Looking for words of support (new post)

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lifesaverDO

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Good morning,

Im a 30 year old male, TOF repair at 14 months old. I also have LPA stenosis, for which I have had a total of 4 catherizations, including a balloon angioplasty and stent emplacement. I recently was told that I need my PV replaced due to severe regurgitation. I am currently less than 1 week away from this open heart surgery. Ive lived a life of many trials and tribulations, but somehow Ive won over, in fact my goal in life is to treat patients with similar ailments as me. I am currently in medical school (on leave), and hope to pursue Adult Congenital Cardiology.

Very recently I was told that I needed open heart surgery for this PV replacement. However prior to this they were trying to place the valve via a cath.

I am posting on this page to see what your thoughts are on dealing with this. My ex fiancé and I parted ways after she it seemed didn't want to deal with this or my medical school. She had recently gone on vacation while I was here at school/home attending to doctors' appointments. I was going through a lot and had asked her to call me, Her reply was "No I can't call you, not even for 5 minutes, it doesn't work like that, you have continual issues, first med School and now health issues". I mean I had it coming I supposed, someone who had wanted to sell back our engagement ring, to get something else, I refused but still got a second one for her, and then in a fight one Time she called the first one a POS. Moreso, when my health issues came up, we had a small argument and she said "I feel like I am with someone who's going to die on me any day".

Those words "die on me any day", are echoing more and more as the days come near. Did any of you have any issues like this, where your spouse left you hanging?

I was top of my class, ready to save the world, and for now I can't manage to save myself for the time being.

Thanks a lot.
 

AZ Don

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Well we are all going to die someday, and those of us with heart issues probably think about this more than most. I had cancer and open heart surgery in the same year. Both were a total shock to me, so now I know there could be another surprise around the corner and Dr's don't always give good news from test results. In the meantime I'm going to make the most of the time I have. I'm lucky to have a wife that supported me throughout. OHS is no walk in the park but it is routine for the surgical teams that perform it and the success rates for OHS is extremely high. So it is very likely that your doctor and surgical team will save you, and then you will have the chance to finish med school and save others, and hopefully find someone more supportive along the way. Best wishes.
 

Warrick

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Well not long to go, we will be here for you after
As I've said before and I think it's an accurate description- :)
"it's a little like waiting for Christmas but then you wake up and your xmas tree is on fire, the reindeer have deficated on your rug and the elves didn't flush the loo..."

not judgy but seems like the past tense ex is the best description there

all the best
 

pellicle

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Welcome

lifesaverDO;n875313 said:
Good morning,
....
I was top of my class, ready to save the world, and for now I can't manage to save myself for the time being.

Thanks a lot.
My personality has a bullshit detector built-in as well as a wanker repellant. It isn't always easy in the short term but it's stood me in good stead over the decades.

I reckon you should accept (no matter how hard it may be right now) that you seem to have similar too.

As much as it hurts, life has done one of those little favors for you in getting rid of a "friend" who has let you down in a time of need. Avoid people like that like I avoid skiing over dog **** on the ski track. It's a mongrel to get off your skiis (and looks like innocouously like a spruce acorn on the track). The first one is aware it is normally after you get back and the thawing of the skis in my apartment releases an obvious odour...

Take a listen to Frank's Wild Years by Tom Waits and have a beer.

:)
 

Superman

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pellicle;n875329 said:
Take a listen to Frank's Wild Years by Tom Waits and have a beer.

:)

Didn't know Tom had such and extensive reach. Wouldn't say I'm a "huge" fan - but I have a couple "best of's" and an old cassette tape of "The Black Rider". He would be one to see live back when he was at his lowest. Had some interesting appearances on the late night talk show circuit in the 70's and 80's.
 

Superman

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lifesaverDO,

Welcome to the forum. Not everyone is equipped to handle these issues themselves. Even more, some folks have a harder time handling it when someone they know is going through them. In her defense, it sounds like she knows she can't handle it and is being honest about that. As painful as it can be, sounds best that you found out about this prior to getting married. Beats being married to someone who is completely unsupportive.

Don't know how "med-school" is an issue - but that sure seems like something a person might want to ride out - even if for selfish reasons!

My wife knew about my heart issues prior, but my surgery was four years past when we started dating. She saw the outcome, not the time in the hospital. Being that I was the first in the family, I did not grasp the genetics of it. After having kids and finding a mild presentation in a couple of them, then we hit a pretty rocky patch. We've gotten through that, and she was with me during my second open heart. Got through that as well. Things are great now, but they weren't without their challenges along the way. We've been together for 22 years and married for 17 1/2 of those. Five kids later and living the dream!

