Replacement on thursday, can I have some information/support

[brachikaa]

First of all hello!

I was lurking this forum ever since I've been diagnosed with my severe mitral valve regurgation, preparing for the inevitable. I was also looking at different forums, but all of them seemed a lot more gloomy and a lot more persuasive in their narrative, and I decided to stick here!

Basically, I am a 28M, pretty healthy and thin. When I was 20 I was diagnosed with a mild case of MVP and the only thing the doctor said was to take care when doing dental work. Oh ok, I thought.

Fast forwad to November 2022, I decide to go take a random test, just to see the state of my heart. And it was bad. It was so bad in fact that every time I went to the doctors it made me feel depressed because on their faces I could see the negativity and dissapointment of my results. And I didn't even had any symptoms. One of the docs even wrote 'severe/massive regurgitation'. I only heard of severe until then... So basically that made me anxious and scared, I could barely eat, I could barely move. It was a scary, scary condition to be in. And also I'm living in Europe, in a country that is not so well off, and it was really scary even thinking of finding a good surgeon! I remember talking to one doctor and telling him 'I was planning to go travelling this New Year's Eve", and he said "I wouldn't recommend you do that.". It crushed me.

Fortunately, I managed to get an OHS appointment starting this month with the best surgeon in the country, and as a matter of fact I'll be in the hospital on Wednesday, awaiting my replacement on Thursday. I was so happy upon learning this information. Wish me luck guys!

I have some questions though, some of which are supportive in nature:

1.) Unfortunatelly, my enthusiasism for my surgery dissipated when I read that 90% of mitral valve problems can be repaired, not replaced. Talking to my surgeon it SEEMED (I'm not sure yet, but he said that my Barlow is really bad) that the only option on the table is replacement. Also, it didn't help that on another forum a guy was adament on 'take a second opinion, you can get this repaired, why replace when you can repair it'. I would also be fine with it if it meant being given the opportunity to live a normal life. But, I will definitely be thinking about this after surgery if everything goes well, of 'what could have been'. Should I talk to my surgeon in order to make SURE there is no other option than to replace the valve? I know that he said a reoperation to replace it is 100% if we try to repair it, but I would take that chance if possible. What do you think?

2.) Depression. I'm a fairly anxious person, so I don't know how the post-operative time will go. I already annoyed my family and my girlfriend a lot with my erratic behaviour during those past two months, I don't wanna continue doing that. I love 'em too much for that. But I have no idea how the surgery will affect me. Whats the best way to go through the dark phase.

3.) How different are mitral vs aortic replacements? I noticed most of the people here had aortic replacements, and seems like mitral valves are in 90% repaired. Is there anything special I need to take in for the mitral valve.

4.) INR! Yes! Even since I realized I might be on anticoagulants my mind was racing through different gloomy scenarios, what if I cut myself, what if I hit my head on something, can I do this, can I travel, etc etc...

5.) Any other tips and suggestions!

WOW! This was a lot of text, I apologize, but I really wanted to ask questions/ask for support/even vent a little.
Thank you!

 

[pellicle]

Hi

and welcome

I was lurking this forum ever since I've been diagnosed with my severe mitral valve regurgation, preparing for the inevitable.

well I'm surprised that you'd say you've been lurking here for some time and say:

) INR! Yes! Even since I realized I might be on anticoagulants my mind was racing through different gloomy scenarios, what if I cut myself, what if I hit my head on something, can I do this, can I travel, etc etc...

when there are so many threads saying that every gloomy scenario you've dreamt up is a fiction

what is it you're actually seeing here that shows that any of those points are even correct? Or has this come from being on other forums?

Just for starters

https://www.valvereplacement.org/th...tell-me-about-your-travel-experiences.888868/
https://www.valvereplacement.org/threads/international-travel-and-inr-testing.861878/post-861879
https://www.valvereplacement.org/th...erent-time-zone-when-to-take-warfarin.888482/
dozens if not approaching hundreds of mentions over at least 15 years saying its fine, there's no problem, its fine, I do it all the time?

Why wouldn't you believe that?

I'm a fairly anxious person

I'm going to say that its not "anxious" its full blown denial of the genuine answers given and a strong inclination to catastrophize.

How different are mitral vs aortic replacements? I noticed most of the people here had aortic replacements, and seems like mitral valves are in 90% repaired. Is there anything special I need to take in for the mitral valve.

in order

• similar in that both require OHS different as in they are different valves
• aortic valve replacement is I think statistically more common
• I can't comment on the ratio of repairs vs replacement, but there is plenty of robust discussion on that here. Have you google searched this site?
• I have no idea what you mean by "anything special" ... you should be guided by your surgeon and have at least 1 other opinion.

Take a breath, stop obsessing with your wheels on jacks spinning and just deal with the facts one at a time.

stuff like this:

when I read that 90% of mitral valve problems can be repaired, not replaced.

is not useful because you need your specific particulars ... most people fit into size 8 shoes, but what if you're size 10 or 6?

