I Was Diagnosed with PAPVR... UPDATE.

[Iron Woode]

when I was a baby.

PAPVR - Partial Anomalous Pulmonary Venous Return

http://www.mottchildren.org/conditi.../conditions/anomalous-pulmonary-venous-return

I knew I had a heart defect but I was only told the exact problem last week. Why so long? I thought I had a different issue as I was growing up and just went with it. I had a heart catheterization when I was 16 to find the extent of the problem and determine if I needed surgery. They decided I didn't require the surgery.

I just found it odd no one told me the exact defect I was born with. Apparently this defect is very rare, roughly 0.7% of the population.

I just thought I would share my story.

 

[Red Squirrel]

Sucks. There are heart issues in my family, I really need to watch my eating before I potentially get them too. As far as I know I don't have any defects....yet, though.

 

[Mike64]

when I was a baby.

PAPVR - Partial Anomalous Pulmonary Venous Return

http://www.mottchildren.org/conditi.../conditions/anomalous-pulmonary-venous-return

I knew I had a heart defect but I was only told the exact problem last week. Why so long? I thought I had a different issue as I was growing up and just went with it. I had a heart catheterization when I was 16 to find the extent of the problem and determine if I needed surgery. They decided I didn't require the surgery.

I just found it odd no one told me the exact defect I was born with. Apparently this defect is very rare, roughly 0.7% of the population.

I just thought I would share my story.

Well, it sucks to have it, but it's way better to know for sure what's really going on so you can do what you can, like making sure you get prophylactic antibiotics before significant dental treatment and other medical procedures...

Sucks. There are heart issues in my family, I really need to watch my eating before I potentially get them too. As far as I know I don't have any defects....yet, though.

That's different. "Defects" don't "develop" (though they may not always be diagnosed properly), you either have them or you don't. A family history of heart disease is a different, vaguer issue (as in "correlation does not equal causation" and "statistics don't apply to invdividuals".) But yes, you should address that sooner rather than later, too, since by the time those issues noticeably affect your daily existence, it's generally too late to do anything but slap a Band-Aid on the problem...

 

[Ketchup]

Good that you (and your doctors) know now. How many veins are affected? Are they still staying with the no surgery approach?

 

[Iron Woode]

Well, it sucks to have it, but it's way better to know for sure what's really going on so you can do what you can, like making sure you get prophylactic antibiotics before significant dental treatment and other medical procedure.

yes, I remember having to take penicillin before seeing the dentist and other procedures too.

Good that you (and your doctors) know now. How many veins are affected? Are they still staying with the no surgery approach?

that info I didn't get. I will assume 1 or 2. I did have a heart murmur as well.

and yes, I don't require surgery.

 

[pete6032]

Can you RMA?

 

[Ketchup]

that info I didn't get. I will assume 1 or 2. I did have a heart murmur as well.

and yes, I don't require surgery.

No surgery. Great news!

 

[Iron Woode]

No surgery. Great news!

yes, great news.

I didn't want to be a member of the zipper club. if you know what I mean.

 

[Mike64]

Can you RMA?

<roflamo> Fortunately everything else has been more or less "up to spec", but I sure as hell wish I could've RMAed my teeth and gums as of 20+ years ago. I definitely got lemons...<sigh>

 

[Iron Woode]

This is not a necro.

This is an update of sorts:

I went to see a cardiologist last Wednesday for a consult. After some examination and looking at my ultrasound (I had that done earlier this year), he decided to send me for some blood work and an MRI to get a better look at my unusual plumbing. It could be months before I get an appointment. I am hopeful there is nothing serious going on there.

 

[s0me0nesmind1]

As someone that has gone through plenty of medical shit in my life, I wish you the best of luck. I've had my fair share of stuff - but there is no doubt it was all worth it. Amazing the stuff that can be done - in my case brain surgery. Haven't had a seizure since.

 

[Ken g6]

Can you RMA?

