Monsters in the attic

[Captain Cavemen]

Thank you all for your valued responses and experiences to my previous posts. I have read a lot of threads on this forum and it is definitely the most rational and informed on the web you are all incredibly brave and also very giving.

Now for a more subtle question, just how do you control those nerves? I'm lucky in a sense that my condition Aortic Stenosis and aneurysm has been found. I'm also fortunate to have one of the best surgeons in the UK at a top heart hospital the Royal Brompton. So where has all this anxiety come from, obviously the prospect of OHS is enough to scare the wits out of anyone and this must be normal particularly if your a husband and parent to young ones. The trouble is it comes in unpredictable waves of confidence followed by "I don't think I will survive this" thoughts.

I think my main worries must be common or experienced by many these are:

1. Have I made the correct valve choice? I have provisionally decided on the Edwards Resilia valve but I'm not particularly averse to mechanical the surgeon said decide on the day if you want. The surgeon is very confident with this valve and presented the risks for this tissue valve versus the risks associated with mechanical and long term anti coagulation / annual risks, versus reoperation risks. I think the surgeon genuinely believes that this valve along with future valve in valve offers a credible alternative to a mechanical prosthesis for people in my age group. Noting that a mechanical valve would be the normal recommendation for patients in my age group and one that I can see is a common choice for members of this forum. As part of the pre op they have assessed me for TVAR and all looks ok. Saying all that reading Dick0236 posts is very inspirational in terms of mechanical valve longevity.

2. For some reason the aneurysm repair really worries me I know its 'only a pipe' and I can't quite pin down exactly where my fears come from. Its possible something as primal as how / will it all stay in place.

3. Do people ever fully recover from these surgeries and is it possible to be the old me again? The last part is a bit self indulgent but it is important for all of us I guess.

4. I'm having this surgery done minimally invasively via a mini / hemi sternotomy for which I'm grateful. For some reason this is psychologically very important to me but I see some centres particularlly in the US do this operation via a Right Anterior Thoracotomy and this now frustrates me and makes me think why can't they all do it like this, why haven't they got a lifelong tissue valve blah blah blah. I know there are good technical reasons for this in terms of access and doing the best job.

Once again your experiences of these concerns and how you dealt with them will be greatly welcomed.

 

[dick0236]

Thank you all for your valued responses and experiences to my previous posts. I have read a lot of threads on this forum and it is definitely the most rational and informed on the web you are all incredibly brave and also very giving.

........ So where has all this anxiety come from, obviously the prospect of OHS is enough to scare the wits out of anyone and this must be normal particularly if your a husband and parent to young ones. The trouble is it comes in unpredictable waves of confidence followed by "I don't think I will survive this" thoughts.

I think my main worries must be common or experienced by many these are:.......

.........1. Have I made the correct valve choice? I have provisionally decided on the Edwards Resilia valve but I'm not

..........3. Do people ever fully recover from these surgeries and is it possible to be the old me again? The last part is a bit self indulgent but it is important for all of us I guess.

I agree that this forum is probably one of the best on the web for straight talk.

I agree that the prospect of OHS will "scare the wits" out of a normal person with a young family. In my case, I think it was easier for me than today's patient. There were no valve choices, as far as I knew. I got the only valve on the market so the valve choice was made for me. I was kinda nieve and it was easy to put a lot of trust in doctors back then.

You will make the correct valve choice regardless of which valve you choose. The important thing is to correct the current problem. Any choice we make today will be kinda obsolete a few years from now......and can be corrected, if necessaary.

I have not fully recovered. The presence of the artificial valve has always been in the back of my mind. As far as I know, I have always been able to do whatever I wanted........and could do whatever my peers could do. This is a BIG DEAL, but years from now, if you are like me, you will wonder why you gave it so much space in your brain.

Godd luck

 

[Beach77]

Captain Caveman, you can do this!

My surgery was in Dec. 2020 and I had my bicuspid aorta valve replaced with an On-X valve.

