A slight crisis of confidence

[JannerJohn]

Its coming up to the end of 2020 and I turn 50 in January. I'm having a real crisis of confidence (not like me at all), due to needing a new aortic valve with ascending aorta and possible root I'm still not sure. Looking at my young children last night I desperately want to see them grow up :-( I'm essentially asymptomatic and all I can see is the surgery and a future of hospital visits and ongoing health problems. Does anybody have this surgery and go on to live a reasonably normal life free of fear. This has really took the wind out of my sails. Sorry for being a bit of a pain and thanks in advance.

 

[pellicle]

Hi Janner

we have no control over life or death. The "go on without fear" is actually your choice.

I made that choice many times. I can assure you that on my 3rd surgery (a more complex one than the previous 2) I was concerned that I would leave a bereaved wife, but I also knew that I'd done it before.

Here is what I wrote in my blog days before admission
http://cjeastwd.blogspot.com/2011/11/heart-of-matter.html
I would ask you to just reflect on wisdom written over a thousand years ago by humans who have seen more than we have

and

before my surgery I spoke with confidence to my wife for I had done this twice before and she was new to it. I did what I could to make her feel as confident as possible. After deciding that surgery was the path I comited to that path.

When I awoke in ICU I then set about doing everything I could to be back on deck as a good husband to her as quickly as possible. No rush, no anxiety, small steps forward every day, no slides backwards from over doing it.

You'll be fine.

Best Wishes

 

[John K]

You are where I was last year, a aortic aneurism was discovered the end of Dec last year during unrelated medical testing that resulted in surgery at the end of January 2020. Yes, you will have multiple hospital visits initially (pre and post surgery) but they taper off. In my case the surgery caused me to develop AFIB which added to my doctor/hospital visits, however it was only a issue during the first two months after surgery (last episode was in March).

Two months ago I was out in Colorado for work hiking in the mountains and keeping up without issue with younger co-workers and even causing some of them to have trouble keeping up with me. The only changes in my life are I am more aware of what heart is doing and I have medication that I take every day.

The thing to keep in mind is that the surgery and recovery from it are temporary issues and once you are through it life resumes. Without the surgery the problem will just keep getting worse.

John K

 

[epstns]

Janner - Yes, this is serious business, but it does NOT necessarily condemn you to a life of medical visits and invalidism. Not by any means. I did not have the same combination of issues as you -- I had my aortic valve replaced, as well as a bypass and a pacemaker. I had lots of medical visits and tests - for a short while. Then things settled down. My annual medical visits for cardiac-related health amount to seeing my cardio twice a year and having one pacemaker interrogation (different doc) per year. That's it. Once all the post-op stuff is sorted out (and I had a lot of that), you can go back to your regularly scheduled life. I was 52 at diagnosis, 63 at surgery, and am now 73. During that time, my daughter got married, moved across the country and now has two sons. I completed a busy professional career (60+ hours/week) and am now (partly) retired. My wife and I travel (until Covid) and I am still a gym rat 5 or more days a week.

My secret to success, I think, is to keep the practice of only "daydreaming" of how I want my life to be, rather than about how I am afraid it could be. Many of us who have been through these surgeries can attest to the assertion that the patient's attitude can have a major impact on patient outcome. At the time of my surgery, I claimed to be the "poster boy" for AVR complications. I think I hit all the speed bumps on the road to recovery. It never stopped me, maybe slowed me down, but only in the beginning. I guess I made it all seem too easy, because to this day, my wife still won't cut me any slack! Of course, she will admit that she was quite scared for the first few weeks of my recovery, but once I made her go back to work, she stopped worrying.

Hang in there. It is scary at first, but once you figure out that you're going to be fine, you realize that you are.

 

[Freebird]

In December 2018 I got my surprise diagnosis for BAV and an aortic aneurism. I am now 59 years old. I was in severe stenosis with zero symptoms. Just like you, the diagnosis knocked the wind out of my sails and made for a very anxiety-ridden holiday season. Because I had no symptoms I chose to monitor my situation with echos every 6 months. After about a year and a half of this, still feeling no symptoms I finally decided enough was enough and 'volunteered' for the surgery. Then the pandemic hit and everything went on hold.

The day before my surgery, I had to take a covid test to be allowed into the doors of the hospital for my pre-op tests. I was a mess, just thinking I could die the next day in surgery. To my utter surprise, I tested positive for covid and was sent home to quarantine. I'd gone nowhere! Not to a job, not even to a grocery store. Thankfully, I never developed symptoms. But I still had to get two negative tests in order to reschedule the surgery. Multiple doctors have told me that a false positive is extremely rare (like for a pregnancy test). We'll never know. I suppose in some ways this was a blessing as it made me REALLY want to get that surgery over with!

