Honest Answers

[KatherineA]

@JannerJohn I had virtually no big symptoms ever. During 2019, I got gradually more tired. But I blamed it on being 69, the dust and unusual heat we had that summer etc. I quit teaching yoga, but still maintained my own practice, a huge vegetable garden, mowing etc. I had no chest pain etc. just no stamina in the garden especially. 2 hours was my max for steady heavier activities


when I went to Cleveland for my appointment Dec 2nd I knew I was way to tired for this checkup to be smooth and them to say come back in six months like usual.

And, they did not say that . They expressed concerns about me even traveling back to West Virginia to wait until surgery could be scheduled. Yikes!

Anyway. Surgery was scheduled and performed Jan 7. I am so glad now it was. I had no complications, some getting used to beta blockers and finding the right meds at home. But that’s it.
I had a big veg garden again in 2020:. Planning a bigger one in 2021

although I did Not seek counseling before surgery. I did after. Which helped a lot. I think after worrying about surgery coming someday for about 5 years I didn’t know how to not worry about a heart valve, I think.

I hope this helps.

 

[dornole]

JannerJohn, you’ve started multiple threads about your anxiety and death forboding. Which is fine, it’s one of the things this forum is for. But it doesn’t seem to be helping you. Everyone gave you Honest Answers before. The odds are strong that this will go just fine for you and you’ll live a normal life. For me I went from coughing up blood to watching my kids grow up and living a full life doing everything I want to do. That’s not a cross to bear, dude, it’s a fricking miracle of science. You’re young and the odds are overwhelming that you will do very well. Your thinking that everyone is lying about the outcomes of surgery is way distorted. If you are still this consumed by anxiety after ALL the evidence put before you, you may need a mental health professional to help you get straightened out. I wish I were one right now.

 

[mecretired]

For approximately 25 years I had annual echoes due to a leaky aortic valve. In January 2010 I was told I had an aneurysm of my ascending aorta. It was already 5.4–large enough that I needed surgery. Yes—I have since learned that the doctor obviously missed the aneurysm in previous echoes. I found another cardiologist, surgeon and hospital. I had OHS on May 3, 2010. I was 58. I have a st Jude grafted aortic valve—it was a 6 hour surgery. I went home a week later. I had no symptoms prior to surgery so it was a big shock. But all went well and I haven’t had any problems since. I’m on warfarin but it’s not the big deal that even medical professionals seem to think it is. If you have a cardiologist, a surgeon and a hospital you trust, leave it in their hands. They will take care of you.

 

[AZ Don]

As scary as the surgery was, I was thankful that I had something that could be fixed. Having just survived a cancer scare, fortunately caught early and led to finding my BAV and aortic aneurysm, I was well aware that there are diagnoses with a much worse prognosis. That was almost 8 years ago now and for me the worst part was the month and a half or so between diagnosis and surgery. Certainly worse than the surgery and recovery. My knee surgery was more difficult and more painful for me than my open heart surgery.

 

[bizinsider]

John, +1 to everything Katherine and Pellicle said. When I thought about surgery when I was in my 40s and 50s, it freaked me out, too. At some point in my 60s (I think it was during an echo) I had an amazing feeling come over me - it was an acceptance that this was going to happen. From that point on, I had no fear. It's a mind game, and remember the this is the day job for these surgeons. Key is to get yourself to a great surgeon at a facility where they do these in their sleep. (Well, you know what I mean.)

John, you are ridiculously young. Assuming you are in halfway decent shape, you will be fine, surprisingly so. My valve, root and ascending aorta replacement was 50 weeks ago when I was 67. I had a full sternotomy. They also saved me a future heart attack by repairing a blocked artery nobody (even a stress test) didn't know I had.

If it wasn't for the fading scar, I'd never know anything was done. Plus, while I thought I was asymptomatic I have more energy than ever, with this crazy reserve power while exercising. I have NO idea where that came from. Stay active on these forums and others. Unless it freaks you out, start studying up on it. Research studies. Anything/everything.

There are some very good educational videos by surgeons on the Cleveland Clinics website under each surgeon's name, notably Roselli, Johnston and Svensson. I'd go through as many as you can. As you can see, you get a lot of support here. We've all been there, done that and will cheer you on. And...we all survived!!!! Pretty much everybody does. The odds are remarkably on your side, and the human body's ability to heal is beyond phenomenal.