The decision of which valve I wanted was extremely hard for me too!!! Once I was told to be prepared for surgery in a few years, I only studied the TAVR. When the doctor told me that the time had come for my surgery, I was adamant that I wanted a TAVR. I was 64. All the pre-surgery tests started, I met with the TAVR surgeon and felt he was the surgeon for me. During the work-up, the heart team of the hospital met and approved the TAVR for me. My doctor said I needed to meet with a heart surgeon because he would be on-call during my surgery, in-case one was needed. He said, oh you might want to talk to him about the On-X, that would also be a good fit for you, either valve would be good for me. That’s when I studied the On-X. I went to the appointment with lot of questions. The concerns I had were about anticoagulants and the surgery itself. Leaving the appointment, a war started in my head!!! It sounds like you’re having the same one. It will pass!

My aneurysm wasn’t large enough for the surgery, but the surgeon said he would look at it, and decide during surgery, if he should repair it. I wanted it repaired because I didn’t want to have another surgery later.

• It took me over month to decided which valve I wanted. My TAVR doctor gave me his email address and I could text him with any questions about either procedure. He even called me a few times. He is awesome! My choice changed daily, sometimes multiple times in a day! (agonizing to me!) I ended up going with the On-X. There have been a few times, when I started to question my decision, but I quickly remind myself. The decision has been made and I picked the one I thought was best. Warfarin hasn’t been an issue after all, just like the doctors told me.
• My aneurysm was not repaired because it was "very healthy looking". That makes me feel a little better, but I still wished he would have fixed it! A way for you to look at getting yours fixed is it will be repaired! You won’t have the issue of still being concerned about it rupturing! Rupturing sounds so scary to me! I still worry about that! Rupturing or repaired??? What would give you the best life?
• I haven’t felt this good in years!!!! I wished I could have had the surgery a few years before!!! I turned 65 on the day I was discharged from the hospital. So many people on here are living their lives how they want! They’re not living under the constraints of a sick heart.
• I also had the minimally sternotomy and once I had the okay, I started using Bio-Oil. My scare is hardly noticeable now! It’s only been about 8 months too!

Wishing you peace until your surgery and a successfully surgery!

 

[pellicle]

Do people ever fully recover from these surgeries and is it possible to be the old me again?

In the main yes
I have 3 times
Im sure you've see the photographs and video.

The whole post sounds a little like anxiety.

Maybe the recognition of that will help

 

[pellicle]

@Captain Cavemen
I'll add this rather than edit, in case you have already read the above
If you are reasonably in good shape then you will get back there in a few months. I had some lengthy protracted issues post surgery , but it took me a few months after surgery to get back to a level of fitness I was in the period before it. I lived near the beach and we went walking and jogging there. I started back on pole jogging (which is like an XC Ski style) within a few months.
Eg

This is 2009. The video is amusing to me because I didn't notice that my mate wasn't even looking and had become distracted by ice formations. As an Australian he'd of course never seen anything like that. I had already been living there 4 years already.

The point is that the very purpose of this surgery (no matter which valve you're getting) is to restore proper function and then just like fixing any bit of plumbing its restored to relatively normal.

 

[TellTaleHeart]

Cap, it could have been me writing your post. I have the same (completely understandable) anxiety about my pending procedure. I temper it with the insights of fellow travelers from sites like this and others, and knowing my surgeon will be someone who does these pretty routinely. But the whole concept, well, it is pretty mind blowing. Dacron aorta? I hear Dacron and I think back to butt-ugly shirts I wore in my youth trying to impress the ladies. Now it will be integrated into my hearts health!
I haven’t been through it yet, so I can offer nothing more than encouragement. I am steeling myself for what I know will be a few challenging months post-surgery, but nothing wrong with a challenge. You got this!

