The end of the beginning, the beginning of the end or new beginnings?

[JannerJohn]

Prior to a complete shock diagnosis of severe aortic stenosis and ascending aortic aneurysm in October 2020 I assumed I was a fit father of three young children who was balanced with a demanding career and happy family life.
I have not hidden the fact that this has really shaken me to my core and completely upset the apple cart particularly for my mental health. I'm still awaiting surgery which I am petrified about and I'm struggling to come to terms with what I see may potentially end my life soon, dramatically shorten my life expectancy or leave me incapacitated or with a dramatically reduced quality of life. As I see it this diagnosis at 50 years old is incredibly rare, yes its a pipe and a valve that is in theory repairable with what the surgeons deem to be an accetable level of risk. None of the repair options are ideal so compromise and life adaption is / will be required, follow the data or follow your intuition it is not a binary decision really. I worry about what life after surgery will be and what the limitations are even with this diagnosis I have no symptoms (I guess they are in the post) and yesterday I was paddleboarding, biking and scooting with my kids but as far as I have been concerned these are just normal activities nothing special that most people do without any thought at all. I don't want this not to be the case in the future. Surely most people if they look after themselves live on average well into their 70s and beyond this has been my family experience and yes we have lost fiends and family members much younger to other accidents and diseases but this is the exception and I am not being disingenuous to others that this happens to life of full of unknown and intentional risks. I should be grateful for 50 healthy years and much worse things can happen. People are born with congenital heart conditions and I guess I am one of them it just took 50 years for this bicuspid valve to show its hand. I think I am bitter about this I'm not being melodramatic about it, this is how I feel and bitterness is not a very nice trait. I worry desperately for my young childrens future possibly without their father. But I also worry about the fact that I have never seen anyone with a full zipper on the beach or at the local pool, just what does this do to peoples confidence or is this all in my head? Do people who have surgery in their 50s live into their 70s and 80s? (rhetorical question) In fact as you can probably tell you name it and I have worried about it real or imagined.
I know I need to suck it up buttercup, trust my surgeons skill, judgement and expertise and crack on there is no other option. Some days its just not that easy.

 

[Warrick]

Now days I think the risk of dying during first time OHS is about 1%, my father had valve replacement OHS in 1985 and out of a group of him and 3 others he was the only one who survived so things have come a long way.

He is 80 on monday and has just been given a very short time to live as he has terminal cancer. So its not the valve failing or the so called ‘horrors’ of warfarin that will be his end.
I had my valve installed at 38 and yes its no picnic and some days are better than others for a long time. I have 3 children also and work more than im at home some weeks.
I had a bicuspid valve without aneurysm just dialated and not repaired so I expect I’ll get another turn at some point.
A mates grandson has had 3 OHSs and will need more, hes only 14 so that kind of puts it in perspective a bit I think.
Like the saying goes the only certainties are death and taxes...

 

[Chuck C]

Prior to a complete shock diagnosis of severe aortic stenosis and ascending aortic aneurysm in October 2020 I assumed I was a fit father of three young children who was balanced with a demanding career and happy family life.
I have not hidden the fact that this has really shaken me to my core and completely upset the apple cart particularly for my mental health. I'm still awaiting surgery which I am petrified about and I'm struggling to come to terms with what I see may potentially end my life soon, dramatically shorten my life expectancy or leave me incapacitated or with a dramatically reduced quality of life. As I see it this diagnosis at 50 years old is incredibly rare, yes its a pipe and a valve that is in theory repairable with what the surgeons deem to be an accetable level of risk. None of the repair options are ideal so compromise and life adaption is / will be required, follow the data or follow your intuition it is not a binary decision really. I worry about what life after surgery will be and what the limitations are even with this diagnosis I have no symptoms (I guess they are in the post) and yesterday I was paddleboarding, biking and scooting with my kids but as far as I have been concerned these are just normal activities nothing special that most people do without any thought at all. I don't want this not to be the case in the future. Surely most people if they look after themselves live on average well into their 70s and beyond this has been my family experience and yes we have lost fiends and family members much younger to other accidents and diseases but this is the exception and I am not being disingenuous to others that this happens to life of full of unknown and intentional risks. I should be grateful for 50 healthy years and much worse things can happen. People are born with congenital heart conditions and I guess I am one of them it just took 50 years for this bicuspid valve to show its hand. I think I am bitter about this I'm not being melodramatic about it, this is how I feel and bitterness is not a very nice trait. I worry desperately for my young childrens future possibly without their father. But I also worry about the fact that I have never seen anyone with a full zipper on the beach or at the local pool, just what does this do to peoples confidence or is this all in my head? Do people who have surgery in their 50s live into their 70s and 80s? (rhetorical question) In fact as you can probably tell you name it and I have worried about it real or imagined.
I know I need to suck it up buttercup, trust my surgeons skill, judgement and expertise and crack on there is no other option. Some days its just not that easy.