 

[BasinBoy25]

Hi JannerJohn--

I am sorry to hear of you heart and anxiety issues, but want to send you a shout out from the other side of the surgical experience--alive and kicking as Simple Minds used to sing. Our stories sound eerily similar. I was 49 when out of the blue my primary doctor heard a murmur, and six months later and I too my aortic valve and aorta replaced. I had no symptoms and felt fine. Was hitting the gym 5 or 6 days a week, working full time, and the sole care provider for two aging 80+ year old parents. I totally relate to the experience of having your whole reality turned upside down. I had never spent a night in the hospital since birth. But apparently had this condition since birth--rats!

I really suffered with what I guess you would call anxiety and depression after the diagnosis to. To aid in that regard I researched the procedures on line and found great information at JAMA, society of thoracic surgeons, Cleveland clinic, my location healthcare company's website (IHC), and many, many others. Understanding how successful and routine the procedure is was quite reassuring. There is some kind of statistic model that one surgeon ran my data through and the survival rate was something like 99.5% for me. The alternative was to do nothing and the survival rate was abysmal. He said the hardest thing the surgeons had to do was convince asymptomatic "young" (apparently 50 is young in the heart fixing arena) to have the procedure done. Since I felt fine and could do anything and everything I wanted, it was almost impossible to grasp that I need to have open heart surgery. But like you said, the imaging test clearly showed that my heart was over compensating for the insufficiency, the valve was bi-cupid and didn't close, and the aorta was getting to large.

Have you thought about a second opinion? Not that the second option will change your need for surgery, but I found great comfort in going to two different medical groups and getting the same advise, direction, and reassurance. They even had people I could talk to that had already gone through the same procedures to talk to--there is nothing like talking and chatting with someone who has literally walked the same path and can cheer you on!

I REALLY want to reassure you that this procedure is completely survivable and THRIVABLE. I came out of surgery around 11 a.m. Monday and was walking to the recovery floor from ICU the next morning at 8 because they wanted my ICU room for the next patient. They were giving offering things to drink and saltine crackers to eat the night of surgery and ordering food off the menu the next day.

The thing I guess I wish I would have understood better before the surgical experience--that in hindsight would have helped a lot with the worry issues--is the protocols and plans they have in place for recovery. In my mind I sort of thought I would just lie there clinging to life hearing the beep, beep, beep for the heart monitor in the back ground. Not that way at all. They have you up and walking, showering, eating, physical therapy, respiratory therapy, occupational therapy, emotional support, religious services, right away--like in the next day. There will also be cardiac rehab once you are discharged to help in the weeks and months ahead to guide you on your recovery.

It definitely isn't a trip to the spa, but like someone else noted earlier, I was only on Tylenol for the pain by day two. I think you said you have younger children, the only problem you may face is that hugging them (unless very, very, gently) will be probably off limits for a week and picking them up in your arms will be a no-no until the chest bones heal--probably 4-6 weeks. However, they can be great helps in holding your hand and giving gentle back rubs!

I have rambled on to long now. But remember that I will gladly share and re-assure anyway I can. I am living proof that this type of surgery is completely and entirely doable. I had my one year check-up with my cardiologist and he wants me doing more--the stupid COVID 15 hasn't helped my waist-line any. You can do this and please reach out with any questions. Keep well and prepare for the best (not worst)!

 

[Chuck C]

JannerJohn, You and I have experienced much the same in regard to pending OHS. I'm roughly your age (55), great family, daughter about to graduate, great job and great health (or so I thought 2 months ago). Then I got hit with my diagnosis of AVS. My surgery was supposed to be this week but has been postponed due to the winter storm that has hit my state.

Since I'm on the same side of this as you, I'm not sure I have much to offer other than this... I think our odds are good. I base this on my research, consultation with my surgeon and cardiologist, and reading many of the recovery stories posted on this site. I have many of the same fears as you (and probably a few extra). I wish I (or my family) didn't have to deal with this, but we do. My confidence still ebbs and flows throughout the day but I'm ready to start recovering. I'm ready to start living again because these past 2 months have been miserable.

