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MONICA.KRYDER

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Hello everyone. I just found out I have moderate aortic stenosis and moderate aortic valve calcification. I just turned 42. I had an echo done because my heart murmur, that I’ve had since my twenties, became much louder. I also had low pressure, dizziness, palpitations, and shortness of breath. I’m a cardiac nurse by background so I know just enough to be terrified. I have a 14 year old daughter and we are very close. I have a loving and supportive husband and none of us are sure how to process this. As I was doing research on valve options for my age I ran across this forum. I felt called to join and learn from others who have experienced this condition. My follow up appointment is in two days. I imagine next steps will be either a stress test, TEE, or a heart cath. Is it crazy that I’m more nervous abt the TEE than anything else?

Thanks for reading.
 

Chuck C

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Dec 5, 2020
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Welcome to the forum Monica.

I’m very sorry to hear about your diagnosis. Having said that, there is some really good news. 1) Your medical team now knows about your condition and can monitor it 2) There is a solution with a very high success rate – aortic valve replacement.

From my own experience, getting my diagnosis at age 52, I felt like my world had just been turned upside down. Like you, my diagnosis was moderate aortic stenosis with moderate aortic valve calcification. As if the valve condition was not enough, mine carried a couple of other diagnosis and it was a lot to take in. But, within a few weeks I had learned a lot about my condition and had accepted that I could not control the hand that I was dealt, only control how I reacted to it.

After monitoring my condition for about 20 months, my time came for surgery. That was about 16 months ago. I’ve now had my aortic valve replaced as well as part of my aorta. It was not a cake walk, but it was also not all that bad from my perspective. Because of my young age of 53, I went with a mechanical valve. Now, 16 months past surgery, life is very normal for me. Just as I was before surgery, I am very physically active. It is easy to forget that I had open heart valve surgery because life feels so normal once again.

Your feelings of being nervous about your condition are normal. Most all of us experienced that to one degree or another. But, there is light at the end of the tunnel. For me, I tried to be grateful for the fact that it was discovered and that I live in an age where modern medicine has an excellent solution for my condition.

I think it was a good step for you to join the forum, so that you can communicate with others who have faced what you are facing. My suggestion would be to educate yourself as best you can about your condition and the choices which you will face down the road. Also, there may come a time where you team tells you that you can get surgery now or wait a little longer. When I was given that choice, I chose to get on with it and get the surgery. I would suggest you do the same if given the choice. One mistake that people sometimes make is waiting too long for fear of the surgery. Waiting too long can lead to irreversible damage. Yours was discovered relatively early, so no need to wait until damage has occurred. Also, take a deep breath and try to relax. Know that your medical team is on top of your condition and that you will get your surgery when it’s time. The vast majority of valve patients return to life as normal and live normal lifespans. Knowing about your condition now and getting surgery when it’s time will stack the deck even further in your favor that you will be among that group.

It is hard to imagine now, but there will be a time when you look back at this current moment and wonder what you were so worried about.

Please feel free to reach out with any questions that you have. There are hundreds of people here who have faced your situation and whatever you are experiencing or feeling, likely someone else here has as well.
 

MONICA.KRYDER

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Wow. Thank you so much for taking the time to respond. This gives me lots of comfort. The part that says you are active and feel normal afterwards is so nice to read. I hope to feel like that too. I appreciate the advice abt surgery now, rather than waiting. I feel the same way. I have a lot of faith in my doctors and cardiac team. I was also a surgical nurse so that gives me a little too much knowledge but also gives me comfort as well.
Now they are checking me for autoimmune disorders trying to figure out why I have this heart valve condition. So fingers crossed that comes back normally. Thanks again for the wonderfully hopeful message. It has certainly brought my anxiety down. :)
 

Chuck C

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Yes, you will feel normal again after surgery and will be able to be as active as you like.

Now they are checking me for autoimmune disorders trying to figure out why I have this heart valve condition.

Most here have aortic stenosis due to having a bicuspid valve. It sounds like your echo has not revealed you as bicuspid.

Make sure to have your Lp(a) checked. Elavated Lp(a) is highly associated with aortic stenosis and is usually overlooked by cardiologists as the culprit. It is a simple inexpensive test. It can be ordered by itself or if you get the advanced lipid panel from Quest Diagnostics, known as CardioIQ, which will include Lp(a). The advanced lipid panel from Labcorp will not include it, however. Please insist on getting this test done, as I've come across several people for whom valve or heart disease at a young age was a mystery until they had their Lp(a) checked.
 

Superman

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Grand Rapids, MI, USA
Welcome to the forum. As far as all the various medical ailments that can strike, you’ve been blessed with one of the easiest to fix. If there’s a silver lining, that’s it.

I’m more of a lifer so can’t really relate to the shock of finding out. It’s all I’ve ever known. I had my valve replaced when I was 17 and an aneurysm repaired at 36. Prior to that, I was followed closely every six months or annually as needed.