" But I also worry about the fact that I have never seen anyone with a full zipper on the beach or at the local pool"
If this concerns you, you should explore getting a mini sternotomy. Dr. Shemin at UCLA completed my surgery 12 days ago at UCLA using a mini-sternotomy. He replaced my BAV aortic valve, aortic root and ascending aorta- also called a Bentall procedure. I only have a 3.5 inch incision on my chest which is healing very nicely. He uses wires close the bones together in the sternum, which all do, but he used glue to connect the outer tissue layers. Although this was not really something that was important to me, the result is something which will barely be visible when healed. I have heard that for some of his patients that their scar is not even visible at all after one year. Mine is already looking like it will be one of those. It kind of bums me out, because it will not be very impressive when I am old and comparing battle wounds. And.....I do expect to grow old and someday compare battle wounds. As long as you get this done in a timely manner and don't wait for structural heart damage, you have every reason to expect a normal lifespan.
Not sure that you will listen, but I feel amazing and have felt amazing from about day 6 onward. Before that, pain medicine made me feel amazing anyway,
So, my advice, don't put it off if it is time. If your fear causes you to delay to the point of dropping ejection fraction and the onset of heart failure, then you may indeed have a shortened life expectancy.
Pick your surgeon, get it done and enjoy life to its fullest. Per your question, I look at it as a new beginning bringing with it a new appreciation for life.

You can see the incision is small and healing well just 12 days out:

 

[Superman]

I’ll be at the resort pool in Florida today with my beautiful scar on full display. But remember, swim shirts are more and more common and might be a preference for those with scars. My boys wear swim shirts because they prefer not to slather up with sun screen or get burned.

Went kayaking yesterday with my wife and four of my five kids. Saw a lot of manatee. That was pretty cool.

I’ll remind you that I’m 48 and had my first surgery at 17 (valve) and second at 36 (aneurysm). I’ve been taking warfarin for over 30 years.

Life goes on. So if this is a poll, I vote new beginnings.

ETA, just got back from a 5k run this morning with my wife. Under 30 minutes. I’ll take it.

 

[dick0236]

I know I need to suck it up buttercup, trust my surgeons skill, judgement and expertise and crack on there is no other option. Some days its just not that easy.

Your fears are real and most, if not all of us have had similar thoughts. I chuckled when reading your fear of going to the beach, or pool, with a "zipper". Mine looked as if it were done with a chainsaw that followed a surgical line that was drawn free-hand with a magic marker.......it still looks pretty crude but, at my age, who gives a ****.......'cause it worked and has kept me alive and off the table for a long time.

I know it should be easy for an old man of 85 to say "suck it up buttercup".......but I've been where you are and I know the thought and fears that "scramble" our brain. The important thing is for you to keep this new "bump in the road" in its propber perspective. A Cardio told me, several years back, that the valve will not be what gets me in the end.......and, by cracky, I think he was right

 

[John K]

Had a full sternotomy a year ago and all I have is a thin white line, not sure if you would even notice unless you were looking for it.

John K

 

[JannerJohn]

I’ll be at the resort pool in Florida today with my beautiful scar on full display. But remember, swim shirts are more and more common and might be a preference for those with scars. My boys wear swim shirts because they prefer not to slather up with sun screen or get burned.

Went kayaking yesterday with my wife and four of my five kids. Saw a lot of manatee. That was pretty cool.

I’ll remind you that I’m 48 and had my first surgery at 17 (valve) and second at 36 (aneurysm). I’ve been taking warfarin for over 30 years.

Life goes on. So if this is a poll, I vote new beginnings.

ETA, just got back from a 5k run this morning with my wife. Under 30 minutes. I’ll take it.

The trouble is I'm doing all of that now. This is not a club anybody wants to be a member of really is it.

 

[Superman]

The trouble is I'm doing all of that now. This is not a club anybody wants to be a member of really is it.

And you’re going to go back to doing it after. I’ll take this club over the other alternative club all day. My wife and kids are glad I’m part of this club as well.