I feel much the way you do. My surgery is 3 weeks out and I am really ready to get on with it and get going on my recovery. I feel this is probably one of the most difficult times in some ways - the waiting, a bit of anxiety and planning out the recovery process. But, I am very much looking forward to waking up in the recovery room and taking on each day of recovery. Ready to get on with it. I kind of wish it was happening sooner.

 

[bizinsider]

I feel much the way you do. My surgery is 3 weeks out and I am really ready to get on with it and get going on my recovery. I feel this is probably one of the most difficult times in some ways - the waiting, a bit of anxiety and planning out the recovery process. But, I am very much looking forward to waking up in the recovery room and taking on each day of recovery. Ready to get on with it. I kind of wish it was happening sooner.

Chuck, you have no idea how well that attitude is going to serve. Throw a little humor in there and you should sail thru. Keep it real, respect the risks, know that it might not be a straight line (I had a complication caused by an incidental finding post-surgery) and just roll with it. After all, nothing else you can do!

 

[newarrior]

Your feelings are very common and if the truth be known, we all had those feelings........which, for the most part, didn't materialize. The six inches between our ears is one of the biggest hurdles to overcome.........but if you educate yourself on forums like this one you will find that your fears are pretty much unfounded. You are much more likely to see your kids and grandkids grow up if you have surgery than if you don't have surgery.

Great response but as an aside some of us don't have kids, grandkids or even a partner or even much reasons to live or to carry on (I am speaking for myself only) and I wonder if it's worth suffering through pre op, op and post op or just to better let the valve disease take it's natural course and let it end my life as opposed to all the hassles of valve replacement...Food for thought..

 

[Chuck C]

" know that it might not be a straight line (I had a complication caused by an incidental finding post-surgery) and just roll with it. After all, nothing else you can do! "
That is so true. There is nothing else we can do, so best to just accept it and move on. Like you, I did not have a straight line but did my homework and had 100% confidence in the surgeon that I had chosen. It turned out I was critical when he looked at the valve, so waiting too much longer could have been fatal. Just have to roll with it. So glad it is done and each day is a blessing filled with some improvement.

 

[newarrior]

" know that it might not be a straight line (I had a complication caused by an incidental finding post-surgery) and just roll with it. After all, nothing else you can do! "
That is so true. There is nothing else we can do, so best to just accept it and move on. Like you, I did not have a straight line but did my homework and had 100% confidence in the surgeon that I had chosen. It turned out I was critical when he looked at the valve, so waiting too much longer could have been fatal. Just have to roll with it. So glad it is done and each day is a blessing filled with some improvement.

chuck are you saying that your valve was actually critical and not just servere ? How did they not know that? I would think that have shown up on an echo or other test? I'm considered to be at moderate as of last year or mild moderate in 2019 to early 2020 but I'm wondering if I'm getting close to severe. And I'm overseas and Id have to start all over in America or pay cash here.. I'm worried about where to live plus I've got nobody to take care of me. I'm going to go see my own heart doctor tomorrow and see if we can reassess the condition of my valves. Your situation is is scaring me. I'm having a lot of weird symptoms that make me think my valve is farther along in it's disease than the Echoes and stress test and MRIs and other things are showing.

 

[Chuck C]

chuck are you saying that your valve was actually critical and not just serve ? How did they not know that? I would think that have shown up on an echo or other test? I'm considered to be at moderate as of last year or mild moderate in 2019 to early 2020 but I'm wondering if I'm getting close to severe. And I'm overseas and Id have to start all over in America or pay cash here.. I'm worried about where to live plus I've got nobody to take care of me. I'm going to go see my own heart doctor tomorrow and see if we can reassess the condition of my valves. Your situation is is scaring me. I'm having a lot of weird symptoms that make me think my valve is farther along in it's disease than the Echoes and stress test and MRIs and other things are showing.

Hi Newarrior.
Critical is worse than severe and when he said it, he meant that it was critical, as in, worse than severe. He showed me the photos. He commented that the echos just give an estimate, but showing me the photos, pointed out that what we were looking at was the actual condition. It could have been that the echo was overestimated the valve area or that it had been narrowing rapidly, even progressing significantly in the previous 6 weeks.
I think that worrying about your valve is doing you more harm than anything else. Your echos show that you are safely in the moderate range. You are doing the right thing in getting follow ups every 6 months. Keep doing that consistently and try not to worry that it might be overestimating the AVA. You have had several echos done and they all say moderate, with slower than average progression. You have been good about getting things checked out when you have concerns. All we can do is live life and make the important decisions when we need to make them. Worrying about those decision before we need to make them can cause unnecessary stress and keep us from enjoying every day that we have.

