Anyone feel misunderstood?

[Susan BAV]

Anyone feel misunderstood?

I'm two months out from an ascending aortic aneurysm repair and subsequent avr. I'm 27 years old and no one close to me can understand what this has been like. I don't want to sound whiny, I just wish I had someone to talk to! I figured this would be a good place to find that. I'm new, I just signed up.

Welcome to the site; glad you found it, Katherine.

Misunderstood? Yup. Often times.

Many people seem to think that people with heart problems have developed them from self-induced factors, thinking we consume a steady diet of pan-fried bacon on buttered and fried croissants, to be topped off with whipped cream and creme brulee .

When, in fact, heart problems tend to be genetic issues, particularly valve heart problems.

Also, if anyone was ever told they had a heart murmur when they were young but it "went away" when they grew up, well, they can't figure out why yours didn't go away also, tending to lump all "heart problems" in the same category of severity in their minds.

I saw an old friend yesterday and she asked me how I was recovering from my stroke. I didn't have a stroke and was irritated that's what she thought so I began to briefly but politely explain my congenitally defective valve issue to her but she cut me off.

She didn't mean it unkindly, she's a nice person, but I felt like I was spinning my wheels and spitting into the wind. She probably did me a favor by cutting me off, so I didn't have a stroke explaining it to her .

Misunderstood? Yup. Often times.

 

[debster913]

I'm with Susan BAV above on the whole misunderstood thing.

Because I have a weak right side due to a congenital heart attack, people tend to think that I've also had a stroke. But my story behind that is more complicated, and I often don't have time to explain, "Well, you see, my heart stopped when my mother was in labor with me, which cut off oxygen to my brain momentarily, and then...".

People do tend to think that valve problems are the same as other health-related heart problems. I was at Curves today exercising and talking to a gal I haven't seen since shortly after my surgery. She commented on how healthy I looked to have had heart surgery, and she asked if I needed heart surgery because I was 50 pounds overweight at one time (several years before my valve failed). Geez.

At work, many of the people I work with still ask me about my heart. I had to leave work at an inopportune time--right in the middle of the school day--to go to the hospital because my valve was starting to fail badly, and I didn't return to my teaching job until that September--four months later and three after my surgery. I get questions like, "Can you exercise?" "Is your heart OK now?" Often people act as if my heart is in worse shape after the surgery. I've gotten really tired of having to explain myself, so I've resorted to, "Why don't you ask my cardiologist?" I say it lighthearted enough so as not to come across as rude, but that's how I feel.

And of course, there are those who compare valve surgery to their ingrown toenail removal procedure. (Yes, I've been there, too).

So that's why I come here to vent and ask questions, and have made friends along the way here because no one is going to say, "Well, your surgery reminds me of the time I had my gall bladder removed...".

Anyway, welcome and feel free to post anytime. We all listen and understand.

Debi (debster913)

 

[Duff Man]

To me, people's ignorance of human physiology in general is hard to shrug off. I found myself trying to prove how serious my situation is to my friends and family, but I gave that up. They'll never understand unless I die. Even then they'll blame it on karma or God's will or some other irrational explanation. I discovered one family member pondered if I have this problem because of "all the drugs". Prejudice and ignorance abound. It negatively effects my mood even thinking about this subject. I'm still trying to get past it. It bugs me so much that I've instructed my wife to disallow certain people to speak at my funeral because I know the speech will imply their own completely wrong ethereal rationalization of my death.

 

[WayneGM]

Welcome to VR, Katherine. You've come to the right place. As others have said, it difficult to understand all this unless you've been through it (or have been with somebody very close who has). Glad you found us.

 

[cday]

While some people aren't asking questions to learn anything, some are.

I think of it as my opportunity to educate people a bit. Granted, I am the spouse and not the patient, but I am happy to correct people that "No, my husband did not have a heart attack. He went into cardiac arrest. He had a congenital heart defect." And if they seem to want to understand I continue with the Mercedez-Benz emblem (Tri-cuspid) versus Frowny Face (Bi-cupsid) valve. Then I can continue to the suppleness of the regular valve (bed sheet) vs Bad Frowny Face valve (egg shell). And then the added bonus of Stenosis.

One reason I don't mind answering these questions over and over is the same reason people on this board answer the same newbie questions over and over -- hey, you may just save someone's life.

And BTW heart patients aren't the only ones that have to answer the same questions over and over, year after year after year --- try being a homeschooler!

