Hello everyone

[Serghios]

My name is Sergio, I'm 44 years old (turning 45 next month), and I have a bicuspid valve. I live in Madrid, Spain, and I'm fortunate to be under the care of a hospital with a cardiology department ranked among the top 10 in the world: a great advantage in this journey.

I came here through Reddit, with the obvious concerns and anxieties that come with this congenital defect. I hope to find comfort and share experiences with all of you.

 

[pellicle]

Hi and welcome

I came here through Reddit, with the obvious concerns and anxieties that come with this congenital defect

if it helps at all over the decades I have transited from exactly those "obvious" concerns to the position of: its been the greatest advantage I've ever had in my life.

It forced me to look at myself honestly as nothing more than I really am (no false or fake images).
It has directed me towards a career of education and enlightenment.
It helps me to see that I must be an active and diligent agent in my own health.
Through this process I have become a person who judges truth based on reality and outcomes; indeed I regularly call "sanity" the minimal distortion of reality.

I'm now 60 and after 3 OHS's to assist me on my way I've gone along the path of rejection of denial and delusion and the acceptance of knowledge is power and am healthier than any of my relatives.

People do better in adversity than in luxury and plenty.

PS: being spain I hope they don't put you on that impossible to manage crap drug they commonly use there (I hope it is "used to use there") Sintrom. I hope you get Warfarin.

Best Wishes

 

[Serghios]

Hi and welcome

if it helps at all over the decades I have transited from exactly those "obvious" concerns to the position of: its been the greatest advantage I've ever had in my life.

It forced me to look at myself honestly as nothing more than I really am (no false or fake images).
It has directed me towards a career of education and enlightenment.
It helps me to see that I must be an active and diligent agent in my own health.
Through this process I have become a person who judges truth based on reality and outcomes; indeed I regularly call "sanity" the minimal distortion of reality.

I'm now 60 and after 3 OHS's to assist me on my way I've gone along the path of rejection of denial and delusion and the acceptance of knowledge is power and am healthier than any of my relatives.

People do better in adversity than in luxury and plenty.

PS: being spain I hope they don't put you on that impossible to manage crap drug they commonly use there (I hope it is "used to use there") Sintrom. I hope you get Warfarin.

Best Wishes

Hello Pellicle, thank you for your message. I don't think I understood your comment about warfarin; I still haven't undergone surgery, and I hope it happens as late as possible. From your comment, I believe you might not be familiar with Spain, Europe, or the healthcare and research advancements we have here. Warfarin is not used here from what I've read because it's outdated; there are better and more modern treatments: dabigatran, rivaroxaban, and apixaban, which have a safer profile and more predictable dosage compared to warfarin. Spain isn't Latin America, and Madrid is more advanced than major American cities Just letting you know in case you're confused. Sometimes, in my job, when I talk to Americans, they think Spain is an Italian city or something similar haha

 

[pellicle]

Hi

I believe you might not be familiar with Spain, Europe, or the healthcare and research advancements we have here.

I'm pretty familiar with them ...

Warfarin is not used here from what I've read because it's outdated;

not the actual reason, but anyway...

there are better and more modern treatments: dabigatran, rivaroxaban, and apixaban, which have a safer profile and more predictable dosage compared to warfarin.

they are more modern, but do not have a safer profile, and indeed are not recommended or even approved for cardiac valve patients.

I can clarify more if you like but the nub of it is that Sintrom has such a short half life that within one missed dose (accidents happen) your INR falls to un-anticoagulated. It is only used some parts of Europe (the others use Phenprocoumon or Warfarin).


Best Wishes

 

[pellicle]

Spain isn't Latin America, and Madrid is more advanced than major American cities

oh, and I've visited Spain, lived in Finland (where travelling the EU was simple) for some years and I'm not American.

in case you're using a phone you may have missed my profile summary on the LHS of the page

OzTrayLeeYa is my vernacular slang for Australia

Best Wishes

 

[Serghios]

Hi


I'm pretty familiar with them ...


not the actual reason, but anyway...


they are more modern, but do not have a safer profile, and indeed are not recommended or even approved for cardiac valve patients.

I can clarify more if you like but the nub of it is that Sintrom has such a short half life that within one missed dose (accidents happen) your INR falls to un-anticoagulated. It is only used some parts of Europe (the others use Phenprocoumon or Warfarin).


Best Wishes

Since I have not yet had valve surgery, I have no need to take an autocoagulant.

Plus I am closely monitored by a hematologist, since with my luck last year I was diagnosed with itp (Immune Thrombocytopenic Purpura), I was platelet-free. Fortunately this has now stabilized

 

[Serghios]

oh, and I've visited Spain, lived in Finland (where travelling the EU was simple) for some years and I'm not American.

in case you're using a phone you may have missed my profile summary on the LHS of the page

View attachment 890187
OzTrayLeeYa is my vernacular slang for Australia

Best Wishes

Ahahah ok sorry for miss understanding. I made a topic with my "story". Uou can see in the bicuspid valve section

 

[dick0236]

My name is Sergio, I'm 44 years old (turning 45 next month), and I have a bicuspid valve. I live in Madrid, Spain, and I'm fortunate to be under the care of a hospital with a cardiology department ranked among the top 10 in the world: a great advantage in this journey.

I came here through Reddit, with the obvious concerns and anxieties that come with this congenital defect. I hope to find comfort and share experiences with all of you.

Hello Serghios and welcome. The majority of people on this forum had, or have, heart defects caused by bicuspid valves or rheumatic fever. Many of us were young like you when we got the diagnosis and/or surgery. Read the older posts along with these newer posts and ask your questions. I can pretty much guarantee that someone has had concerns very much like yours.

PS: I spent a vacation week in Madrid in the mid 1980s when my mechanical valve was only about 20 years old. I still have that same valve at age 88. If and/or when you need a new valve I think you will also look back on the surgery as only a "bump in the road"

 

[pellicle]

Since I have not yet had valve surgery,

that's what I thought ... I was just conjecturing and (attempting to be) informing.

Best Wishes

 

[slipkid]

My name is Sergio, I'm 44 years old (turning 45 next month), and I have a bicuspid valve. I live in Madrid, Spain, and I'm fortunate to be under the care of a hospital with a cardiology department ranked among the top 10 in the world: a great advantage in this journey.

I came here through Reddit, with the obvious concerns and anxieties that come with this congenital defect. I hope to find comfort and share experiences with all of you.

No need to lose any sleep over having a bicuspid (aortic?) valve. Many people do fine with that for years and years and years. I only had mine replaced in my 50's because I had clogged arteries and they noticed my aortic valve had "moderate" calicification so they decided to give me a new valve at the same time. If I did not suffer from bad cholesterol and the clogged artery problem (with calcification on my valve) I probably would never have had my bicuspid aortic valve replaced.

I'm not a Dr nor do I play one on TV, but I believe that in and of itself a bicuspid valve is not necessarily an issue unto itself, it depends on how bad the valve might be "leaking", how well your heart is performing with it.