 

[JannerJohn]

" But I also worry about the fact that I have never seen anyone with a full zipper on the beach or at the local pool"
If this concerns you, you should explore getting a mini sternotomy. Dr. Shemin at UCLA completed my surgery 12 days ago at UCLA using a mini-sternotomy. He replaced my BAV aortic valve, aortic root and ascending aorta- also called a Bentall procedure. I only have a 3.5 inch incision on my chest which is healing very nicely. He uses wires close the bones together in the sternum, which all do, but he used glue to connect the outer tissue layers. Although this was not really something that was important to me, the result is something which will barely be visible when healed. I have heard that for some of his patients that their scar is not even visible at all after one year. Mine is already looking like it will be one of those. It kind of bums me out, because it will not be very impressive when I am old and comparing battle wounds. And.....I do expect to grow old and someday compare battle wounds. As long as you get this done in a timely manner and don't wait for structural heart damage, you have every reason to expect a normal lifespan.
Not sure that you will listen, but I feel amazing and have felt amazing from about day 6 onward. Before that, pain medicine made me feel amazing anyway,
So, my advice, don't put it off if it is time. If your fear causes you to delay to the point of dropping ejection fraction and the onset of heart failure, then you may indeed have a shortened life expectancy.
Pick your surgeon, get it done and enjoy life to its fullest. Per your question, I look at it as a new beginning bringing with it a new appreciation for life.

You can see the incision is small and healing well just 12 days out:

" But I also worry about the fact that I have never seen anyone with a full zipper on the beach or at the local pool"
If this concerns you, you should explore getting a mini sternotomy. Dr. Shemin at UCLA completed my surgery 12 days ago at UCLA using a mini-sternotomy. He replaced my BAV aortic valve, aortic root and ascending aorta- also called a Bentall procedure. I only have a 3.5 inch incision on my chest which is healing very nicely. He uses wires close the bones together in the sternum, which all do, but he used glue to connect the outer tissue layers. Although this was not really something that was important to me, the result is something which will barely be visible when healed. I have heard that for some of his patients that their scar is not even visible at all after one year. Mine is already looking like it will be one of those. It kind of bums me out, because it will not be very impressive when I am old and comparing battle wounds. And.....I do expect to grow old and someday compare battle wounds. As long as you get this done in a timely manner and don't wait for structural heart damage, you have every reason to expect a normal lifespan.
Not sure that you will listen, but I feel amazing and have felt amazing from about day 6 onward. Before that, pain medicine made me feel amazing anyway,
So, my advice, don't put it off if it is time. If your fear causes you to delay to the point of dropping ejection fraction and the onset of heart failure, then you may indeed have a shortened life expectancy.
Pick your surgeon, get it done and enjoy life to its fullest. Per your question, I look at it as a new beginning bringing with it a new appreciation for life.

You can see the incision is small and healing well just 12 days out:

In all fairness Chuck I would feel a lot happier if this could be undertaken using minimally invasive methods in the UK but very few if any surgeons would touch a root replacement with AVR without a full zipper. I don't know if this to do with risk or surgical skill a bit of both I guess.

 

[Chuck C]

In all fairness Chuck I would feel a lot happier if this could be undertaken using minimally invasive methods in the UK but very few if any surgeons would touch a root replacement with AVR without a full zipper. I don't know if this to do with risk or surgical skill a bit of both I guess.

Sorry, I had forgotten that you were in the UK. I think that the number of surgeons who can pull it off is a very small number. When I look at the 3.5 inch incision, it just blows me away that he was able to achieve it all through that small open.
Better to go with the full sternotomy then. You don't want to go with some guy who is learning how to do the mini, just needs more practice

Well, wearing a shirt at the beach is not a bad option when you get to be our age.

Sometimes I wish a few more people would wear shirts at the beach

 

[Chuck C]

Had a full sternotomy a year ago and all I have is a thin white line, not sure if you would even notice unless you were looking for it.

John K

did your surgeon use glue? Mine uses glue for the exterior tissue, which minimizes scarring apparently

 

[JannerJohn]

Sorry, I had forgotten that you were in the UK. I think that the number of surgeons who can pull it off is a very small number. When I look at the 3.5 inch incision, it just blows me away that he was able to achieve it all through that small open.
Better to go with the full sternotomy then. You don't want to go with some guy who is learning how to do the mini, just needs more practice

Well, wearing a shirt at the beach is not a bad option when you get to be our age.

Sometimes I wish a few more people would wear shirts at the beach

Ha ha I don't really think you get amateur Cardiothoracic Surgeons plus the Bentall Procedure was invented in the UK so you would think our surgeons would have the hang of it. You can get it done via Mini Sternotomy but it is not prevalent, isolated AVR is done using minimally invasive methods. My surgeon says he thinks the risk is to high for AVR and ascending aorta replacement vs the risk from having a median sternotomy. It is a bit disappointing really. Plus you are very fortunate as Dr. Shemin is one if the US leading proponents of minimally invasive surgery by the look of it.

 

[Chuck C]

Ha ha I don't really think you get amateur Cardiothoracic Surgeons plus the Bentall Procedure was invented in the UK so you would think our surgeons would have the hang of it. You can get it done via Mini Sternotomy but it is not prevalent, isolated AVR is done using minimally invasive methods. My surgeon says he thinks the risk is to high for AVR and ascending aorta replacement vs the risk from having a median sternotomy. It is a bit disappointing really. Plus you are very fortunate as Dr. Shemin is one if the US leading proponents of minimally invasive surgery by the look of it.