 

[Marguerite53]

Hello from just down Interstate 5 a piece! I hope you return to us Katherine! Don't let us scare you off now that you've decided to join us. You've gotten a LOT of responses here ....obviously your very first post touched a sensitive nerve in many of us!!

In my case, I found out about my bicuspid valve at your age, but then did not have to have surgery until I was 52. With 25 years to think about it, the news that surgery was suddenly imminent was very unsettling. But to have to face it at your age.... that takes an enormous amount of bravery. We can help you keep that bravery intact. I hope you will let us.

I found that when I learned I would be needing the surgery, I really only told the people who needed to know. Close family and closest friends only. If they chose to tell others, fine. Otherwise I really just did not have to deal with other people during a time when dealing with my own emotions was difficult enough.

I'm 2 years past my surgery. Just ran into a couple whose son is our oldest's age (your age! 26). That son was not very nice to our son for a few years, and while we spent many "parent" type hours here and there with these people, and say hello whenever we run into each other, they did not know of my surgery. I still would not have mentioned it to them, but he is an anesthesiologist (actually Head of Anesthesiology). He mentioned that he was taking on a new project and I asked him if he knew my anesthesiologist (this isn't that big a town) since I loved "my guy" (he was hilarious....had me laughing right into the Operating Room ... right up until the moment when he put me under saying, "here we go, sweetheart") and couldn't remember if they knew about my surgery or not. Well, he responded to the information about my surgery in a head-tilting kind of way. I could see the machinery working in his head (hello....he's been there, watched that) and he nodded in complete respect at my having gone through this. It was very nice. No stupid questions. No platitudes. Just an oh, wow, yeah. Good to have you here kind of thing. The best kind of response.

So please come here when you need people to listen. It is what we are best at. And there are a LOT of us here!!!

Best wishes.

Marguerite

 

[A New Beginning]

hey and welcome.

i can totally understand when you say you just wish you could talk about everything and have someone understand. i am fairly new still on this site and having this site helps a geat deal.

i have people who keep asking how did you feel going in, what was it like, what about when you woke up....etc.... sometimes i just want to say, why dont you go and have it done and then you tell me.

you have come to the right site and we talk a lot, but it is sooooooo helpful.

wecome again

Aja

 

[KatherineK.]

Ross is right, people have no clue. My best friend of 29 years did not believe that I had no memory for 5 days. That happened after they shocked my heart. My friend said she had her gall bladder out (4 tiny incisions) and did not have memory issues. I tried to tell her apple/oranges. Very stressed relationship for awhile. Your not alone.

My boyfriend of 8 years didn't believe that I had memory loss either!

 

[catwoman]

My boyfriend of 8 years didn't believe that I had memory loss either!

I had to pull out my driver's license once post-op -- couldn't remember my street name, I could remember the address number, but not the street.

That was kinda scary!

 

[Donnchadh]

Ross is right, people have no clue. My best friend of 29 years did not believe that I had no memory for 5 days. That happened after they shocked my heart. My friend said she had her gall bladder out (4 tiny incisions) and did not have memory issues. I tried to tell her apple/oranges. Very stressed relationship for awhile. Your not alone.

HA Ha exactly the same thing happened to me. My friend was all worried for me then had some galls stones removed 2 weeks before my surgery and was like...man dont worry so much.
I then showed her my scar and she was like Holy **** Batman.
I am 36yrs old and 9 days post op feeling like Im a child am am sore and weak can do very little for myself but I am improving every day. I now have my whole new life ahead of me. As do you.

 

[KatherineK.]

People are almost comical about this. I was talking about taking Coumadin for the rest of my life and this person was like "Oh yeah, I know, I'm lactose intolerant." What the hell?!

 

[Duff Man]

People are almost comical about this. I was talking about taking Coumadin for the rest of my life and this person was like "Oh yeah, I know, I'm lactose intolerant." What the hell?!

hahahahaha

This is exactly why I don't even talk about it anymore. I can't possibly educate all of them. I just end up getting frustrated because they can't comprehend what I say and my BP gets higher and ehh.

 

[Bina]

Post op I would get really depressed by well meaning friends (?) who would relate stories about how their older relative had a triple bypass and was out walking 5 miles a day just 2 weeks later. Right. I'm sitting in the house with this new valve bashing the crap out of my weakened heart and it's all "in my head".....and the SVT and PVC are all in my imagination too. Grrrrr.
And that's why I LOVE my dog.

