon is definitely shocking. We get anxiety just walking into dr. Offices still, so I'm hoping, through each other, we can find the strength to get through it all. I have to say I am in awe of how resilient and patient Mathias has been throughout treatment. He is a very strong human and I have an endless amount of respect and love for him. As for me, I make a horrid patient, so let's hope the tables never turn. Though I would take his place in this whole nightmare in a heartbeat if I could.

Thank you for the wishes of luck, I hope to report back all good news. And am also interested to see about the plates vs. Tie wire...its always very interesting to see all of his post operative imagery!

 

[pellicle]

Hi
I'm sure he'll be fine. I had 3 in my lifetime (I'm 55 now) and while each was not "fun" it was just down time. Soon it'll be in the rear view mirror

...so their loved one needn't worry? ... Maybe I just need some support,

yes

maybe I need answers, maybe I need to research more.

no

just think about the realities, think about what you can do (visits, washing, company) and don't think about what you can't control. Maybe its also a good time to consider reading Stoic Philosophy

I live by this as my guide: https://en.wikipedia.org/wiki/Meditations

"Be like a rocky promontory against which the restless surf continually pounds; it stands fast while the churning sea is lulled to sleep at its feet. I hear you say, “How unlucky that this should happen to me!” Not at all! Say instead, “How lucky that I am not broken by what has happened and am not afraid of what is about to happen. The same blow might have struck anyone, but not many would have absorbed it without capitulation or complaint.” ​

​

Best Wishes

 

[LoveMyBraveHeart]

Hi
I'm sure he'll be fine. I had 3 in my lifetime (I'm 55 now) and while each was not "fun" it was just down time. Soon it'll be in the rear view mirror



yes



no

just think about the realities, think about what you can do (visits, washing, company) and don't think about what you can't control. Maybe its also a good time to consider reading Stoic Philosophy

I live by this as my guide: https://en.wikipedia.org/wiki/Meditations

"Be like a rocky promontory against which the restless surf continually pounds; it stands fast while the churning sea is lulled to sleep at its feet. I hear you say, “How unlucky that this should happen to me!” Not at all! Say instead, “How lucky that I am not broken by what has happened and am not afraid of what is about to happen. The same blow might have struck anyone, but not many would have absorbed it without capitulation or complaint.” ​

​

Best Wishes

Thank you very much. Having read some of your replies in other threads, I am grateful that you have taken the time to reply to mine. You hold a wealth of knowledge that I am happy to have in my corner, however I do not envy the curve balls that have given you the knowledge on this particular topic. Your ability to share of your experiences helps me so much.

 

[pellicle]

Thank you very much.

feel free to reach out by email or PM if you feel the need to talk thu things at any stage

 

[Paul1972]

Hello lovely folks,

I am the Fiancee and caretaker of a wonderful human undergoing his 2nd AVR on Friday, August 9th. A little background on us...

Patient is a 25y.o male, no history of heart disease, very healthy, no history of drug or alcohol abuse. Diagnosed with a moderate leaking bicuspid aortic valve, and ascending aortic aneurysm in September of 2018...never had any knowledge of this condition prior to then. He has also been through many (5) orthopedic surgeries as a teenager, has a history of high blood pressure, but has never been urged to seek attention for that as he is "too young" for heart problems.

December of 2018 we flew from Washington State to the Cleveland Clinic to have the aneurysm fixed and the valved repaired or replaced. TheChristmas Story came to life as we spent Christmas in the hospital! The operation went well, they were unable to repair the valve, so replaced it with a porcine tissue valve per the patient's request. He was in the ICU for 2 days then moved to step down for an additional 5 days and released to our hotel for 2 days. Then we made the horrible flight home. All was good.

Obviously, there are a lot of follow up appointments, and at the one with his cardiologist, they found a moderate to severe para-valvular leak. The valve he had put in place was needing replacement after only 7 weeks of recovery. More testing came, and they attempted to plug the leak with a non-invasive procedure back in June. That was not successful, so another sternotomy is scheduled for this week, where they will replace the failing valve with the On-X valve, and possibly have to redo the aortic graft as well.

I know all patients are different, which is why I've come here to seek experiences of other patients that have undergone a second AVR (or similar) and what their recovery process was like. Was recovery the same length as the first? Was anyone else really nervous watching their loved one go through another surgery all the while staying strong and focused so their loved one needn't worry? Give me the deets, please! Maybe I just need some support, maybe I need answers, maybe I need to research more.

Thank you for your time,
Jill

Hi Jill , just a quick word of encouragement for you both. I also had a second surgery to replace my valve to a onx valve. There was only 10 months in between the two operations and knowing what I was going into the second time round made the procedure and recovery less stressful for me . I’m certain you’re fiancé will be fine and you will soon be able to look back and enjoy the rest of your lives together. All the best Paul

 

[Protimenow]

Part of a good recovery is a good support system. From reading your posts, and seeing how much you love him, I don't think he could have a better, stronger, more loving support system.