Even if it wasn't for your current situation, sounds like you got a glimpse into the future if other issues arise. Best to find a partner that will be with you no matter what. In the meantime, I would get the open heart as a more permanent solution - then get back to focusing on adults with congenital heart defects! Really - there aren't enough of you out there. All the adult cardiologists I find are focusing on coronary artery disease and congestive heart failure. Must have thought all us pediatric cases kicked off before we reached adulthood!
 

Superman

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pellicle;n875334 said:
I admire your stance , but man, with


Sounds like A grade bitch to me...
The line you quoted was referring to the individual who is actually experiencing the issue. We've all witnessed varying degrees of reaction in this forum. From individuals who took it in stride and wondered how soon they could hit the wilderness or start powerlifting again (Juliendo and Gymguy, respectively), to others who thought they were dead as soon as a murmur was first detected (won't name any names here).

Third sentence, first paragraph was referring the individuals in our lives who seem to fall apart as soon as we get our diagnosis / prognosis. Like I said, better to find out now than create a binding legal situation and have a person bail. It's like the old saying goes, "If at first you don't succeed, quit."

Okay - doesn't fit perfectly - but I love using that line whenever I can.

So the ring thing is a tad superficial. I'll give you that! :)
 

pellicle

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Superman;n875337 said:
Like I said, better to find out now than create a binding legal situation and have a person bail. It's like the old saying goes, "If at first you don't succeed, quit."
I thought that was what I was saying too...
 

lifesaverDO

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Thanks for your words of support. It just sucks that 4 years down the drain. All I even was someone to support me. Thing is I am someone who has treated patients as an EMT and has had people literally die in my arms. I know what morbidity feels like and everyone in this forum as well. My doctor told me, we are a special bunch in that we have seen it up close how life is so fragile. MY med school friends have told m, "she's not one of us, she can never see life the way w see it".

Ive given you the nuts and bolts, there were other issues, insecurities, her wanting me to prioritize HER over my medical school ambitions at times, and in the end I even tried to explain how we are making a mistake, we shouldn't do this, we have spent lots of time together, that we should respect that.

Her response "Oh so this is how much respect you have for me, how dare you use that on me, you'd respect me, if maybe you had a sister". This was the tipping point, because she was referring to my dead sister who died due to her downs syndrome. Thats when I said to hell with you.

Its just Im a bit heart broken, I invested so much, I would drop her meds and soup on her sick days, drive 30 min to see her just for 1 hour, and always surprising her in every way I can.

I don't know just Im quite heart broken, and scared my OHS may not go as well.
 

pellicle

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lifesaverDO;n875341 said:
Thanks for your words of support. ...
I don't know just Im quite heart broken, and scared my OHS may not go as well.
I understand, I've had two relationships go south, on was 7 years, that hurt too.

Find a good woman who deserves you. Better yet, let her find you.

The OHS will go well.

How come you are not considering OHS and valve replacement?
 

lifesaverDO

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Messages
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Washington DC
pellicle;n875342 said:
I understand, I've had two relationships go south, on was 7 years, that hurt too.

Find a good woman who deserves you. Better yet, let her find you.

The OHS will go well.

How come you are not considering OHS and valve replacement?
Thank you. It will be Open heart surgery, at Cincinnati Children's Hospital, using a bovine valve.
 

pellicle

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lifesaverDO;n875343 said:
. It will be Open heart surgery, at Cincinnati Children's Hospital, using a bovine valve.
It's confronting, but I am sure you'll recover and be stronger. Your going somewhere in your life and she's back on the island in the distance[IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/scontent-arn2-1.xx.fbcdn.net\/v\/t31.0-8\/fr\/cp0\/e15\/q65\/17855444_10155175682687498_8399288988610631823_o.jpg?efg=eyJpIjoidCJ9&oh=f5349fd0c620f6410b98200caa68e65a&oe=5955F212"}[/IMG2]
 

ClickityClack

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lifesaverDO You dodged a bullet with the ex. It would've been nastier and more painful if you'd been married and/or had kids. And don't think of it as time wasted. If nothing else, now you have a better sense of when to run from the crazy.

I know how you feel about the surgery; I'm about 3 weeks behind your timeline. It's hard to imagine being in a more vulnerable, helpless position. But thousands upon thousands of people, many in much worse shape than you, have made it through this. You'll make it too and your life will be better and longer for it. I know it's terrifying but sometimes going with flow is the only thing, and the best thing, that you can do.

I wish you the best.
 
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