Aside from that, I cannot complain about anything. Happily married to the most amazing woman I’ve ever met. We have five awesome kids ages 10-20. My wife and I are about to take a Grand Canyon trip and hike it rim to rim and back again (if that gives you an idea of how limited I feel). I’ll be 50 later this year and my first heart surgery was nearly 32 years ago. And I’ve got over 20 years to go to catch the leader on there’s boards!

You should know that some causes for our situation are genetic and it may be worth it to have your daughter screened. One if my kids is followed by a cardiologist as they have a mild presentation (no murmur yet and he’s 20). Another shows evidence for the gene, but functionally normal. It’s worth at least knowing.

Welcome and feel free to ask any questions. Collectively there are centuries of experience on these boards at your disposal.
 

dornole

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Yeah, not a fan of the TEE and the gagging, but after they realize I can’t tolerate it they medicate me quick and no more problem. : ). My valve damage is likely from rheumatic fever. Not sure what autoimmune issues they’re looking for in you?

I think everyone gave you great insights. Fundamentally yeah, you have a fixable problem. For me I was even able to have a repair. Modern medicine saved me and my twins when I developed severe mitral stenosis while pregnant and I’ve been able to keep on living and watch them grow up for 20 years now. Chances are good you’ll be able to watch your daughter grow fully into adulthood too. The process will suck in the short term but your outlook is good. Bet you know who the best surgeons are too and the most capable nurses. ; ) this group is great about questions so ask away. Fingers crossed you see a clear path forward and can keep your perspective for the most part. Sometimes easier said than done but we all do what we can.
 

dick0236

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Welcome Monica, I think this forum can add some good insight into living with an artificial valve. In a nutshell, it is about the same as living with a natural valve. I've had mine since I was 31 and it has lasted 55 years with few limitations on my life, lifestyle, or diet. As a surgical nurse, you've seen the "sausage being made" which would unnerve most of us but after a short stint in the hospital you should be "good to go" for a normal life.......with only a few minor life changes.
 

Hyp2r

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New Zealand
Hi Monica!
I just wanted to say, I had a TEE about 20 years ago (other than during surgery), and then one in October. It was really uncomfortable back then, but much improved process this time. No need to be nervous!
Welcome!
Hi Monica
I agree fully with Jennie - I had a TEE approx 10 years ago and it was terrible, I gagged and panicked as I couldn’t breathe, my TEE process last year was much improved, no discomfort at all. The heart cath was also so different - no sedation at all for either procedure and no drama.
You’ll be in good hands, no need to worry.
 

Art O Ceitinn

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Neuilly Plaisance
Hi Monica I had my first OHS 56 years ago and had my aorta valve replaced with a St Jude mechanical valve in 2007, so I know how scared it can be facing heart surgery. I had no control over my first surgery as I was a 15 year old child and lived in Ireland with only one hospital with a cardiac care unit. I had 2 heart caths in 1966 but they were performed under a General anesthesia, it was more interesting in 2007 as I got to watch the screen and I was amused when they removed the wire from my groin and some of the team got covered in blood. I never had a TEE. Before my operation in 2007 I researched to find the best cardiac unit in the Paris region and settled for the second best as it was a private hospital less than a mile from where my wife worked. I choose a mechanical valve because I remembered my first OHS and I had a very rough ride. In 2007 it was so much better with proper pain control and I left the hospital after 5 days. I wish you the best good wishes for your future care and to let you know there is a great long life to live after OHS.
 

Brinntache

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Mar 25, 2021
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My wife reached out to a world-renowned heart surgeon before mine, and he said "this is a big deal for you but it is a very routine procedure for the surgeon." He was right, my surgeon knew exactly how long the surgurey would take, what he would find, how it would be dealt with. Recovery takes a bit, but I am just over a year out, exercising, pumping weights, going on adventures. You'll get there.
 

KLS39

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Dec 21, 2021
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Hello everyone. I just found out I have moderate aortic stenosis and moderate aortic valve calcification. I just turned 42. I had an echo done because my heart murmur, that I’ve had since my twenties, became much louder. I also had low pressure, dizziness, palpitations, and shortness of breath. I’m a cardiac nurse by background so I know just enough to be terrified. I have a 14 year old daughter and we are very close. I have a loving and supportive husband and none of us are sure how to process this. As I was doing research on valve options for my age I ran across this forum. I felt called to join and learn from others who have experienced this condition. My follow up appointment is in two days. I imagine next steps will be either a stress test, TEE, or a heart cath. Is it crazy that I’m more nervous abt the TEE than anything else?

Thanks for reading.
Welcome. It is good you found this forum now. I didn't find it until well after my surgery. I would have been more educated if I had found it earlier.
I was diagnosed with a bicuspid valve at 3 and had my first surgery at 14. I've always been monitored but strangely enough when I was younger no one ever said I would need another surgery. I thought I was "cured" for life and they would just keep an eye on me and comment about my heart murmur. It wasn't until I was in my 40's that a cardiologist finally said I would need to have my valve replaced. I had OHS 3/5/2021 at 58 to take care of an aortic aneurysm, replace my aortic valve with a mechanical one and repair my innominate artery which was enlarged. I test my INR at home, am not restricted in any way and feel great.
You will find a lot of great information here that will help you get through this. Keep us posted.
Best wishes.
 