 

[newarrior]

Hi Newarrior.
Critical is worse than severe and when he said it, he meant that it was critical, as in, worse than severe. He showed me the photos. He commented that the echos just give an estimate, but showing me the photos, pointed out that what we were looking at was the actual condition. It could have been that the echo was overestimated the valve area or that it had been narrowing rapidly, even progressing significantly in the previous 6 weeks.
I think that worrying about your valve is doing you more harm than anything else. Your echos show that you are safely in the moderate range. You are doing the right thing in getting follow ups every 6 months. Keep doing that consistently and try not to worry that it might be overestimating the AVA. You have had several echos done and they all say moderate, with slower than average progression. You have been good about getting things checked out when you have concerns. All we can do is live life and make the important decisions when we need to make them. Worrying about those decision before we need to make them can cause unnecessary stress and keep us from enjoying every day that we have.

Chuck...Thanks...I've also had the valve checked via stress echoes and MRI and all seems to be well...Ditto for mitral and heart as well.. By the way new labs came..Ultra low triglycerides, blood pressure stabilizing, LDL 51, total Chol 94...Lp(a) just moved up a point..Am still looking at options to lower Lp(a); thanks for pushing me in that direction) I am working with some mental health pros on anxiety and depression and started a new 4 weeks ago. Good luck to you man..) Yes i am worried about it all; where to live; where to buy a home, coumadin, post op, post op alone, finding a partner, etc etc

 

[newarrior]

Hi JannerJohn--

I am sorry to hear of you heart and anxiety issues, but want to send you a shout out from the other side of the surgical experience--alive and kicking as Simple Minds used to sing. Our stories sound eerily similar. I was 49 when out of the blue my primary doctor heard a murmur, and six months later and I too my aortic valve and aorta replaced. I had no symptoms and felt fine. Was hitting the gym 5 or 6 days a week, working full time, and the sole care provider for two aging 80+ year old parents. I totally relate to the experience of having your whole reality turned upside down. I had never spent a night in the hospital since birth. But apparently had this condition since birth--rats!

I really suffered with what I guess you would call anxiety and depression after the diagnosis to. To aid in that regard I researched the procedures on line and found great information at JAMA, society of thoracic surgeons, Cleveland clinic, my location healthcare company's website (IHC), and many, many others. Understanding how successful and routine the procedure is was quite reassuring. There is some kind of statistic model that one surgeon ran my data through and the survival rate was something like 99.5% for me. The alternative was to do nothing and the survival rate was abysmal. He said the hardest thing the surgeons had to do was convince asymptomatic "young" (apparently 50 is young in the heart fixing arena) to have the procedure done. Since I felt fine and could do anything and everything I wanted, it was almost impossible to grasp that I need to have open heart surgery. But like you said, the imaging test clearly showed that my heart was over compensating for the insufficiency, the valve was bi-cupid and didn't close, and the aorta was getting to large.

Have you thought about a second opinion? Not that the second option will change your need for surgery, but I found great comfort in going to two different medical groups and getting the same advise, direction, and reassurance. They even had people I could talk to that had already gone through the same procedures to talk to--there is nothing like talking and chatting with someone who has literally walked the same path and can cheer you on!

I REALLY want to reassure you that this procedure is completely survivable and THRIVABLE. I came out of surgery around 11 a.m. Monday and was walking to the recovery floor from ICU the next morning at 8 because they wanted my ICU room for the next patient. They were giving offering things to drink and saltine crackers to eat the night of surgery and ordering food off the menu the next day.

The thing I guess I wish I would have understood better before the surgical experience--that in hindsight would have helped a lot with the worry issues--is the protocols and plans they have in place for recovery. In my mind I sort of thought I would just lie there clinging to life hearing the beep, beep, beep for the heart monitor in the back ground. Not that way at all. They have you up and walking, showering, eating, physical therapy, respiratory therapy, occupational therapy, emotional support, religious services, right away--like in the next day. There will also be cardiac rehab once you are discharged to help in the weeks and months ahead to guide you on your recovery.

