56 and asymptomatic and in shock!

G

Guest

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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
 

pellicle

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I was sitting in a waiting room one day (at the Cardiologists) and spoke to an old bricklayer who was going in for his first. As I was going in for my third I could tell he was anxious. He too (like you) had no indication and was working laying bricks. He was about 60 or so.

You'll be fine and recovery is what it is ... don't let that put you off. Follow directions about lifting and driving (no, I really mean it) and you'll be likely be looking back on this as "what happened? Why did I get stressed??" in 12 months ... probably you'll wonder why you were anxious.
 

DDT77

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Body has amazing ability to compensate for abnormalities. These tend to progress slowly to a point, so body compensates, and if you feel off, often attribute changes to aging. Sitting in waiting room for a few weeks before surgery is not easiest time. I find it easier to get it done with and begin the recovery process. Others around you might have other opinions, of course...
 

tom in MO

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Guest;n886425 said:
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
You are blessed that they found it. Those that are asymptomatic and don't ever know are the ones that die unexpectedly. Make sure you pay attention to any symptoms of heart failure since you are "critical". They can come quick.

I was asymptomatic until the last month but didn't workout. After surgery though, you may find you have more energy because the symptoms you didn't have were there, but they came on so gradually you didn't notice. That's what I experienced.

Which is first back or heart surgery?

Good luck.
 

Suckyvalvegurl

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I am now registered and wanted to thank you for your comments. What kind of surgery did you have and how was the recovery? I am desperate for some real person experiences vs. all the "text book" answers I have found during my research.
 

Paleowoman

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Suckyvalvegurl Hi ! Glad you are now on forum !

I was competely asymptomatic, fit and healthy, prior to aortic valve replacement. I lifted heavy weights (not girlie weights) and walked about six miles per day. I had a sternotomy, surgeon had planned it to be minimal but she couldn't access my aortic valve that way - that didn't bother me, the important thing I felt was for the surgeon to have good access. I chose a tissue valve. Unfortunately I have never got back to the level of fitness and health I had prior to surgery, probably because the replacement valve is too small for my body size so I have what's described as "patient prosthesis mismatch". I now know that in this situation the surgeon could have put the valve in a different position which would have meant a more risky surgery, I don't know if that's why she didn't do it - I'm now under a different cardiac surgeon for whenever the replacement valve needs replacing.
 

pellicle

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Welcome
Suckyvalvegurl;n88644 said:
I am desperate for some real person experiences vs. all the "text book" answers I have found during my research.
plenty to read here on this site:
http://www.valvereplacement.org/foru...ad-to-recovery

http://www.valvereplacement.org/forums/forum/pre-surgery/860356-recovery-advice-for-avr


you will see time and time again
entry: super hyper anxious
exit: I feel better than I imagined
rear vision mirror: what was the problem?

Each story is slightly different with some hiccups and issues. Bottom line is to absolutely follow your recovery directions and in 3 months you'll be 90% back to normal and probably heading towards being better.

Best Wishes
 

Thomas

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Aurora, Ontario, Canada
Hi,
Here's my quick experience:
I'm 57, I was born with a bad mitral valve but it never seemed to inhibit me. I was at my annual physical when my GP sounded the alarm after giving a good listen and within 3 weeks I had a shiny new mechanical mitral valve! I figure it was best that it had to happen really quickly as I think it didn't give me a lot of processing time and therefore stress thinking about it. I was up and around the next day, though not moving quickly. It took a couple of months slowly building strength and endurance.
I've always believed that my bodies warranty ran out at 50 and this was just like doing a rebuild on the motor of a rust free car... well maybe a little rust.
Today is the 1st anniversary of my surgery and other than the ticking and a scar, no one would know. I did a bike ride and a weight workout this morning, shoveled snow and went to work. Life is back to normal.

You will come out of this better and stronger with a little time. Keep a positive attitude and approach it matter of factly. You NEED to do this, period. Appreciate the miracle of modern medicine making this rebuild possible for you and get through it.
 

