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56 and asymptomatic and in shock!

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elMIguel

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I’m consulting with a surgeon at UT Southwestern on Monday and am interested in hearing about anyone else’s experiences with mini-thoractomy (or anything that can help me deal with the overwhelming anxiety of it all). Feel free to refer me to another thread if appropriate.
 

dick0236

Eat the elephant one bite at a time
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Welcome to the forum. You seem to be doing everything "by the book" so far. Consult with your docs in order that you can understand the options of fixing your problem and then "git 'er dun". OHS(Open Heart Surgery) has been around for several generations with an increasing array of solutions. Your profile seems to indicate that you are a mental health professional.....so maybe you are having difficulty seeing the forest for all the trees. The "plusses" of fixing your problem far outweigh the "negatives".
 

elMIguel

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Thank so much Dick and thank you for affirming that I am on the right track. You are definitely right about the seeing the forest for the trees! I'll get information more specific to my case when I have my surgical consult on Monday, but in the meantime can you or anyone help me understand the mortality risk of a AVR. That's been a huge mental hurdle to clear. It rattles in the front of my mind with everything I do. I think, "Is this that last month I'll see my daughter sing, have a meal with my family, drive to work, etc, etc.?". I'm semi-confident that I'll be able to recovery well, but I struggle with the thought of the surgery.
 

dornole

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When my kids and teens face something tough and declare they are going to DIE, I always say "Well yeah, but hopefully not today."

You have probably decades more of "hopefully not today" being granted to you through the miracle of surgery. The way I look at it, we are all going, death is the default condition. Long life is a gift. Approaching this surgery with a deep hope of dodging the bullet for a little while longer will probably put you in a more peaceful state of mind.

You may surprise yourself how you react emotionally when it comes right down to it. For me, right before surgery I felt a strong, tangible wave of reassurance that everything would be okay for me and my family, regardless of whether I lived or died. It was like a religious experience. And afterward in the ICU so much exultation and gratitude. "Yee-haw I'm still alive!!" For about a year afterward, I had a scar on my neck from a monitoring device they installed during and post surgery. I would press it as a "gratitude button" and experience that all over again. I have a constant reminder in my twins who were born that same time 18 years ago and who I got to see grow up. I will admit that of course I've experienced fear and anxiety too at the thought of new surgery but I try to get back to that emotional place that just sort of happened way back then. I hope you find some nugget from my experiences that's helpful.
 

rich01

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I’m consulting with a surgeon at UT Southwestern on Monday and am interested in hearing about anyone else’s experiences with mini-thoractomy (or anything that can help me deal with the overwhelming anxiety of it all). Feel free to refer me to another thread if appropriate.
Easier said than done, but worrying or being anxious will not change anything. Find a surgeon you trust and put it in his hands. If you don't feel comfortable with that surgeon and your insurance allows it, find a different surgeon. Just remember, bedside manner has little to do with his surgical skills.
 

Zoltania

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If you want to know details about people's experiences with the process of surgery, you can find many writeups in the post-surgery forum here (maybe search for the keyword "story"). I spent months before my surgery going back through that archive and learning about people's various experiences. Some of the details were useful to know, and it was comforting to see that most people found their experience to be challenging but not terrible. My own post is in there too.

It sounds like you are grappling more with emotion than with the need for information, though. Intellectually you probably already know that the success rate for these surgeries is very high, especially for people who are in good shape to begin with. Valve surgery is a very well known procedure and surgeons just keep getting better at it.

Those facts may not convince your emotional side, though. That may require a different set of coping techniques. Different things work for different people. You have already taken a big step by consulting with the people on this forum. You will get lots of good advice here. Keep asking questions!
 

pellicle

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Hi


... am interested in hearing about anyone else’s experiences with mini-thoractomy
I can't offer much there, but just wanted to say welcome aboard.
However ...
(or anything that can help me deal with the overwhelming anxiety of it all).
myself I've always turned to reading the thoughts of the stoics (roman and greek)

I think this is a good introduction to the concepts

Best Wishes
 

elMIguel

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Pellicle,
Would you believe that I have a copy of Meditations and The Daily Stoic on my nightstand? I started reading them before bedtime starting early last year but drifted away. You are right. Time to pick them up again.
 

bizinsider

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Jun 27, 2016
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San Diego, CA
Just found out I have "critical" aortic stenosis and must have replacement in a month. Anyone else like me out there? I have always worked out and apparently my body compensated. Still walk 3 miles a day with ease and work fulltime. Anyone else with experience like mine? How was your recovery? Only found because I was going to have back surgery and have a murmur. My cardiologist said he has never seen anyone with this bad of a level of stenosis without any symptoms
Hi there,

When I had my surgery at the age of 67 last March I considered myself asymptomatic with a stenotic bicuspid aortic valve. I also needed a new aortic root, partial ascending aorta and a single bypass. (The latter was discovered in the pre-surgical angiogram, which is mandatory.) Like you, I walked around 3 miles a day in a hilly area - pretty fast - and was in good physical shape. I continued ambitious exercise until almost the day of surgery. Surgery showed I had a unicuspid valve, which surprised everybody, including the surgeon, and that - like you - my body had compensated by enlarging my heart.

Fast-forward: I'm no 68, I feel great. I walk faster than pre-surgery, and now do 4-5 miles 5-7 days a week. The difference is that I have considerably more reserve energy. Usually, I'd slow down (citing boredom) toward the end. Now I sometimes speed up. It's crazy. A lot of people who thought they were asymptomatic, in retrospect, really were - just not like some folks who can't walk across the living room, or tire easily.

I had a full sternotomy, but that is because they did so much under the hood. In my situation, it wasn't a big deal. It healed quickly and if there wasn't a scar I wouldn't know anything was done.