Not unless his mother is a heart surgeon.

 

[lxskllr]

Why did you go to the cardiologist? Having issues? Good luck in any case :^)

 

[Iron Woode]

Why did you go to the cardiologist? Having issues? Good luck in any case :^)

it was a for a consult. My physician wanted another opinion about my defect.

Now I play the waiting game.

 

[balloonshark]

I've also had heart issues since I was 6 months old. Twice a member of the zipper club before I could drive. Been on a blood thinner since I was 15 and now I'm in my mid 40's. It's good they are keeping an eye on things. You also need to keep an eye on how you feel and let your doctor know if something changes. I started getting tired and sleeping a lot when my valve finally needed replaced.

Worrying doesn't help anything. Think positive and enjoy the moment. It's the only thing that exists.

 

[Mayne]

In my heart and prayers.

 

[Red Squirrel]

Hopefully all goes well!

Heart issues run in the family so I will unfortunately be faced with them eventually myself too.

The scary thing though is not even heart attacks (well those are bad too obviously), it's strokes. So many people get those and it pretty much turns you into a vegetable if you get a full blown one. It's scary shit and can happen to anyone at any time. A technician at my company retired a few years ago and recently died of one. He hardly got to enjoy his retirement. :/ I didn't know him very well other than talking to him on the phone a few times but it was still really sad news to hear.

 

[:emaN resU]

If you need to have it corrected, I would recommend finding a surgeon that does these at least once every couple weeks if possible. Preferably a congenital cardiac surgeon who also sees adults.

Do not be impressed by titles, but rather by experience.

 

[DigDog]

That's nothing. I just found out that i was born ugly but my mother lied to me and for years told me i was beautiful.

 

[Iron Woode]

I've also had heart issues since I was 6 months old. Twice a member of the zipper club before I could drive. Been on a blood thinner since I was 15 and now I'm in my mid 40's. It's good they are keeping an eye on things. You also need to keep an eye on how you feel and let your doctor know if something changes. I started getting tired and sleeping a lot when my valve finally needed replaced.

Worrying doesn't help anything. Think positive and enjoy the moment. It's the only thing that exists.

the echo-cardiogram showed the valves working fine. No sign of any blockages, either. At least that was good news.

 

[DigDog]

The reason why they didnt tell you is likely because 1. You would be better off not knowing, and 2. The operation could well have been fatal.
Now that you are an adult, there should be the possibility of reversing the condition completely. Ask your doctor.

 

[MagnusTheBrewer]

That's nothing. I just found out that i was born ugly but my mother lied to me and for years told me i was beautiful.

Mine always told me the police dropped me off because they didn't want me.

 

[balloonshark]

the echo-cardiogram showed the valves working fine. No sign of any blockages, either. At least that was good news.

That's really good to hear. It sounds like you have a good ticker.

My last echo showed some narrowing in my replaced valve. If it gets bad enough I'll have to have surgery again.

 

[xerfs]

Hey, Idk guess im just browsing and releasing but, in 1999 I had two open heart surgeries before I was 6 months old, had PAPVR. Whole life never really thought about any of it just saw my scar and never cared to know. Idk its pretty fucking scary. Hearing the stories of what I went through before I could even stand or walk or talk. When I was 18 I had to get my stent increased, depending on what they saw when they went in. Was either put a new one in or just balloon it bigger. But idk... never really met anyone with it. Didn't even know what PAPVR meant just always saw it on my medical records. I didn't even know you could go 15 years without needing surgery. I hope all is well with you, find it really cool to see someone else posting about this even though Im a couple years late ahah. But now with covid I'm looking for information but no one talks about it. I don't know if i fall under the high risk or not for covid. Cause its a heart defect not disease right? Ahaha idk I'm 22 probably should be asking my cardiologist just too lazy. Honestly don't know what I am saying anymore but just kinda releasing now, just seeing the fact that you didn't know what you had, relates to me a lot. Cheers