 

[cldlhd]

Thank you all for your valued responses and experiences to my previous posts. I have read a lot of threads on this forum and it is definitely the most rational and informed on the web you are all incredibly brave and also very giving.

Now for a more subtle question, just how do you control those nerves? I'm lucky in a sense that my condition Aortic Stenosis and aneurysm has been found. I'm also fortunate to have one of the best surgeons in the UK at a top heart hospital the Royal Brompton. So where has all this anxiety come from, obviously the prospect of OHS is enough to scare the wits out of anyone and this must be normal particularly if your a husband and parent to young ones. The trouble is it comes in unpredictable waves of confidence followed by "I don't think I will survive this" thoughts.

I think my main worries must be common or experienced by many these are:

1. Have I made the correct valve choice? I have provisionally decided on the Edwards Resilia valve but I'm not particularly averse to mechanical the surgeon said decide on the day if you want. The surgeon is very confident with this valve and presented the risks for this tissue valve versus the risks associated with mechanical and long term anti coagulation / annual risks, versus reoperation risks. I think the surgeon genuinely believes that this valve along with future valve in valve offers a credible alternative to a mechanical prosthesis for people in my age group. Noting that a mechanical valve would be the normal recommendation for patients in my age group and one that I can see is a common choice for members of this forum. As part of the pre op they have assessed me for TVAR and all looks ok. Saying all that reading Dick0236 posts is very inspirational in terms of mechanical valve longevity.

2. For some reason the aneurysm repair really worries me I know its 'only a pipe' and I can't quite pin down exactly where my fears come from. Its possible something as primal as how / will it all stay in place.

3. Do people ever fully recover from these surgeries and is it possible to be the old me again? The last part is a bit self indulgent but it is important for all of us I guess.

4. I'm having this surgery done minimally invasively via a mini / hemi sternotomy for which I'm grateful. For some reason this is psychologically very important to me but I see some centres particularlly in the US do this operation via a Right Anterior Thoracotomy and this now frustrates me and makes me think why can't they all do it like this, why haven't they got a lifelong tissue valve blah blah blah. I know there are good technical reasons for this in terms of access and doing the best job.

Once again your experiences of these concerns and how you dealt with them will be greatly welcomed.

You didn't say exactly what your age was. Maybe it's out here in another post but I don't remember. I'm back to my normal self , in my surgery 6 years ago and was just about to turn 46 at the time. They ended up keeping my original BAV But I had my aneurysm replaced from the valve all the way up to the hemi arch. So basically the surgery was just as involved if not a little more because working on the valve probably takes a little more time and just replacing it, at least I would imagine. Fwiw I decided given my age at the time to go with a mechanical valve if it was replaced. Everybody is different, every once in awhile I would give a thought, and still do, regarding all this stitching holding the replacement "pipe" and the original material But I believe at this point in time It has a pretty good longevity record. Besides with my aneurysm at approximately 5 cm they're really isn't or wasn't an alternative choice at the time. At least not one that was good. Best wishes

 

[Peej]

Well, I haven't dealt with OHS yet but I am dealing with the mental game and thought process leading up to the surgery.

Normal to have nerves.

I probably would drive myself crazy if I wanted to know every detail about how the things that will be done to me will work.
I'm choosing to focus more on the data & believe in the team that will do my surgery/after care.

The numbers say I will make it and what is put in me will work for a long time so long as I do my part w/maintaining health, taking my meds & monitoring INR. I'm good with that.

3. Do people ever fully recover from these surgeries and is it possible to be the old me again? The last part is a bit self indulgent but it is important for all of us I guess.
I've lurked around the forums for a while & I've read many posts here from those who've had the surgery. Many say they do in fact feel better & didn't even realize they had felt bad. I expect ups/downs along the way but that gives me confidence and assurance.

Valve choice for me (42, about to turn 43 in Sept) was simply based on wanting to be as close to one and done as possible.
There isn't a wrong choice.