Lastly what is your Barlow?

I'm not sure yet, but he said that my Barlow is really bad

Do you mean you have a prolapsed mitral valve (called Barlows Syndrome by some)?

I think the first thing you should do is get a grip on the terms and undertand what they mean, start asking direct questions about them and about your results.

That'll help you to do proper searching and others to help you more. For instance, I typed:

​

possibility of mitral valve repair with prolapse barlow syndrome​

into google and this was the first link

https://academic.oup.com/icvts/article/26/4/559/4662977
Best Wishes

 

[brachikaa]

dozens if not approaching hundreds of mentions over at least 15 years saying its fine, there's no problem, its fine, I do it all the time?

Why wouldn't you believe that?

First of all thank you for your answer, I've been reading your posts on this forum (including some of threads you attached above) and they helped me a lot to put myself into the 'other side'. I think that I'm just still in a state of denial, I'm not ready to accept that I need this surgery. I am afraid of the already mentioned 'other side'. What if I'm a different person (cardiac depression is a huge problem I've heard)? What if the valve tick makes me mad? What if it was possible to repair it, but in a state of urgency we decided to replace it (I know it is not the end of the world, but still). What if the operation goes sideways.

I don't want that this pressure I'm feeling leaks onto my GF, or the rest of my family. It also has been just 'sudden'. They called me and they said - 'come next week'. Its scary, I have no time to prepare. So maybe that's why I'm a bit erratic, and I'm sorry. I just want to put things in my head the best possible way.

Also, really sorry for any misunderstandings, English is not my first language, so some of the things I write might be lost in translation.

 

[pellicle]

Hi

... I've been reading your posts on this forum (including some of threads you attached above) and they helped me a lot to put myself into the 'other side'.

ok ... I'm not sure what state you were in before but perhaps that can be blamed on a "perfect storm" of you being shocked by the news, prone to negative views and poor communication on the part of medical professionals.

I'm personally an overwhelmingly data driven and rational person, so from that perspective I can say that irrespective of what procedure you have done know that it's been done thousands of times before and we have good data on how to get the best outcomes.

the following is almost manically jumping all over the board like a fly trying to get out a window.

What if I'm a different person (cardiac depression is a huge problem I've heard)? What if the valve tick makes me mad?

hold your horses there laddie ... you don't even know if you must have a mechanical valve.

What if it was possible to repair it, but in a state of urgency we decided to replace it (I know it is not the end of the world, but still). What if the operation goes sideways.

what if the sky turned red? what if we discover V was really a documentary? What if .... till the cows come home

What if instead of imagining every unlikely statistically insignificant possibility comes true despite all possibility and you wake up fine?

I don't want that this pressure I'm feeling leaks onto my GF, or the rest of my family.

welcome to reality and the world doesn't run like an episode of pulp TV like Gilligans Island or the Brady Bunch. **** happens, we take action, we get better, we find out who's made of substance and how's made of fluff.

Humanity has had thousands of generations of history and success built around the nature of ourselves. This is true:

but modern world thinking has had us all take the blue pill for too long.

It also has been just 'sudden'. They called me and they said - 'come next week'. Its scary, I have no time to prepare. So maybe that's why I'm a bit erratic, and I'm sorry. I just want to put things in my head the best possible way.

I get that and that's why in my previous post I said take a breath and just think, ask some questions here instead of doom scrooling old posts, not understanding anything, focusing on the worst of the worst of the worst and work through it from the start.

So, you've got a mitral valve problem right? It may be amenable to a repair, but it may not ... is that right?

 

[jeffp]

First - welcome. Second - your English (or translate) is excellent.
A mitral valve surgery is very different than an aortic valve surgery, especially down the road. You will be considered high risk during any future surgeries vs, moderate risk. It is what it is and you adapt.
28 is young and your chances of an excellent long life are very good. I was in your place 18 years ago at 50, but already in heart failure by the time I had surgery. A repair was done, but failed during surgery, so they had to go back and do a replacement. 10 hours of surgery (the poor surgeon was exhausted).
Recovery is a rough road, but travelable. You’ll need family help. Afterwards you’ll have the strength of a 6 month old. You’ll eat, sleep, sleep some more, and maybe get up visit and chat with family a bit, and sleep some more. Depression will be there. Realize that it’s normal and that you WILL get better. Do the breathing exercises - very important but not fun. Walk more than you think you can. Sleeping in a recliner is often easier than a bed for a while.
Have your family bring quality, easy to digest food to the hospital. Hospital food is notoriously bad. Avoid binding foods, constipation will cause straining, and you want to not do that. Also, narcotic pain killers add to constipation.
Don’t get dehydrated. Keep yourself mentally engaged once your head settles after the first few days or so.
Once you’re past the first few weeks, things really get back to a new normal. You’ll be on blood thinners long term if you have a replacement, shorter term likely with a repair. Anything that you’ll bleed to death from on anticoagulants, you’ll bleed to death from anyway. Don’t get your arm ripped off in a machinery accident; stuff like that.
Its a lot of random stuff I tossed at you. In summary: it’s a rough road, but you can/must do it. Don’t do stupid stuff. Take care of yourself. Find some fun things to pass the time, like watch bad comedy movies.
Do well. Visit here when you’re on the other side.

