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zoeker

Member
Joined
Sep 23, 2024
Messages
7
Location
Helsinki, Finland
Hello,

Currently at 44, my BAV with moderate to severe stenosis and moderate regurgitation was discovered in May 2022, the first time I had heart ultrasound done in my life. I went to have it checked because a year before that my gastroenterologist mentioned that she hears some kind of murmur and recommended that I have it checked at some point, just to be on the safe side.

At that time I didn't have any symptoms, got prescribed ACE inhibitor, a statin and acetylsalicylic acid. Wasn't really happy with the meds but in the end started taking them, and continued living my life, staying active and having checks every now and then, hoping that things will continue like this for at least a decade. My last regular visit to my cardiologist was on June 28 this year and it showed pretty much the same situation like it was 2 years ago and I still continued having no symptoms whatsoever.

Then in August I started feeling hot all of a sudden, sweating a lot and definitely noticed that something's amiss because my Venu smartwatch reported that my body practically doesn't rest, I had high stress all of the time, day, night, during sleep, awake. I ran the basic thyroid tests and much to my surprise (because I had run them two months before that and they were absolutely normal) this time nothing was within the reference ranges. As a result I started antithyroid therapy with carbimazol at the beginning of September. My summer was pretty busy and I noticed that I had lost 5 kilograms without even noticing it and due to the thyroid problems and feeling tired I didn't dare visit the gym.

I live on top of a small hill. On the one side of it the slope is steep and on the other it's gentler. I started noticing that on the steep incline, which is the one I use most often, I would get somewhat out of breath and I would feel tightness in my chest, but I thought that it was because I have had hyperthyroidism for more than a month and my body was simply tired. I also started noticing that even on the genlter slope, when walking uphill I would still feel out of breath by the time I reach home.

10 days ago, on Saturday, after having done 20000 steps on Thursday in the forest, then 18000 more on Friday picking mushrooms and then 16000 on Saturday just walking slowly for three hours, I was going back home and was in a hurry for the common weekly sauna that is a usual thing in all blocks of flats in Finland. I took the steep incline and decided to go for it fast. By the time I reached the top I was heavily out of breath, but went on, I had 50 meters or so to my door. Then a bit further down the path I started seeing "stars", and my chest was really tight. I got scared and remember mumbling to myself "this is not good, this is not good". From that point on I can only reconstruct what must have happened, because I don't really remember it. I must have decided, to the extent that I was able to think (clearly) that, after all, my home is so close, I'll be able to reach it. Then apparently I have lost consciousness, fell down on the ground, first hitting my knees slightly and then my head hitting the asphalt with the chin.

Then I remember hearing "Are you okay? Do you want me to call an ambulance?" coming from a lady somewhere close. I heard it a couple of times not really understanding what's going on, then I slightly got an idea what must have happened. I managed to get up, lightheaded, and my silly reply was "Why would you want to call an ambulance?", probably still having hopes that all of this is just a bad dream and being in denial about it, to which the lady responded "You really don't look well at all". I realized there's metallic taste in my mouth, I was spitting blood and my tongue identified a fair amount of broken teeth. I got home, tried to clean myself somewhat and called the emergency number. They came and took me to the ER.

Long story short, apart from three fractures to the mandible, one at the symphysis and one on each condyle, and after a week worth of tests, the conclusion is that I've had an NSTEMI, with global ischemia (ST depressions present in pretty much all ECG leads but one), troponin also rose and came down. Luckily my ECG returned to normal and ultrasound at least shows the heart to be working fine. The stenosis however seems to have progressed in two and a half months' time alarmingly and from an AVA of 1.1 cm2 at the end of June, it is 0.7-0.8 cm2 at the moment and regurgitation seems to have also deteriorated.

Doctors are reluctant to let me go back home in these circumstances and strongly recommend that I get a valve replacement during this hospital stay. They have already asked the cardiac surgery unit to include me in their plans in one of the next weeks.

I had completely different plans for the upcoming months, I was supposed to travel three times, do lots of stuff... There was a short period of not being able to accept things as they are and being "annoyed". I think I'm past that point now, but while I was writing this post and re-enacted the event in my head (for the first time in this detail) I can identify that I'm not comfortable with it so I suppose I'll need to dedicate some time to reflecting upon it.

Now waiting for the surgeon to contact me in order to discuss what the options are.

I'm glad I've found these forums, seeing that many other people have already been there, faced challenges and overcame them, living normally and sharing their experiences. Thank you for that!
 
Geeze mate, quite the rough entry.

Welcome to the forum, I hope that you get some data to decide about valve choice here.

Best Wishes
 
Geeze mate, quite the rough entry.

Welcome to the forum, I hope that you get some data to decide about valve choice here.

Best Wishes
Indeed a spectacular demonstration of how one important thing can go wrong leading to a small chain of more things going wrong and I'm now in the not so easy situation of having a broken jaw and eating purees all the time, broken teeth that need to be taken care of (maybe some of them before the surgery), trying to have Graves' under control and last but not least a very poorly performing BAV. Just two months ago I was aware only of the latter and life was so much simpler. 🥹
PS: Tervetuloa

a question may come up for you which I answered here:

https://www.valvereplacement.org/th...44-year-old-who-loves-beer.887357/post-893881

Moi
Kiitos @pellicle :giggle:, I did the initial reading two years ago and at that time I tended to think more in black-and-white, emotionally rejecting any change to everyday life, especially one that's going to be there until I die. Nowadays, less emotional and (do I dare say) wiser, I can see that it ain't that straightforward, things aren't necessarily what they seem to be at a first glance and paradoxically, the only true constant is change, letting me be more at ease.
 