My bottom line: All of your good exercise will pay off in recovery. You will likely be surprised. Critically important is a good, positive attitude going in. It will serve you well. Have a sense of curiosity. Remember that this is the day job for the surgeons. For you, hopefully, a once-in-a-lifetime event - all on the journey known as life. Get more than one opinion, if you can. And...ASK QUESTIONS.

You're among the lucky who found you had an issue before it found you. (That's how I felt when they said I needed a single bypass of an 80% non-critical artery that likely would have caused angina or an outright non-life-threatening but heart-damaging heart attack.)

Never forget, we're like cars. The older we get, the more parts we need repaired and/or replaced.

Cheers.

Best of luck!
 

FishnFool

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Nov 11, 2020
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Just found out I have "critical" aortic stenosis and must have replacement in a month. Anyone else like me out there? I have always worked out and apparently my body compensated. Still walk 3 miles a day with ease and work fulltime. Anyone else with experience like mine? How was your recovery? Only found because I was going to have back surgery and have a murmur. My cardiologist said he has never seen anyone with this bad of a level of stenosis without any symptoms
I had a similar situation last year. I am 55 I walked 3 miles a day 5 days a week and lived a very active lifestyle. I was told I had a murmur and I needed to see a cardiologist. After the appointment and tests my Dr said I need surgery.

Nov 19 2020 I had AVR. 8 weeks post op and I work out almost daily, back to my 3 mile walks and feel stronger and lighter than I have in years. Trust your gut, do your research and use this board its a lifesaver for anxiety.

I had to write a new will and make videos for all my loved ones in case the worse thing happened. This was hard and scary for me. Post-op went smooth after the first 24 hours (Which were miserable for me, but I fought through it.) I never would have guessed how good I could feel. Hang in there, you will get through this!
 

caro

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Hi, @elMIguel ! I had a mini-thoracotomy at age of 30 last February at Cleveland Clinic. If the surgeon feels you are a candidate for mini-thor, it is certainly worth considering. I think they usually do a CT and/or coronary angiogram to determine it. They did a CT with me to determine if I could have a mini-thor. Surgeon mentioned that if I had been older, they would have done a coronary angiogram. No idea why.

I wanted what the surgeon thought was best for me. The surgeon had a lot of experience doing mini-thors so I felt very comfortable with him doing it. The surgery took less than an hour. After surgery, the most pain I felt was from the drainage tube in my abdominal region (don't do a ton of crunches before surgery like I did with the hope you'll be able to get out of the hospital bed easier after surgery... I think less abs may equal less pain 😅). Had my yearly echo a couple weeks ago and everything is still in the right place.
 
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elMIguel

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Hi caro. Yes, I'm scheduled to have a minithoracotomy on the 17th. I had my angiogram done last week and will be having a CT scan the day before surgery. I hope nothing shows up on the CT scan that will alter those plans. My understanding is that the angiogram is done to see if any bypass work needs to be done while they're in there. Fortunately, my results show I'm clear.

Funny about your pre-surgical ab work. Talk about unintended consequences :)
 
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Woodcutter

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Oct 25, 2020
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I can share a couple of my experiences as I had a mitral repair done between the ribs followed by a replacement 6 months later with the full opening. I was 50 at the time ( 8 years ago). Relatively fit . . an avid runner. Firstly I'll share that if your picture is your friend, my wife has a collection! Currently have 3 and she does all sorts of agility and barn hunt competitions with them. They are all rescue dogs.

As for the surgeries, for me, the minimally invasive was a bit easier but only slightly. I recall that I was out moving logs with my tractor after a week at home. After the full replacement I know that I did my first 100 yd jog at 3 weeks. (I am not recommending anything! just comparing myself against myself. I do believe that the more fit you are the easier the recovery.) I am retired now but at the time had a desk job that could largely be done from home and in both cases was able to 'work' at home 10-15 hours in week 2.

As many others have noted, tube/wire removal was a painful memory . . . both times. Overall for me, the most difficult 'pain' for me with the mini was in my back. In accessing through the ribs, there will be a little prying to make a little more space and I felt that in my back rib for 6 weeks. There is also more activity through the groin and I had a hematoma for about that length of time. A funny: at a 2 week follow-up the hematoma was scanned (ultrasound) because I was certain it was growing due to a leak. I was right and wrong. It was not growing. I thought it was growing because I had about 20 lb of water gain during the surgery. I am not large and was losing 1 lb/day. What I thought was the hematoma growing was actually the result of me shrinking back to normal!

Anybody who has had their sternum split remembers the 'fun' learning how to move while that heals. The mini avoids all of that. Definitely smaller scars. Different hospitals/surgeons for my two procedures. No weight gain for my second. I actually remember being bothered that they would not let me drink because they did not want a weight change.

In both cases I did need to sleep in a recliner for a few weeks. Interestingly, before surgery I was a side sleeper. Ever since I am a back sleeper.

Overall, of course it is not a fun and entertaining experience (sarcasm intended); but as often stated here, it solves a problem without which, we would no longer have problems in need of solving! As I understand it, 100,000 valves /year and we all after just a few weeks/months are largely back to normal with memories/stories to share.
 

elMIguel

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As I understand it, 100,000 valves /year and we all after just a few weeks/months are largely back to normal with memories/stories to share.
Amen to that Woodcutter. I’m in this for the long run and will do whatever it take no matter how long it takes to get my ”normal” back.

Regarding my avatar pic, yes, that was my little guy- Klaus. Sadly he died in 2019. I’ve had 4 pugs (all rescues) over they years and they have truly been joys in my life. It was tough losing him and I vowed he was my last. Lately, however, my daughter has been lobbying me for another. Initially I said no. But now, with all that I’m going through (as well as my wife and daughter) I promised her that I would adopt another one after I recover.
 
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