 

[pellicle]

I'm not ready to accept that I need this surgery. I am afraid of the already mentioned 'other side'.

some quick points

1. the "other side" to which we refer means you're alive and recovering (so yeah \o/ )
2. as you may know I've had 3 surgeries on my heart and here I am (so too will you be)
3. check out "mitral clip" this link suggests it is at least possible in a case like yours (worth asking about)
4. no matter what keep thinking about what happens in 10 years, then 20 years because that will come to pass and should factor into any decisions you're asked to make.
5. girlfriends come and go, but good wives (and husbands) are supportive and accept these things. If she's still there after this she's probably a keeper ... if not ... plenty more fish in the sea (as the old saying goes).
6. if you've read my posts you know that managing INR is a piece of cake.

Given your young age (same age I was on my 2nd) you'll recover fine.

Best Wishes

PS: just did a bit of a quick scan around for images on a Barlows Anatomy Mitral valve and I can see why in that anatomy is problematic (images here for the interested). I would certainly give good thought to a mechanical in that case. INR can be managed and life goes on around it.

I prefer to see the opportunities while acknowledging the hazzards.

 

[brachikaa]

Best Wishes

Do well. Visit here when you’re on the other side.

Thanks a lot for the advice and kind words! Seems like I gained some composure and bravery while reading your responses on my thread and I'm ready to face the surgery - heads on (until the next irrational thought at least)!

@pellicle I did quite a lot of research on all of these different types of surgery, and unfortunately, when it comes to mitral valves in this part of world where I'm from (the Balkans) they only do sternotomies with repair/replace. I'm fine with it, I think now I found some peace, either one or the other, as long as I can continue to be active, exercise as I did and manage to do the majority of things I did before. Still, having a new valve will take some getting used to, especially mentally.

I also thing that I stored anger for not being able to live somewhere where I would have different surgery options and where I could maybe get some reasurrance that something else was possible. But, as the stoics say 'Dont dwell on things you can't control'.

I did come upon something weird. I've been required to do a couple of tests before the surgery, and one of them was taking throat/nose swab. They found 'klebsiella spp' in my mouth. I was talking to the lab assistant and she said, no worries that is normal, but maybe the surgeon will need yo to take antibiotics to remove them. Which is now a bit annoying as the results were late for 10 days, and I don't know how to treat this. A quick google search said that these bacteria are normal to be found in mouth, but I don't know if they want it removed via antibiotical treatment or something. I will need to call my doctor and see.

 

[pellicle]

But, as the stoics say 'Dont dwell on things you can't control'.

Exactly.

The reality is that a "one and done" solution has advantages. As I often say, there is no cure to valvular heart disease, only a substitute for prosthetic valve disease (in the main).

Valvular heart disease is most commonly fatal, while mechanical prosthetic valve disease is managed simply with anticoagulation therapy.

When I had my 2nd ohs there were no point of care machines, so my life would have been chained to labs. Now these systems exist and we can gain freedom and empowerment in self management

Best Wishes

 

[Woodcutter]

Hello Brachikaa.

A couple quick thoughts for you. I have a mechanical mitral valve. Overall, I'll suggest that what you want is a very good surgeon who will do what is best for you. Now, that was very easy for me to say (or write) so please allow an explanation:

My understanding is consistent with what you have been told. For the mitral valve, repairs are now (significantly) more common. In the natural valve, the mitral valve is opened by chords that attach heart muscles to leaflets. A basic premise behind a repair approach is that it is desirable to retain the chords and the basic function of the heart muscle opening the mitral leaflets through these chords. With a mitral replacement, the chords are removed. In comparison, the natural aortic valve does not have these chords.

I first had a mitral valve repair for regurgitation. In my case, the repair corrected the regurgitation (leakage) but in doing so made the valve area too small. This caused other serious problems and 6 months later I had the replacement. As others have said, you really do not want multiple surgeries. My second surgery was about 2 hours longer than expected due to difficulties from the scarring of the first surgery.

You want your surgeon (surgical/cardiac team) to be fully trained in repairing and replacing, have the information necessary to recommend the approach best for you, and then have the experience to adjust the approach if it becomes necessary.

By the way, although the aortic valve does not have the complications of the chords; however, as many on this forum will attest, aortic valve work is frequently accompanied by work on the aorta. So, while there are certainly commonalities and similarities in the surgeries, there are major differences in the details!

 

[Zoltania]

Mitral valve repair is usually preferred over replacement, but this depends on the exact nature of the problem and also on the skill of the surgical team. You can read detailed information here:

2020 ACC/AHA Guideline for the Management of Patients With Valvular Heart Disease

Section 7 deals with mitral regurgitation, and section 7.2.4 discusses the surgical options and decision-making.