I finally got the surgery at the end of August. I was in the hospital 4 nights. I was simply amazed at how easy it was, compared to what I'd spent 18 months ruminating about. I had very little pain at all. I had zero post-op hospital visits, which is another thing I thought would happen. As it turned out, the spiraling thoughts my mind treated me to during the wait were worse than the reality.

Honestly the most stressful thing that happened to me this year was the covid diagnosis because I knew I'd entered the world of unsettled science, a work in progress. Open heart surgery is old news and settled science.

I hope this helps. I truly know how you feel. The wait was far worse than the anticipation. I wish you well.

 

[dick0236]

.......... Looking at my young children last night I desperately want to see them grow up :-( I'm essentially asymptomatic and all I can see is the surgery and a future of hospital visits and ongoing health problems. Does anybody have this surgery and go on to live a reasonably normal life free of fear. This has really took the wind out of my sails. Sorry for being a bit of a pain and thanks in advance.

I was asymptomatic at the time of my surgery.

My two sons were 6 and 8 years old when I had my Aortic valve replaced....now they are both around 60.......and I have 3 grandkids and 5 great-grandkids as well. I would not be typing this had I not had the surgery.

My mechanical valve is now 50+ years old and I have spent only three days in the hospital......for anything since my valve surgery. Outside of an extra pill, or two, and some lab time I have not needed spending time with doctors.

I have lived a completely normal life doing the things that normal men do......good and bad.

I have been called a "medical miracle" and "lucky" by doctors I have seen over the years.......who knows? One thing is very true, surgery doubled my life expectancy from age 40 before the surgery to 84.....and counting after the surgery.

Good luck in coming to your decision

 

[DachsieMom]

Yes, most of us go on with totally normal lives. My children were 6 and 8 when I had surgery. I have a mechanical aortic valve conduit (graft). I do everything now - run, cross country ski, work an insane amount of hours, etc. I see my cardio once a year and my surgeon once every three years (I am over 5 years out) of surgery. I take warfarin and aspirin every day and home test once a week for an inr test. The only difficulty I have is snow shoveling. I feel fine while I am doing it, terrible 20 minutes later.
I was in the ICU for 5 days and regular unit for one. At your age, you will rapidly recover. I started cardiac rehab at 5 or 6 weeks and was running an 8:30 minute mile (or around 7.5 mph) on the treadmill 12 weeks out - at the beginning of rehab, I couldn’t even walk up my driveway and was 1 mph on the treadmill. I also needed a walker after surgery for some temporary nerve issues. Your age is in your favor.
I would get a colonoscopy before surgery. I’m afraid of going off of warfarin to get one - I am 47, almost 48. That’s the only real challenge - needing to consider future medical procedures. If you are nearing 50 I would get that out of the way.

 

[Superman]

I hadn’t been on a real date when I had my first surgery. Late bloomer. Whatever. I was in high school at the time.

After that I went on to college, got married, we had four amazing children. Discovered an aneurysm. Had another surgery at 36. Now we have five amazing children (side effect of Warfarin)! The second surgery was much harder than the first mentally. I had a lot more riding on the outcome. I was not in a “no big deal” mindset at the time.

I’m 48 now. I bike and run. We take hiking vacations. I go in for a check up every year or so. I take a couple pills in the morning. For the most part, I don’t really think about it. You’ll get through it.

 

[pellicle]

The thing to keep in mind is that the surgery and recovery from it are temporary issues and once you are through it life resumes. Without the surgery the problem will just keep getting worse.

a very succinct summary. I agree wholeheartedly (well without my original Aortic valve and a section of my Aortic artery of course ;-)

 

[pellicle]

I’m 48 now. I bike and run.

as if four kids don't keep you running around enough ;-)

 

[Superman]

as if four kids don't keep you running around enough ;-)

Five, but who’s counting anymore?

 

[pellicle]

I have been called a "medical miracle" and "lucky" by doctors I have seen over the years

the bit I like the most is that these miracles just keep on coming and the science of medicine makes each iteration better safer and less difficult.

Oh and Happy New Year Dick

 

[pellicle]

Five, but who’s counting anymore?

funny, I initially wrote 5, then edited my post when I saw 4 ... clearly you're not just doing running and biking.



PS: keep out of that Cabbage Patch ;-)

Happy New Year mate

 

[enkaynj]

Its coming up to the end of 2020 and I turn 50 in January. I'm having a real crisis of confidence (not like me at all), due to needing a new aortic valve with ascending aorta and possible root I'm still not sure. Looking at my young children last night I desperately want to see them grow up :-( I'm essentially asymptomatic and all I can see is the surgery and a future of hospital visits and ongoing health problems. Does anybody have this surgery and go on to live a reasonably normal life free of fear. This has really took the wind out of my sails. Sorry for being a bit of a pain and thanks in advance.