MONICA.KRYDER

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Aug 1, 2022
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5
Hi Monica!
I just wanted to say, I had a TEE about 20 years ago (other than during surgery), and then one in October. It was really uncomfortable back then, but much improved process this time. No need to be nervous!
Welcome!
Thank you for sharing that! I love hearing that the process has improved. I’m actually on my way to my first cardiology appointment appointment now. Wish me luck!
 

MONICA.KRYDER

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Aug 1, 2022
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Hi Monica I had my first OHS 56 years ago and had my aorta valve replaced with a St Jude mechanical valve in 2007, so I know how scared it can be facing heart surgery. I had no control over my first surgery as I was a 15 year old child and lived in Ireland with only one hospital with a cardiac care unit. I had 2 heart caths in 1966 but they were performed under a General anesthesia, it was more interesting in 2007 as I got to watch the screen and I was amused when they removed the wire from my groin and some of the team got covered in blood. I never had a TEE. Before my operation in 2007 I researched to find the best cardiac unit in the Paris region and settled for the second best as it was a private hospital less than a mile from where my wife worked. I choose a mechanical valve because I remembered my first OHS and I had a very rough ride. In 2007 it was so much better with proper pain control and I left the hospital after 5 days. I wish you the best good wishes for your future care and to let you know there is a great long life to live after OHS.
This made me tear up. Thank you for sharing your amazing story! Wow. Gives me inspiration for sure. Thank you a million times.
 

MONICA.KRYDER

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Joined
Aug 1, 2022
Messages
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Welcome. It is good you found this forum now. I didn't find it until well after my surgery. I would have been more educated if I had found it earlier.
I was diagnosed with a bicuspid valve at 3 and had my first surgery at 14. I've always been monitored but strangely enough when I was younger no one ever said I would need another surgery. I thought I was "cured" for life and they would just keep an eye on me and comment about my heart murmur. It wasn't until I was in my 40's that a cardiologist finally said I would need to have my valve replaced. I had OHS 3/5/2021 at 58 to take care of an aortic aneurysm, replace my aortic valve with a mechanical one and repair my innominate artery which was enlarged. I test my INR at home, am not restricted in any way and feel great.
You will find a lot of great information here that will help you get through this. Keep us posted.
Best wishes.
That’s amazing. Especially the “not restricted” part. I hope that’s the case for me too! Thank you for sharing.
 

pellicle

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Nov 4, 2012
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Queensland, OzTrayLeeYa
That’s amazing. Especially the “not restricted” part. I hope that’s the case for me too!
whenever I read things like this I wonder what sort of upsetting misinformation people are fed.

So, there is no basis for any significant restrictions on diet:

In conclusion, the available evidence does not support current advice to modify dietary habits when starting therapy with VKAs. Restriction of dietary vitamin K intake does not seem to be a valid strategy to improve anticoagulation quality with VKAs. It would be, perhaps, more relevant to maintain stable dietary habit, thus avoiding wide changes in the intake of vitamin K. Based on this, until controlled prospective studies provide firm evidence that dietary vitamin K intake interferes with anticoagulation by VKAs, the putative interaction between food and VKAs should be eliminated from international guidelines.

so that's pretty clear. Basically all you need to avoid is Grapefruit juice and perhaps Cranberry. Most (of what I call normal) foods are good including and especially greens.

Next its managing dose and INR. INR testing is best done yourself with a Roche Coaguchek and managing yoruself is the easiest too. Get into a good relationship with your GP then you can do that. I've been travelling a lot (between Australia and Finland and other places) since using my Roche Coaguchek and its meant I don't need to think about labs, because its in my toiletry bag.

Aside from that you're just like a regular person :)

Like me :)
 
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tom in MO

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Jan 17, 2012
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I was in the same boat and a TEE and a stress test was not part of the workup just a heart cath about a week before schedule surgery.
 

ejc61

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Jun 24, 2010
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291
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Atlanta, GA
Hello everyone. I just found out I have moderate aortic stenosis and moderate aortic valve calcification. I just turned 42. I had an echo done because my heart murmur, that I’ve had since my twenties, became much louder. I also had low pressure, dizziness, palpitations, and shortness of breath. I’m a cardiac nurse by background so I know just enough to be terrified. I have a 14 year old daughter and we are very close. I have a loving and supportive husband and none of us are sure how to process this. As I was doing research on valve options for my age I ran across this forum. I felt called to join and learn from others who have experienced this condition. My follow up appointment is in two days. I imagine next steps will be either a stress test, TEE, or a heart cath. Is it crazy that I’m more nervous abt the TEE than anything else?

Thanks for reading.
My first TEE 13 years ago was a nervous experience and I was given some kind of sedation so that I didn't remember it. I had 3 subsequent TEE's and was possibly more relaxed, although the situation was more critical, so I felt less sedated and did fine. In fact I was able to stay sort of awake for them. You'll probably need several of these tests but it'll be ok. I'm sure if you state that if you're anxious about it, they will handle it.
 
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