Huomenta

Indeed a spectacular demonstration of how one important thing can go wrong leading to a small chain of more things going wrong
if I may say, your situation is perhaps "textbook exemplar" ... really sorry about that.

and I'm now in the not so easy situation of having a broken jaw and eating purees all the time, broken teeth that need to be taken care of (maybe some of them before the surgery),
lets not ask "how could it be worse"




I did the initial reading two years ago and at that time I tended to think more in black-and-white, emotionally rejecting any change to everyday life,
yep ... and that's totally normal ... Its interesting how we really want that "change" when its done "growing up" and acquiring new skills and abilities, but we really resist anything retrograde in direction or "not in our control" ...

Human nature!

especially one that's going to be there until I die.
don't be like that, prior to death there will be more changes you won't like ...

Nowadays, less emotional and (do I dare say) wiser,
happens to the best of us ...

I can see that it ain't that straightforward, things aren't necessarily what they seem to be at a first glance and paradoxically, the only true constant is change, letting me be more at ease.

and the only time when change stops is at death.

iistuu kuin nyrkki silmään

You didn't ask, but:

https://cjeastwd.blogspot.com/2024/01/heart-valve-choices.html

and also the main thing that people consider when looking at the other half of that equation is managing anticoagulation:
https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html

I'm a little familiar with INR management issues "suomessa"

Best Wishes
 
Cheez whiz, that is a rough go you had! I am glad they are expediting your care and hope you'll be able to get a replacement and move on quickly.

It's unfortunately that Graves happening at the same time contributed to missing the deterioration of your valve. In my case originally my symptoms were misinterpreted as due to pregnancy until they reached a critical point (looking back this seems absurd but it happened).

You sound healthy as heck overall so in a great position to bounce back strong and get back to vigorously hiking all over and enjoying your beautiful country. Wishing you the best.
 
The guys here are fast! I’m scheduled for surgery tomorrow. I’ll try to get used to the thought and will hopefully be able to get some sleep. 😳🙄🙄😳

The available mechanical options are On-X and Carbomedics and they will take the decision during the surgery, as far as I understood one brand offers more options when the aortic annulus is small. Anyway, I don’t think I’m fit to express any preferences and will leave it to the experts.
 
The guys here are fast! I’m scheduled for surgery tomorrow.
Wow, that's good!
The available mechanical options are On-X and Carbomedics

6 vs half a dozen

and they will take the decision during the surgery, as far as I understood one brand offers more options when the aortic annulus is small.
Interesting

See Ya on the other side
 
Wow, that's good!


6 vs half a dozen


Interesting

See Ya on the other side
Correction, St. Jude instead of Carbomedics it is. I was kinda surprised initially that it’s missing.

Yeah, see you on the other side, on Friday. Definitely not an everyday thing, I’m a bit scared 🫣😅
 
Being scared sounds normal, however please remind yourself that these surgeries are done, with success, 100,000 times a year. Plus your surgeon and team are a well oiled machine, there to get you to the other side, with great results. Sending you best wishes and easy landing!
 
It’s amazing what they can do, as I am waiting scheduling I am cultivating curiosity and gratitude to keep nerves at bay. Back when I had my repair I vividly remember waking up and thinking “Hot damn! I’m still alive!” And the gratitude really seeped in and lasted a long while. Wishing you a routine and very successful procedure. ❤️
 
Welcome to the forum Zoeker.

I have had hyperthyroidism for more than a month and my body was simply tired. I also started noticing that even on the genlter slope, when walking uphill I would still feel out of breath by the time I reach home.
It is very common for people to be somewhat in denial about aortic stenosis symptoms and try to assign the blame to something else. After all, aortic stenosis with symptoms means its time for surgery. Easier said than done, but I think that the take home message is that if you have aortic stenosis and get symptoms, call your physician and get updated imagery immediately.

The guys here are fast! I’m scheduled for surgery tomorrow.
This is great news. Major points for the medical system in Finland. With AVA of 0.7 to 0.8cm2, and severe symptoms, there is no doubt that it is time for surgery. I'm very glad that they are not delaying valve replacement.

Please keep us posted on how things go and give an update once you feel up to it. Rest assured, this is a very high success surgery and you are young and in good physical condition. You've got this and you are in expert hands. Your part is easy- just go to sleep and let the experts do their thing. Then, your work begins with the recovery process, but I expect that you will do well in recovery, with your enjoyment of physical exercise.

We will see you on the other side! :)
 
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Hey, glad to see you emerge!

Hello from the other side! I underestimated how much it’s gonna hurt.
its hard to describe it ... stay away from comedy for a little while ...
;-)

But I’ll be fine. 😊
I'm pretty sure you will be too.

Having had at least two of these I can't understand those yet to have their first snuggling up to a choice which makes it certain they'll have at least a second.

According to my surgeon my valve was unicuspid
uncommon

Keep on walking my friend ...

Best Wishes
 
Yeah it hurts and for some reason, you always have to wait too long for your next dose of painkillers
Next week you will feel a LOT BETTER!
 

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