 

[caro]

Hi, @Captain Cavemen! I went back and forth between resilia and on-x. I chose on-x and am happy I did as I’ve had no issues with it. Another reason I’m happy with it is because it’s so much better than my native valve. I was asymptomatic before surgery but my blood pressure and pulse were pretty low my whole life. Those were symptoms I didn’t think about until after I had a consistent pulse! It’s so nice now to have a normal pulse and blood pressure. Resilia and mechanical will be better than our problematic native valves. With regard to incision, I got a mini thor. I like it fine. If my surgeon had preference for and more experience with a mini stern or full stern for me, I would have been fine with that. I made sure he had a lot of mini thor experience, and he assessed if I was a good candidate for it.

 

[user 16827]

it's natural to be fearful, voluntarily going into the theatre may be one of the toughest things you may face.
Its a totally counterintuitive thing to do.
don't beat yourself up about being anxious, we all were.

But, ... you will learn a lot about yourself, you will be stronger for it, its an experience in itself.

you certainly can recover fully yes, VR is full of us who have done so.

i repeat myself a lot with this but try to enjoy the journey , drink it in and feel your way through it.

we feel for a reason, if you're feeling worried then just go with that, if you feel optimistic then go with that too.

don't try to supress your feelings , this forum is full of like minded people who understand
so take comfort that worrying is absolutely normal and you have a lot of friends here for you.

 

[tom in MO]

1. Have I made the correct valve choice? Yes. You chose life. My only advice is what my surgeon and cardio told me. Don't chose tissue assuming you will have TAVR in the future. You cannot really know.

3. Do people ever fully recover from these surgeries and is it possible to be the old me again? Hopefully you will not be the "old me again." The old you had damaged valve, stenosis and an aneurysm. Many feel better than before since the stenosis has been alleviated. If you chose tissue, you could return to the "old me" as your tissue valve deteriorates. If that bothers, you chose mechanical. A modern philosopher teaches that if a decision is very hard, it's because both paths have equal merit. In this case you cannot really make a "wrong" choice.

4. I'm having this surgery done minimally invasively via a mini / hemi sternotomy for which I'm grateful. For some reason this is psychologically very important to me... Let the doctors decide how to cut you, that's their job. A full sternotomy is not a bad thing.

 

[almost_hectic]

4. I'm having this surgery done minimally invasively via a mini / hemi sternotomy for which I'm grateful. For some reason this is psychologically very important to me

I had a ministernotomy and my incision scar is about three inches long compared to the traditional 10-12". Although my original plan was Intercostal Valve Replacement Surgery where they go through the space between ribs without cracking any breastbone leaving only a two inch scar. I was told the day of surgery that my scans revealed that was not possible so the plan changed the morning of surgery. My surgeon specializes in minimally invasive procedures and I was sold on the many benefits that were touted, shorter healing time, maintained stability of the sternum, smaller incision meaning less chance for infection. The smaller scar sounded appealing to me as well even though that wasn't most important. Whether its true or not it also gave me the impression the surgeon must be more skilled than surgeons doing it the traditional way, so that added some level of comfort.

 

[Eva]

… , but years from now, if you are like me, you will wonder why you gave it so much space in your brain.

Godd luck

Totally true! I wasted much time crying and worrying what will happen during the surgery or after the surgery, or to the people close to me that I take care off. Now, I regret all that wasted energy and focus on now…the "present" time. For me, my faith that I'll stay around until my "mission is overl!

Fears come from anxiety of the uncertainties! You’re in good hands and knowing that these procedures are a routine these days should calm down most of the fears. And the fact that we are all here after our surgeries!

 

[elMIguel]

For me I found value in the process of wrestling with my anxiety. This allowed me to finally reach a point of acceptance which helped me to shift my focus to what I had control over- my recovery. I don’t think I could’ve arrived there without going through this process. Of course, this is hindsight. At the time if I could have simply flipped a switch in my mind, I would have done so. But I don’t think I would learned nearly as much about myself.