It definitely isn't a trip to the spa, but like someone else noted earlier, I was only on Tylenol for the pain by day two. I think you said you have younger children, the only problem you may face is that hugging them (unless very, very, gently) will be probably off limits for a week and picking them up in your arms will be a no-no until the chest bones heal--probably 4-6 weeks. However, they can be great helps in holding your hand and giving gentle back rubs!

I have rambled on to long now. But remember that I will gladly share and re-assure anyway I can. I am living proof that this type of surgery is completely and entirely doable. I had my one year check-up with my cardiologist and he wants me doing more--the stupid COVID 15 hasn't helped my waist-line any. You can do this and please reach out with any questions. Keep well and prepare for the best (not worst)!

Good to hear ..My concern is no family to live for or assist me post op and no cardiac insurance to cover any of the cost

 

[newarrior]

Good to hear ..My concern is no family to live for or assist me post op and no cardiac insurance to cover any of the cost

How the hell do you get through the surgery if you've got no family nobody to take care of you? What if you're facing a situation like my own where you may be forced to move back to America after living overseas for a while it's a gut-wrenching choice and facing it 58 I guess I put myself in this situation. I had no idea when I move to Asia four years ago I'd have a heart problem it was not going to be diagnosed until after I got here that was going to pop up as a pre-existing condition and wouldn't be covered by insurance

 

[dornole]

I'm considered to be at moderate as of last year or mild moderate in 2019 to early 2020 but
I'm wondering if I'm getting close to severe”.

I’ve been moderate to mod severe for 18 years now and doc says I may never need another intervention. I wonder if you are not getting way ahead of yourself with your worries about this. Ruminating and it’s not good for you. there doesn’t seem to be anything anyone can say to put you more at ease.

 

[Superman]

How the hell do you get through the surgery if you've got no family nobody to take care of you? What if you're facing a situation like my own where you may be forced to move back to America after living overseas for a while it's a gut-wrenching choice and facing it 58 I guess I put myself in this situation. I had no idea when I move to Asia four years ago I'd have a heart problem it was not going to be diagnosed until after I got here that was going to pop up as a pre-existing condition and wouldn't be covered by insurance

They don’t send you home if you can’t do tasks of basic living. Getting cleaned up. Getting food. Getting dressed. You’ve said yourself you’ve got ready access to public transportation.

You’re not in a wheelchair drooling on yourself wearing diapers when you’re done. Look how good Chuck C is doing. He’s not even left the hospital yet and he’s posting clear headed with positive energy. A couple kinks to sort out, but he’ll be heading home soon.

 

[Chuck C]

They don’t send you home if you can’t do tasks of basic living. Getting cleaned up. Getting food. Getting dressed. You’ve said yourself you’ve got ready access to public transportation.

You’re not in a wheelchair drooling on yourself wearing diapers when you’re done. Look how good Chuck C is doing. He’s not even left the hospital yet and he’s posting clear headed with positive energy. A couple kinks to sort out, but he’ll be heading home soon.

I can tell you that if I left right now, I would be able to take care of myself just fine. I even feel like I could drive, but I will follow the rules on this one as the last thing I want is to delay the healing process by pushing too hard. I certainly won't be doing any exercises other than brisk walking and some gentle movement. But, I feel like I could . If I was single and had public transportation, I can't think of anything that would be a problem right now and I am just 5 days out from surgery. Others may not repair as quickly, but I would imagine that unless someone is going in in really bad shape, it would be similar recovery for most. The point being, I don't think it is worthwhile stressing out over who will be taking care of a person when they get out. 1) my sense based on how I feel and how others have described how they felt, is that most get around pretty good by the time they get out. 2) There are easy solutions to this issue if a person really needs someone to care for them- hire someone to help them.

 

[pellicle]

I would be able to take care of myself just fine.

dunno why, but the trailer scene from The Wrestler comes to mind

 

[Chuck C]

dunno why, but the trailer scene from The Wrestler comes to mind

Haha, trust me, I am not going to screw things up and push too hard. But, my sense is that most things that a person does to take care of themselves will not put their recovery in danger, if they follow the guidelines. I am sure that most hospitals do what UCLA has done for me- an occupational therapist has visited twice to show me how to get out of bed, put on my shirts, pants, socks. Cooking is fine, just don't keep your kitchen stuff up high, ect.
But, your cautions are well noted, as always.