 

[Ross]

My boyfriend of 8 years didn't believe that I had memory loss either!

My sister in law thinks I should be held responsible for all of my sedated actions during my 5 weeks in CSICU. Now do you want a laugh? She compares her shoulder surgery to my heart surgery. Sure thing Sue, I'm sure that shoulder surgery that lasted all of 1 hour and required minimal sedation remotely compares to what I went through. Hmm yeah, right.

 

[SHEEPDOG]

Lots of people...

Lots of people...

... tried to tell me that I needed to find ways to relieve stress and not exercise too hard prior to, and after, my surgery. People hear "Heart" and AUTOMATICALLY think Bi Pass or MI or something like it. They just don't hear VALVE! My Sgt. almost put me on a desk a few days pre-op. "WE DON'T NEED YOU HAVING PROBLEMS OUT THERE" I DIDN'T HAVE ANY PROBLEMS FOR THE PAST 2 YEARS, NOW YOU ARE CONCERNED? My mom still cant believe I don't remember the first day and 1/2 in the hospital and only bits of the next 3 days.

 

[Susan BAV]

Ross, this reminds me...

Ross, this reminds me...

...Now do you want a laugh? She compares her shoulder surgery to my heart surgery. Sure thing Sue, I'm sure that shoulder surgery that lasted all of 1 hour and required minimal sedation remotely compares to what I went through. Hmm yeah, right.

One of my good friends who had never had a surgery up to that point (and she is a good friend but she's just not as experienced as she thinks she is) told me that her friend's doctor (are you following that) told the friend that a hysterectomy is way more painful than OHS . And I'll bet I heard her say that nearly a dozen times and felt it to be a put-down.

Now I don't know why anyone even makes that nonsense up or wants to talk about it. It's certainly not encouraging. And, it's all dictated by so many variables anyway.

But after I had a hysterectomy also, I was able to tell her that, since I now had both, there was no comparison. OHS knocked my socks off and the hysterectomy was a breeze (for me).

In my friend's case, it wasn't maliciousness. I'm sure it was primarily due to ignorance. At least she doesn't talk about it anymore.

The funny thing is that I nearly never talk about my heart or my health to my friends anyway and I try to always be a very empathetic listener to others' issues.

 

[Susan BAV]

Sheepdog, I thought you had a bypass?!?

And wasn't it brought on from a steady diet of pan-fried pork rinds?!?

Just kidding!

And pass those pork rinds 'round. Y'hear?!?

 

[Gnusgal]

I seem to have the opposite problem from many of you... People freak out when they find out I'm heading in for surgery of ANY kind (having had 16 I can tell you some are worse than others). Last year when I had to get an ICD people kept asking me if I should lift that, reach up to the high shelves, etc. They all seemed to think I should be laid up for weeks and weeks when all I had was a simple little incision in my shoulder and was out of the hospital in a day!

Now OHS is different. That knocks you out! But it still was annoying to me every time I heard "But you're so young!" Like heart issues have an age requirement? Or worse "You look so healthy!" Yeah, I pretty much am. Just have a bum heart.

And the memory stuff still drives me nuts. My mom and husband were shocked to find out I remembered NOTHING of several conversations we had in the days following my VR. I only have spotty memories and they're more images than full memories. It's so frustrating when you know you talked and interacted with people but have no idea what you said or did. Then there's the residual memory problems. I frequently walk into a room and forget why I'm there. I have had more than one person say to me "You're too young to have that problem." My response is always "You try going under anesthesia 16 times and see how good your memory is!" They usually stop saying that.

 

[ottagal]

Hi Katherine,
So glad you found us! This is a fantastic site with members who will not only lend you a listening ear and empathy, but also wonderful support and sage advice. I have not had my surgery yet, but received news from my cardio. not too long ago that OHS surgery is imminent. I went through the stages of shock, disbelief, anxiety, many tears etc. I also tend to be one who wears my 'emotions' on my sleeve. Although family members and friends want to be well-meaning, that is not always the case. I was completely shocked when a family member told me that I was "overreacting" to this news. This is when I realized that she "really does not get it". Needless to say, I am grateful for this forum where I am not "misunderstood".
All the best to you and talk away!

 

[Cooker]

Welcome to the zoo ... Take your shoes off and sit a spell