JLmatus

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Wilkes Barre, PA
I was asymptomatic also until one month prior to surgery being scheduled. I was in good shape. I ran, lifted weights, walked, shoveled snow, etc. I was 60 at the time of the surgery. I chose the ON-X valve. Recovery was pretty uneventful. I am back to doing everything that I did prior to the surgery. Actually, I can do more now than I could before the surgery. Like you, my surgeon told me the morning after the surgery that my valve was one of the worst that he ever worked on. Good luck with everything. The fact that you are in such good shape will really help you during the recovery process. It helped me. I had my surgery in May 2017.
 

pellicle

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congrats on your first year ...

Thomas;n886452 said:
...I've always believed that my bodies warranty ran out at 50 and this was just like doing a rebuild on the motor of a rust free car... well maybe a little rust.
...
You will come out of this better and stronger with a little time. Keep a positive attitude and approach it matter of factly. You NEED to do this, period. Appreciate the miracle of modern medicine making this rebuild possible for you and get through it.
well said

wishing you many more years, I've had 40 since my first (of three)

Best Wishes
 

LondonAndy

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I too was symptom free until about 6 months prior to having the surgery. On the news one day, there was a piece about a dust cloud from the Sahara Desert coming across Europe, picking up pollution as it worked its way to Southern England, and indeed as I did my usual 6 minute walk to my train station for my commute to work, with a dusting of sand visible on parked cars, it was as if someone had flicked a switch, and I could only walk 300 yards or so before feeling breathless. I had to stop for a few minutes and then could carry on normally, but again only for 300 yards each time. Needless to say I thought it was respiratory, because of this pollution, and it was 5 months or so before I got to have an ultrasound test that revealed it was severe aortic stenosis. I ended up having a "cardiac event" at home one Sunday afterwards - to me it felt like I thought a heart attack would be like, though apparently no damage was done to my heart. So I called an ambulance, and after more tests, a week later had the valve op.

In my case, the surgery damaged my heart's electrics, which is I think about a 6% risk or less, given that the heart's electrics are around the valve and not exactly colour coded. So I ended up with a pacemaker a week later too. That has been no big deal either, but in total I spent 25 days in hospital.

I know this is going to sound weird, but I mostly have fond memories of my time in hospital! When they did the angiogram, inserting the probe into an artery in my groin as I lay on a trolley beside the biggest plasma TV screen I had ever seen, there was no pain and I was fascinated to watch the flashes on this TV and see the robotic arm move around me as they presumably took x-rays at different angles and progressed into my heart. At the end of the procedure I said "I enjoyed that - same time next week?" !

Yes, there is discomfort/mild pain when you try to move for the first couple of weeks after they have rummaged in your chest, and I was amazed at how much I urinated out, annoyingly after they had removed the catheter thing. But the medication for pain management is really good, and it is such a routine thing that the whole process is very well managed, resulting in only low levels of pain.

My tip would be to prepare for the recovery period once you get home. I normally sleep on my side, but you can't do that whilst the chest knits itself back together again, and I found an electric recliner wonderful for getting into just the right position to sleep on my back but reclined, moving the chair an inch or two for optimum positioning, and then getting out of the chair was easy by returning to the upright position. You need to maintain excellent standards of hygiene - eg don't share your towels with anyone else, and only use 2 or 3 times before washing them. Don't let visitors touch the wound area, or frankly have any physical contact with you - the last thing you want is either an infection, or a picking up a cold and coughing whilst your chest is repairing itself.

That was over four years ago now, and the only things to deal with are annual checkups for the valve, separate annual checkups for the pacemaker, and weekly testing of my blood INR using a hand held finger prick meter at home to make sure I am taking the right amount of Warfarin. In fact it is time for me to do this week's test now
 

dick0236

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Suckyvalvegurl;n886446 said:
What kind of surgery did you have and how was the recovery? I am desperate for some real person experiences vs. all the "text book" answers I have found during my research.
I had my surgery at 31 years old for severe aortic stenosis.....few, if any, symptoms. I still have that valve with no further valve issues or restrictions on my life and lifestyle. I am now 83 years old and have outlived the 50 year design life of my valve. Unfortunately, the "plain ole" issues of senior age are catching up with me. If you are like most of us you will come thru a valve surgery just fine and can look forward to many years of near normal life.
 

