Mitral valve first replaced 34yrs ago, looking for help

[Louisianna]

Hello,
Firstly I would like to apologise if I'm posting in the wrong place as I am new to this sort of thing & don't fully know what I'm doing (ever).
I suppose I should start with an introduction. I live in the UK, I am 37 (I think, I could be wrong because I don't pay enough attention). I had my first replacement at 3 years old & two replacements since. I have had a pacemaker since I was 13, with one replacement since.
I was on warfarin almost my entire life, until a few years ago when I made the switch to apixaban.
I could go on but I don't think everyone wants every detail, so I'll get to my point. I have spent my entire life accepting that I am not like others, but I am at a point where I need someone or one's who understand. I am searching for someone who has had this since birth. I understand that with the nature of this most people are older before this becomes a part of their life. Which I believe comes with its own set of problems, however I feel like I need to speak to a person that's entire life has been about this.
That being said, I am always open to talking to anybody about their experiences as I am confident we all have something to offer & a unique perspective.
Also, to anybody, how are you coping since covid? Is anybody isolating?

 

[dick0236]

Hi Louisiana and welcome to a site dedicated to supporting heart valve replacement folks. I'm not sure you will find anyone here that goes back to birth.......but you will find quite a few who had this surgery in childhood or early adulthood. I was 31 when I got mine and, for me, it has been at the back of my mind ever since. Frankly, I think it would be impossible to completely remove all of the possible uncertainties from our minds. It took a loooooooong time for me to accept "live one day at a time". I have been lucky to have lived over 53 years after surgery......and, as a doc recently told me, it won't be the valve that causes my death........did I mention I am now almost 85 and several years past normal life expectancy.

As for your Covid question.........I wear a mask when in public, try to stay out of crowds, and limit any unnecessary trips ......but I don't think I isolate or "sit in the corner with a bottle of hand sanitizer"

 

[nobog]

St. Jude Medical (now Abbott) sells a couple dozen or so "baby valves" per year and has been at that rate for a number of decades, some go on to find a replacement heart, for others a mechanical valve will remain with them for their entire life. Typically in their early teens they will get an "upsized" valve that will (hopefully) last the rest of their lives - so you are not alone.

 

[Louisianna]

Hi Louisiana and welcome to a site dedicated to supporting heart valve replacement folks. I'm not sure you will find anyone here that goes back to birth.......but you will find quite a few who had this surgery in childhood or early adulthood. I was 31 when I got mine and, for me, it has been at the back of my mind ever since. Frankly, I think it would be impossible to completely remove all of the possible uncertainties from our minds. It took a loooooooong time for me to accept "live one day at a time". I have been lucky to have lived over 53 years after surgery......and, as a doc recently told me, it won't be the valve that causes my death........did I mention I am now almost 85 and several years past normal life expectancy.

As for your Covid question.........I wear a mask when in public, try to stay out of crowds, and limit any unnecessary trips ......but I don't think I isolate or "sit in the corner with a bottle of hand sanitizer"

Firstly, thank you for your quick response. Can I ask, do you have a mechanical valve? Are you on medication?
It sounds as if you have had a full life, which is nice to hear.
Has your heart condition caused any extra health issues? For example, I now have a pacemaker.
Also does anyone in your family have heart issues?
Glad to hear your not allowing covid to stop your life.

 

[Louisianna]

St. Jude Medical (now Abbott) sells a couple dozen or so "baby valves" per year and has been at that rate for a number of decades, some go on to find a replacement heart, for others a mechanical valve will remain with them for their entire life. Typically in their early teens they will get an "upsized" valve that will (hopefully) last the rest of their lives - so you are not alone.

Thank you for your response. I am aware of this, but that hasn't helped unfortunately. I have spent my entire life between 2 hospitals and apart from when I was younger and on the children's ward, I have never met anyone younger than 50. Most people my age are new to all this.
That being said, age isn't an issue as much as finding someone who has had a diagnosis since birth and operations since childhood.

 

[Superman]

Hello,
Firstly I would like to apologise if I'm posting in the wrong place as I am new to this sort of thing & don't fully know what I'm doing (ever).
I suppose I should start with an introduction. I live in the UK, I am 37 (I think, I could be wrong because I don't pay enough attention). I had my first replacement at 3 years old & two replacements since. I have had a pacemaker since I was 13, with one replacement since.
I was on warfarin almost my entire life, until a few years ago when I made the switch to apixaban.
I could go on but I don't think everyone wants every detail, so I'll get to my point. I have spent my entire life accepting that I am not like others, but I am at a point where I need someone or one's who understand. I am searching for someone who has had this since birth. I understand that with the nature of this most people are older before this becomes a part of their life. Which I believe comes with its own set of problems, however I feel like I need to speak to a person that's entire life has been about this.
That being said, I am always open to talking to anybody about their experiences as I am confident we all have something to offer & a unique perspective.
Also, to anybody, how are you coping since covid? Is anybody isolating?

Welcome to the site! I can certainly relate to the isolated feeling, as I’m in my late 40’s and dealt with this long before the internet was a thing.

I was diagnosed with aortic stenosis and a leaky aortic valve in infancy. Followed by a pediatric cardiologist my entire youth. Had heart cath’s at 4,12, 15, and 17 years old. Had to wear a 24 hour monitor to school a couple times (which looked like a big Walkman back then). They finally moved forward with replacing my valve just before my 18th birthday. There was talk all throughout my youth, but my parents and cardio chose to keep me out of youth sports and gym class etc to delay it as long as possible.