Yes, Dr. Shemin has been doing the mini for many years.

 

[vitdoc]

As a physician with three open hearts under my belt I think this discussion of full vs mini sternotomy is a bit of a joke. Unless one's career is based on the look of the chest (which may not look that much different with either approach) the last thing one would worry about is the size of the incision. Getting the job done expeditiously is the most important issue. The time that the brain is on ice to do the aneurysm repair is probably the most important issue with the surgery.
So if someone can do the procedure quickly and well with a smaller incision great. If not no big issue. If doing the case with the smaller opening increases the brain cooling time then not so good.
When I had my second replacement of my aortic valve in 1983 I had two units of my own blood drawn before surgery in case I needed blood. These two units were not used for reasons to this day I have not fully figured out. I did fine but I was very anemic post surgery which took about six weeks to correct itself. I think that I didn't get the blood to keep the surgical statistics looking good as far as doing surgery without needing blood. So discussions about the size of the incision to me fall somewhat into the same category. If someone can show that in a meaningful way that incision size has some major benefits and no negative issues I would not care one way or another what size the incision was.

 

[Superman]

I don’t think it’s about the incision so much as it is returning to somewhat normal activity after cracking the sternum open. Much easier with a mini vs a full. I’ve had two full. I can see the appeal of a mini and I already have the scars.

 

[JannerJohn]

For me its about returning as best possible to a reasonably normal life as quickly as possible. I don't think I will need brain freezing at least I hope not the surgeon said he can clamp for the aneurysm. Not having a good day on the worry front as Spring has blossomed the weather is glorious and I should be happy its been an awful year what with covid and the diagnosis, but I don't think I will be around for another and I can't rid my head of these thoughts no matter hard I try.

 

[Chuck C]

I don’t think it’s about the incision so much as it is returning to somewhat normal activity after cracking the sternum open. Much easier with a mini vs a full. I’ve had two full. I can see the appeal of a mini and I already have the scars.

I feel the same way. The number one factor should be outcomes. If any negative to outcomes whatsoever, then go for the full crack. If it is neutral, I would choose the mini, not because of looking better on the beach, just because it is a quicker time to return to normal. I had the mini and 13 days out I feel very normal. My biggest issue to constantly remind my self that I had OHS 13 days ago and am still healing, so don't do anything that I am not supposed to do, even if I feel like I can do it. For example, a couple of nights ago I got into bed, just as I would have done pre-surgery. There was no pain, but I still need to do all the guideline methods for such things, so that I don't accidently do some damage while healing.

 

[ZechariahLi]

I guess I could relate to your feelings @JannerJohn
There are so many positive posts, encouragements and real experiences here, but I just cannot help being drown in the possibility of not being able to be there for my young children too soon.

The diagnose came when I was 28 back in 2016, BAV with severe AR and slightly dilated LV.

Since then, there isn't a single day that goes by without me thinking what-ifs.
Before my diagnose, I don't feel anything abnormal. Maybe it just never occurs to me that I had any heart ailments. Ever since I knew about it, I became hyper aware of my heart and sometimes I get the sense of blood rushing through my chest or a fluttering sensation that could easily ruin my day thinking if the time has come for me to go for surgery.

I have been on yearly echo since 2016 with my cardiologists. Had my latest scan last week and he said nothing much has changed so I don't have to opt for surgery right away, but sooner or later I will need to go for it. Sometimes the occasionally mode swing and a slight discomfort made me wonder if I should go for the surgery now. Then again, it does not guarantee the AVR will fix everything. And having done the surgery in my early 30s, it is possible that I need another one down the road.

It's the uncertainty that made me anxious, the fear of absences from my family. I was trained as an aircraft engineer and working in the precision engineering industry. I'm accustomed to failures, human-errors, what-ifs at work place and I guess that might be why I'm pretty good at what I do. But this also made me suffer so much mentally when I'm became the subject.

I thought a lot about should I be writing this nutrition-less reply to your post, where veterans have contributed their experiences (I'm really thankful for assurances). Well, I just want to let you know that you are not alone. There is a reason why we have to go through this, maybe later we could be a sources of assurance to others, or maybe there are other reasons. Being in my current condition made me humble, more thoughtful. I guess I use to be an arrogant prick. There are occasional mode swings but I appreciate and treasure my family and friends more. I do feel the bitterness, yet I am thankful as well. Often times bitterness more than thankfulness though.

 

[John K]

did your surgeon use glue? Mine uses glue for the exterior tissue, which minimizes scarring apparently

Yes, she did.

I would agree that glue reduces scaring as the scars from my drain tubes which were stitched are more noticeable then from my incision.

John K