I had my AVR in 2011 when I turned 51. My brother in law is a cardiologist and helped assuage the fears we had. Technology is so advanced that you don’t have to worry one bit. But we did get our financial house in order, had our wills updated, family portraits taken etc.. so there were less things to worry about during recovery. Except for a brief minute after I woke up in recovery when I felt that I had been “hit by a Mack truck” everything else was as smooth and painless as can be. I ran 10 mile races after a year (have never run longer than a 5k before that) and did spin classes and aerobics until recently when Covid shut it all down. Nothing to be afraid of. Hope this and others’ comments help.

 

[CarolM]

Can only echo what others have said: the emotional wait/anticipation/what-ifs, are much worse than the surgery itself. My 1st surgery at 58, 2nd at 65, were uneventful procedures. I highly recommend cardiac rehab for peace of mind afterwards. I have not needed additional hospital or doctor visits. Covid stopped my gym visits, but I still do 10K steps each day. Life goes on surprisingly well! Best of luck to you!

 

[SLV]

I was 46 when I had my Aortic Valve replaced and had an Aorta repair. I had a congenital bicuspid Aortic vale. My son was 5. I discovered this surgery was pretty commonplace despite it being terrifying to me. Had a few glitches with fluid developing around the heart and an Afib scare. I discovered I had more energy after. I had been compensating on less for so long ( It’s hard for a Mom with young kids to distinguish between normal fatigue and fatigue from a dysfunctional heart) I gradually started doing activities I never thought I could do - like running track meets. Best of all I am still around - my Son is 22 and I have a grandson to enjoy and spoil.

 

[Pat Heaney]

Hi. I am a 45 year old man. On December 6, 2019 I underwent aortic valve replacement with an ascending aortic aneurysm graft. They gave me an On-x. I am typing this today after cross country skiing 25k-7k pulling my 2 year old son on a sled. The future is NOT all hospital visits. Yes, there is rehab and potentially warfarin, which in my case has not been an issue (I’m drinking beer while writing this). But you will be fine. Keep the faith, man!

 

[caro]

I felt exactly the same way before my surgery. My surgery was February of 2020. I was also asymptomatic. Before surgery, I told myself that my surgeon does the same surgery every day, that it’s good this is a problem I know about it before it worsens and that any new valve will be better than what I have. Of course, I really wanted to keep my valve. Turns out I had a unicuspid valve that was severely calcified. I am now so grateful it is gone. I didn’t end up doing cardio rehab because of covid shutdown and I monitor my INR with a meter at home. I call it in once a week. I feel better than ever. I’m very active. I plan on traveling a LOT more than I used to (once it safe to do so). Since March, I’ve only worried about getting covid. I don’t worry about the valve anymore. This surgery will be behind you soon.

 

[elMIguel]

You mirror my own thoughts Janner. A crisis in confidence indeed. I went from feeling strong, confident and in control to the opposite in a day. Fear of not being around for my wife and daughter. Fear of being a fragile and perpetual "patient". Finding this board and reading all the survivor (make that thriver) stories gives me some hope. This time last month I was blissfully unaware of my condition. Since my diagnosis, I've been in a dark place with the sword of Damocles seemingly dangling overhead. I've had more medical intervention in the past two weeks that I've had in my whole life. I'd rather not be dealing with this, but then again, what choice do I have? Thank you all for sharing and helping those new to the experience.

 

[Pete81]

You mirror my own thoughts Janner. A crisis in confidence indeed. I went from feeling strong, confident and in control to the opposite in a day. Fear of not being around for my wife and daughter. Fear of being a fragile and perpetual "patient". Finding this board and reading all the survivor (make that thriver) stories gives me some hope. This time last month I was blissfully unaware of my condition. Since my diagnosis, I've been in a dark place with the sword of Damocles seemingly dangling overhead. I've had more medical intervention in the past two weeks that I've had in my whole life. I'd rather not be dealing with this, but then again, what choice do I have? Thank you all for sharing and helping those new to the experience.

Hi Miguel, good you are here! I can really relate to what you write, had exactly those feelings, even after my surgery for a while, sought counseling fir that. Now I can tell you that you will start to feel and be strong again in every sense and you will see that as that happens you will start to notice that the things you read here also count for you; for example there will be no probleem for you looking after your family and kids, being there for them. Something that always makes me happy: My oldest is now four weighing 45lbs and she just wants her dad to throw her high up in the air and catch her again, so that’s what I do because I can, again and again, nothing fragile patient there ;-)