ForeverThankful

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I was also taken by surprise. At my annual physical my doctor of 30 years told me that the slight murmur that I've had all my life, so slight that most doctors couldn't even hear it, was rather loud and so she sent me for an echo. After getting the results she sent me to a surgeon, I had surgery 8 weeks later. I felt at the time that I was asymptomatic, but after the surgery I realized I actually felt better.

I had a sternotomy to replace a bicuspid aortic valve with a mechanical valve and to repair an aneurysm. The aneurysm was large and the surgery took 10 hours. I wasn't told, like some of you, that my valve was one of the worst however I was told that my aneurysm was one of the worst/largest they had seen. They found out when i had the angiogram the night before surgery that the aneurysm was much bigger than the echo showed.

I will say that I didn't really have any pain after the surgery which is a good thing because I had a bad reaction to some initial pain killers they gave me when I first woke up from surgery. The surgeon and cardiologist decided then that I wouldn't be getting any more pain killers after that. But I'm happy to report I did fine with just a few Tylenol.

The thing that struck me rather than pain was the level of tiredness or more like being exhausted for a few weeks after surgery, especially that first couple of weeks. I remember taking my daily walk and then I'd be exhausted. I think one of the most important things is to rest when you need to and be careful not to rush things. And don't pick anything up.

By about 6 weeks after surgery I felt very good and by about 3 months after surgery I felt pretty much back to normal. My surgery was just over 3 years ago and no one would have any idea that I had open heart surgery and am walking around with a mechanical heart valve. My life is completely back to where it was. Actually I'm probably a little healthier because I use a treadmill or walk almost every day since the surgery.

Keeping a positive attitude will go a long way to helping you with a speedy recovery. There is going to be a certain amount of anxiety, that's natural but I tried to take the whole experience as a challenge and with a sense of humor. I can tell you that the doctors and nurses and staff appreciate a patient with a good attitude and a good sense of humor, it makes them smile and I prefer my medical staff happy when they're working on me!
 

Suckyvalvegurl

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Thank you all so much. That helps incredibly. I don't feel sick at all so it is very strange. I am a side sleeper so I wonder if I need to get a recliner? Any other opinions on that? On Monday I will see a specialist at the University of texas Southwestern who is doing a truly minimally invasive procedure so you don't have to have your chest cracked and go on the bypass machine. Do not know if I will be a candidate or if my insurance will cover, but I will try!

I want my husband to go to work once I am home from the hospital because I don't want him using all his leave. Were any of you able to manage on your own? I am a nurse so i think I can handle it.

Your comments here are so helpful to me. Thank you again.
 

Zoltania

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I'm a side sleeper who had a minimally invasive incision (though the bypass machine was used), and I didn't feel any need for a recliner to sleep. I couldn't sleep on my right side for a few weeks, so I slept mostly on my left side and alternated that with sleeping on my back when my left side got sore.

You probably won't want to be alone for eight hours a day during the first few days home, since you'll need a bit of help with fetching and carrying, but you shouldn't need someone with you constantly. Can your husband or someone else come home at lunchtime?
 

Irishgus

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I was 32, playing rugby, climbing, gym. Healthy as a horse. completely Asymptomatic. and BOOM. A check up led to the news that I needed a replacement pithing a few months. Huge shock but Im still here alive and kicking 5 years later. Happy to help in any way. Stay strong my man. All will be well.
 

SumoRunner

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I did have one episode at age 39, a minor one, but scary nonetheless. It was blamed on a leaky aortic valve, which had been there since I was 10. The cardiologist did regular ultrasounds and EKGs on it every 6 mos thereafter. Finally at age 43 he said it was getting worse and it was time for replacement. I had been a runner for decades. Everything from sprints to half-marathons. I felt nothing different, or odd, or painful, nothing, ever. The surgery was scheduled for several months out. I went back to running after 6 weeks, and over the next 28 years, ran twice as many races as I had previously and just as much distance. Sprints, half-marathons, shot put, triathlons, open water mile swims, pushup competition, you name it. Recently I'm starting to feel different. At 71 I'm beginning to feel old.
 
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