The only other invasive issue I had was an aortic aneurysm when I was 36 which required another open heart. You, being a mitral valve patient, shouldn’t face that. I have been cardioverted a couple times (shocked back into rhythm), but no pacemaker yet. I’ve been on Warfarin for 30 of my nearly 48 years on this planet.

As far as coping, it depends. Honestly, sometimes the attention made me feel “special” when I was a kid. As I got older, I dealt with more regret and missed opportunities. If my parents let them intervene earlier, I could’ve done sports maybe. I was the tallest kid in my class at a small school. I was in demand for the basketball team. I never looked the “sick heart patient” part.

COVID, I work from home. Wear mask in public. Reasonable normal precautions. I don’t dwell on outside of the greater economic / global impact.

Life otherwise, I’d be a fool to complain. An amazing wife, married 21 years. 5 incredible kids. 2 dogs, a bunch of fish. Happy with my career. I’m able to do more with fitness than ever. I run, bike, do spin classes, we hike a lot on vacations.

Nobody in my extended family up line has any presentation of BAV. Two of my boys have a very mild presentation that we would never know about if not for testing because of me. One may never need intervention. The other likely will be much older if anything at all needs to be done. None of my kids have any limitations.

That about covers any initial thoughts. . This is a great community regardless of how long individuals have managed living with issues. All have valuable input. Welcome aboard!

 

[dick0236]

Firstly, thank you for your quick response. Can I ask, do you have a mechanical valve? Are you on medication?
It sounds as if you have had a full life, which is nice to hear.
Has your heart condition caused any extra health issues? For example, I now have a pacemaker.
Also does anyone in your family have heart issues?
Glad to hear your not allowing covid to stop your life.

My valve is mechanical and its design is considered the "grandaddy" of all heart valves.

I have been taking Warfarin anti-coagulant daily since my surgery and have been taking meds for BP and chronic Afiab for several years.

I had a stroke(1974) due to low INR(?) back in the early days of ACT(anti-coagulation therapy). Stroke left me permanently 50% blind. A couple years ago I was diagnosed with an Aortic Aneurism that can probably be traced back to the bad Aortic Valve. Due to my age and the complexity of additional surgery I have decided to forego corrective surgery for the Aneurism.

My defective valve was thought to be from Scarlet Fevere/Rheumatic Fever when I was age 7 and would not be congenital......some recent cardios think I may have had both rheumatic fever and a congenital problem. No one else in my family has had similar heart issues including my sons, grandkids and great-grandkids.

Keep asking your questions and keep looking for good info.......that is the beauty of the Internet and I really could have used it 40 or 50 years ago!

 

[Sheenas7]

Hello,
Firstly I would like to apologise if I'm posting in the wrong place as I am new to this sort of thing & don't fully know what I'm doing (ever).
I suppose I should start with an introduction. I live in the UK, I am 37 (I think, I could be wrong because I don't pay enough attention). I had my first replacement at 3 years old & two replacements since. I have had a pacemaker since I was 13, with one replacement since.
I was on warfarin almost my entire life, until a few years ago when I made the switch to apixaban.
I could go on but I don't think everyone wants every detail, so I'll get to my point. I have spent my entire life accepting that I am not like others, but I am at a point where I need someone or one's who understand. I am searching for someone who has had this since birth. I understand that with the nature of this most people are older before this becomes a part of their life. Which I believe comes with its own set of problems, however I feel like I need to speak to a person that's entire life has been about this.
That being said, I am always open to talking to anybody about their experiences as I am confident we all have something to offer & a unique perspective.
Also, to anybody, how are you coping since covid? Is anybody isolating?

Hi Louisiana.
I am 70 years old. I was born with a birth defect and had open heart surgery at age 7 in 1957 to repair a malformed mitral valve and a atrial septal defect. It was pioneer surgery. As a by product of this surgery I went into complete heart block. Pacemakers weren’t available then but I was connected to one of the first one in Minnesota heart hospital. I was tethered to it for a month. At the time Earl Bakken and Dr Walter Lillehei were working together to keep children going into complet heart block. Earl Bakken went on to become the founder of Metronic. My pulse remained in the 40’s. Later I received my first pacemaker implant at age 23. It has been a long road. I got married, had 2 children and in the year 2000 my mitral valve repair deteriorated and I had a mechanical heart valve implanted. I had already gone into atrial fibrillations by then and was already taking Coumadin. So I was in my fifties when I had OHS for the second time. I have lived with this almost all of my life. Many pacemaker changes and now a leadless pacemaker in my ventricle since there was no more room for heart leads. I am pacemaker dependent and had a scary loss of capture before I received the leadless Micra in 2017. It’s a long story. I have a long complicated medical file. I don’t know if this helps you. I am being very careful w COVID. Wear a mask when I go out. If I go to doctors for any reason I add a plastic shield . I go to the grocery store and my husband and I visit with kids in our deck or yard mostly outside. I have had some friends visit w masks and social distance outside. I walk everyday and try to stay positive. I miss hugging my grandkids, going to restaurants with my friends and dancing tango. I hope this virus gets under control soon. Good luck with everything. I recommend the book “King of Hearts by G. Wayne Miller” . The story of Dr Lillehei who pioneered open heart surgery. I was on of the kids that he saved in 1957.

 

[nobog]

Link on Amazon - Dr. Lillehei:
https://www.amazon.com/King-Hearts-...4871820&sprefix=king+of+hearts,aps,891&sr=8-1